Tag Archives: family

Family Does Not Mean Common DNA

We talk to each other on the phone
Nothing much of nothing

So many topics not to be discussed

Stepping around the land mines of opposing views

The things we say don’t matter, have no connection

The only thing we have in common is the past

Mother, father and child

Years later and light-years apart

Idle chit chat of dinners out and what the lawn man said about the hedges

Have you heard from your children

And I pass along the news of the next generations

As we talk, I find myself wondering

Why do I even bother to talk to them

I owe them nothing, I have no debt to the past

I have fulfilled my childhood obligations

An obedient child, bowing to their authority

Learning how to lie and be sneaky to get past

The eyes of parents who don’t like small children

We have less to say to each other than

The conversations we have with strangers

I am not that child; I have changed more than they can imagine

They have changed into sad people, waiting to die

I feel sorry for them

Mother is a complainer, nothing makes her happier than to

Grouse and mutter about her health, the clerk who was rude

My father’s staying up all night on the computer

My father is trapped in the house with her and

He hates confrontations so he hides in the Internet

He’s not as vocal about her shortcomings to me

As she is when she speaks about his; even as she laughs

You can tell it makes her angry

Two strangers living in the same house

Even after more than 50 years of marriage

To be honest, I don’t really know these two people

That I call my parents

Our lives diverged when I left home at 18

Thirty-six years later and we’re all of us new people

I have come to a deeper understanding of myself

And I know that the “me of me” is not someone they’d want to know

I think maybe they suspect that as well

So we maintain the façade of familial ties and emotional connections

Where there is none, not any more

And we talk on the phone, speaking nothing much about nothing

Our only link is the past; and our relationship has no future

~~KGChmielewski 2016


Family: fam-i-ly; fam-uh-lee, noun

~~a group consisting of parents and children living in a household.

~~all the descendants of a common ancestor

“We are family”; family honor; family dinner; holidays with the family; family time; family rules; family movies.

We have a fairly common idea of what a family is–you know, Mom and Dad, the 2.48 children, house. white picket fence and a cute dog or cat. We buy into this concept of family as the only form that “family” can take. We recognize all the labels of family: mother, father, sister, brother, aunt, uncle, cousin, niece, nephew, grand(label) and if you live long enough, “great-grand”(label). We compare strong relationships to those not related to us with some version of those labels–my “brother from another mother”, “the daughter I never had”, “like a grandmother to me” and so on.

I think that’s backwards. Based on my own (dysfunctional) family, I strongly believe that “family” is NOT “all the descendants of a common ancestor”–or a commonality of genetic information. Just because we share the same genes does not mean I HAVE to love you–or even like you, and they are different things. In theory, families are the ones to whom you can turn to, no matter what, and they will respond in love. In reality, we all know that it doesn’t always turn out that way. And just because we have common DNA doesn’t mean that I have to stop my life to get you out of some mess or lend you money without expecting it to be repaid. You can swap the personal nouns in that one and it would still be true: you don’t have to stop your life and etc.

The concept of family, especially the Norman Rockwell version of American Family, is such an ingrained part of our society’s structure, that we don’t even question it. Most of the time. I have had to question it for several different reasons. Let’s do this chronologically: my parents do not actually like children and probably shouldn’t have reproduced. But that was a part of their generational expectations (marry, have kids, in that order) so it never occurred to them to not have children. And I am grateful to be here (as is my brother, I assume). So I was brought up by an overwhelmingly authoritarian mother. Example: when I was still a baby, when we went to someone else’s house, my mother would spread a small blanket (say, 2 feet square) and place me and my toys on it. I was not allowed to go off of that blanket. People were impressed by my ability to not get under their feet or demand things from Mother, just sit there and play quietly. (The thought of doing this to my children still gives me the willies.)

As I grew older, there was still the hard-line rules and the unspoken but definitely understood requirement of complete and immediate obedience. I got spanked if I didn’t do what I was supposed to–or if I did something that I wasn’t supposed to. My mother usually punished me–she used a wooden spoon as her method for spanking. One time though, I did something real bad (and in hindsight, it was something very foolish–but childish) and my father spanked me. With a leather belt. I was 7 or 8 years old at the time.

We lived overseas for several years and at one point, there was no English-speaking school. So my mother home schooled me. Three or four hours in the morning, then we’d have lunch, then she let me go outside. I wandered all over the local area, for hours at a time. I was allowed to go to the beach by myself but with very strict instructions of NEVER entering the water. I was smart enough then to know that if I did go in, I’d have to dry off before going home. (The only time I ever broke that rule wasn’t even for swimming–I was offered a chance to water ski. Complete strangers (but a woman, if that makes a difference) and she asked if I’d like to try–they were using a sort of beginner’s skis–one wide ski with two foot holders. I got on in the surf, rode out and around and landed back up on the beach. Not a single drop of water on me!)

Let me reiterate that for you: I was out of the house, beyond my mother’s vocal range, doing whatever with no supervision. I went to the beach and built sand castles; I played in a little group of evergreens that made “rooms” between their trunks. I walked around the other houses and made friends with an old lady who spoke no English and I spoke very little Thai…but I’d go inside her house, she’d give me cookies and a drink and we’d watch some Thai kick-boxing together. Then I’d go home. I don’t know if I ever told my parents about her. I learned from a very early age to be sneaky (and to lie).

Fast forward 20 years and I have my own children. The thought of them being somewhere that I didn’t know where they were, and doing the same sort of things that I did at there age…made me have nightmares, so to speak.

So under my parents’ regime, I was outwardly obedient and inwardly rebellious. I came home drunk once–a cast party for the spring musical, I tried every single drink that came around and my friends had to carry me into the house. I was grounded for 6 weeks and missed the Junior-Senior Prom because it was during that time. A little bit after my sentence was over, I mentioned not being able to go and my mother looked all shocked and told me that I could have gone to that! No, I couldn’t because you didn’t tell me that PRIOR to the dance.

I think you get the idea. I usually sum it up as “I never had a childhood”. I lied to do the things I wanted to, especially during those rebellious teen years. I freaked out other adults when at the ages of 7 or 8, I would sit in the room with the adults and occasionally added something to the conversation–pertinent and not the sort of thing you’d expect from a child. Things didn’t improve when my brother was born–7.5 years between us and I became his 3rd parent. Poor guy.

At 18, I joined the Air Force and left home. The first 6 months of freedom were spent on the stupidity that comes with freedom from the jailers. I drank, I had sex, I got pregnant. That “sobered” me up pretty fast. (Side note: I told my parents about being pregnant; I’m pretty sure they think that I lost my virginity to my child’s father. Sorry, folks. Did that 2 years prior with my boyfriend.)

I gave my child up for adoption and went on with my AF work. I married a co-worker and when my term of enlistment was up, got out of the AF so that we could start our family. My son was born in ’86, my daughter in ’88. We moved as the AF sent him and then at 11 years’ of service, he chose to get out of the military and return to civilian life. We ended up living in the same city as the rest of his family…but our marriage is best left for another time. Let’s just say it ended long before I gave up and divorced him.

My mother had the unmitigated gall to tell me that perhaps (he) would accept God’s love into his heart and “take me back”. I told her in no uncertain terms that I was never going back, that he hadn’t pushed me out, I had left him. (And when I did leave, I lost the family (of in-laws) that I had belonged to for almost 18 years.)

Leaving home and having my own life did not stop my mother from trying to tell me what to do. It took her about 25 years before she realized that my brother and I would listen to her telling us what we needed to do and we’d just go “uh huh” and then do what we wanted. She was not happy about that. And the biggest reason for that unhappiness is that, as I have come to realize, she is a narcissist. One of the main characteristics is strongly identifying (yourself) by the job or title you hold. In other words, you are your job. My mother wants to be a mother, NEEDS to be a mother, in order to have any sense of identity.

I haven’t spoken to my brother in almost 6 years–not because we are fighting, but because our lives are so different, there is no common meeting ground. All of my grandparents are dead, my favorite uncle, too. The only living relatives (all cousins) I have beyond immediate family are completely unknown to me, scattered who knows where–and there’s very few of them. I am, in a very real sense, an orphan.

However. For a long time, I had a group of friends that were closer to me than my own DNA-related family. Then circumstances changed and we all moved on. I met and married my Beloved, and have become part of his family. In fact, my mother-in-love told me that she did not think of me as a “daughter-in-law”, but as a DAUGHTER. His parents have been more involved in our lives than mine ever were. And I don’t mean the bad kind of involvement–I mean emotionally AND financially supportive. For various reasons, he and I chose to move across the country from them–and while they miss us, they absolutely agree that we had to do it. We talk to them almost every day. I talk to my parents maybe once a month.

They say that “home is where, if you go there, they (family) *have* to take you in”. WTF is that? A mandatory obligation to take in someone just because they happen to share DNA? Let’s put this in really simple terms: you do not have to accept anyone or anyone’s behavior “just because” you are related. If your DNA family treats you in a way that you would not tolerate from a stranger, you do not have to tolerate it from them–even if it means cutting of contact with these (poisonous, negative, judgmental) relatives.

If your DNA family is not supportive of you and your goals; if they do not give you respect; if they denigrate you or in any way make you feel bad about yourself; if they treat you as a child even after childhood; if they don’t like your chosen friends or mates and say so to you; if they don’t accept your choices; why on the gods’ green Earth would you bother to spend time or the effort of any contact with them?

Those who you spend the most time with–happy or sad time? THAT IS your family, regardless of genetic codes. The people you rely on, the ones you can trust, those who support you being you…are family. And the best part about a chosen family, instead of an accidental one is that you can have endless amounts of “relatives”–no limitations on how big (or how small) this healthier family is!

Once a Mother, Always a Mother

I miss my children. It’s not the miles (we live across the country from each other), but it’s the passage of years. I am proud of them both. They’ve made good lives for themselves, with jobs and partners and children of their own. They have grown up to be what I had wished for them: responsible, independent, compassionate people.

But lately, I’ve been doing a lot of thinking about those years when they were young. (And I was younger, but that’s not the point.) Looking back over all those years, it’s like a slideshow in my mind. Flickering images, passing in succession, of babies and toddlers and tweens and teens. I have come to realize that I loved every moment with them. I’d like to be able to relive some of that, to have a second chance to enjoy all those “firsts” for those new beings.

I had only the first 3 days of my eldest child’s life as I gave her up for adoption. While that was a hard decision, I have never doubted it, have always known that it was the best thing for her–even if it wasn’t what I would have wanted for me. But my circumstances were such that I was not able to have a child in my life at that time. I am still in contact and I am happy to report that her mother did a great job–I’m also very proud of her and her accomplishments.

W, my son, was born in the year of the Texas sesquicentennial (150 years) of statehood and the 100th anniversary of the Statue of Liberty. I was 8 months pregnant with him when I watched Challenger blow up. Ronald Reagan was in the White House. We were listening to “That’s What Friends Are For”, “Addicted to Love”, “Rock Me Amadeus” and Prince was giving us a “Kiss”.

Ferdinand and Imelda Marcos had fled the Philippines, leaving her thousands of shoes behind. 1986 was the year of the nuclear accident at Chernobyl, Chicago won the Superbowl and the Mets were the World Champions. Science was giving us the first Hep B vaccine and superconductivity; Voyager passed Jupiter and sent back photos that answered some of our questions about it. Fox channel was born on our TV and Oprah had her show.

I was busy with more important things. W was born at the end of March. I watched him lift his head and turn it over while in his layette at the hospital. His father and I took him home and began our life as a family (not just a couple). Because I breastfed him, we had a lot of “face” time. I talked to him and sang to him–not unlike the mariachi bands that wander through the Mexican restaurants while you’re trying to eat. There were so many firsts, those remarkable moments of new actions, new abilities. His first smile was wonderful, all gums and happiness.

Now, looking back, it seems like the time went by like lightning…a flickering moment and then on to something else that was new. He learned to drink from a straw. He tasted strawberry jam for the first time. He laughed, that deep and wonderful belly laugh that only babies have. He went to Mother’s Day out, leaving the house as it had always been and then coming home to an empty house; then he crawled all over, looking for our things. He (and I) lived with his great-grandparents for several months until we left for Germany. His first Christmas filled the floor with presents from the grandparents / great-grandparents. He preferred his father’s optic orange golf ball.

He got a stuffed animal for his 2nd birthday, a duck we named George. W still has George and he still sleeps on W’s bed. Apparently his wife cuddled with George when he was on sea duty. He would take all of the toys out of the footlocker (toy box) and then climb in his…boat? Spaceship? Maybe it was his car… He had a toy phone and he would hold it up to his ear and hold a conversation–complete with pauses while the “other person” was speaking. He was a loving baby, happy to get hugs and kisses, which he learned to return with great enthusiasm. There was a certain feeling of awe to realize that I was the center of his Universe–at least for the first couple of years.

His sister (L) was born in 1988, when W was 2.5 years old. That was the year George Michael sang about his “Faith” and it was the first time we were Rick Rolled. (We didn’t even know that was what happened, those first few times of hearing Rick Astley singing.) And we all knew the words to Bobby McFerrin’s song…”Don’t Worry, Be Happy”. Reagan was still President. Pan-Am flight 103 exploded from a bomb, to crash in Lockerbie, Scotland. Benazir Bhutto was elected as the first Islamic woman to be Prime Minister in Pakistan; she said of her two terms in that position: “The government I led gave ordinary people peace, security, dignity, and opportunity to progress.”

Michael Dukakis and Lloyd Bentsen were the candidates for the Democrats; George Bush and Daniel Quayle were the GOP’s choice. Washington won the Superbowl; LA Dodgers were the World Series winners. CDs were outselling vinyl and Ted Turner created his own TV station. “The Last Emperor” won the Oscar for Best Picture. Oh, and the US Navy shot down an Iranian airliner after mistaking it for a jet fighter.

L was born in the middle of November, just in time to get Christmas presents that year. She was also born in Augsburg, Germany. The first stuffed animal she was given was from her father and brother–a little orange tabby kitten. Last I heard, L still has it.

Each of my pregnancies were different except for the morning sickness that lasted all day. This time, with L, I had a toddler to chase after and couldn’t just sit quietly, hoping for the queasiness to pass. By the time I was about 6 months along, poor little guy had to climb the four floors up to our apartment by himself. I wasn’t able to balance him and my tummy without feeling like we’d all go rolling down. The only question he asked me about the sibling that was coming along was “how does the baby get out?”. Whew. Missed the big one, “how did the baby GET IN?”

I announced this pregnancy to my grandparents (the “greats” for my kids) when I told my grandmother that I could not come to the US for their 50th wedding anniversary because the airline wouldn’t let me fly with a newborn. Instead, they came to Germany for Christmas and New Year’s. It was the first time they had ever been out of the US.

I got to see my children interact with my grandparents–the youngest and the oldest of the family. My grandfather took out his dentures to show W–who promptly ran to me and held on. I guess he thought he’d get bitten. For various reasons, I was bottle-feeding L and it has been a cherished memory, the sight of Grandmom, holding her and feeding her.

W took his position as the older brother seriously and was always helpful–bringing me diapers or a burp rag. He was always gentle with her and I enjoyed watching the two of them, learning about each other. BUT! L’s personality was already manifesting itself: she could be extremely vocal about the things she wanted (even if it only was in baby-babble) and I told her father that one day, our child would come running into the room, crying and saying, “SHE hit me!”. (I was not wrong.)

As a stay-at-home Mom (SAHM, so I’ve heard is the acronym), my world revolved around my children. Taking care of them (and their environment) was a major priority. I wasn’t chained to them, there were no bad feelings about being at home. As a matter of fact, I thoroughly took pleasure and joy in being with them, in the daily routine. And a daily routine with a baby and a toddler is a study in changes and discovery. (I don’t mean diaper changes, although we had those, too.)

I tried to mark in my own mind each of the many milestones, for both of them. The first food, the first drinking from a cup, the first step…so many “firsts” it could be overwhelming. I’d be marveling at one and then BOOM! We’d have another. Even the “firsts” I had had with W were different than those same things with L. And I loved every minute of it.

The whole world takes on a new, lustrous and exciting feel when you are seeing it through the eyes of a child. Even explaining and talking about the mundane things they were doing, I knew that “mundane” was my word and “wowee” was theirs. I took the time to explore their world as they explored this big world they were living in. The trees are a little taller, the grass a little greener, the dog or cat a little fluffier and softer.

As time passed (as it is wont to do), the “first” events slowed down a bit. I had a chance to really savor it and even catch my breath before the next one came along. L was my dramatic child. Supporting evidence: she was in the high chair, W and his friend were seated on the bench and W says to me, “Mommy, (L)’s face is blue.” Mommy went into freak out mode because when I looked at her, by the gods, she was blue. A blue that no human face should ever be. I pulled her out of the high chair and that action knocked the food loose so that by the time she was in my arms, she was breathing again.

She wasn’t done with us and high excitement. Not too long after the high chair episode, she was coughing and hacking around the house. Friday afternoon, of course. Did I mention we were living in Germany and had military healthcare? No appointments over the weekend. So her father and I both agreed we would be taking her first thing Monday morning. That apparently did not meet with her agenda… I was downstairs at the neighbor’s house when the husband knocked on the door, holding L. “You need to go back upstairs to be with W. I’m taking her to the ER. I was changing her diaper and she stopped breathing. I had to resuscitate her.”

These are not words you ever want to hear. The wait was horrendous. Husband came home, without L, about 10 pm. The hospital had done an xray of her esophagus. If this (      ) is the normal esophagus, hers was like this (XX|XX) where the “|” is the actual opening for air. No wonder she was not breathing well. Turned out, she had the croup. Poor baby got shots in her thighs every 6 or 8 hours…and the medical team had asked her father to help hold her down for the first couple. When I went to see her, she very pointedly refused to look at her father. I think I lost some popularity when I didn’t grab her up and take her home. Scary, scary times for a mom (and a dad).

It’s not like W didn’t have excitement. No, his was of a different style. When they were tweens, we accompanied their father to an office party at the boss’ house. There was an above ground pool. It is pertinent to the story to understand that in this circular pool, in the center, there was a slight dip so that all the dirt would collect in that one place. My son dove in and found himself standing within that dip. It made the water just *that* much too deep for him. I saw him, thought he was play-bobbing up and down and then I realized that he was in danger. It’s true: people who are drowning are NOT yelling for help. Their arms go out, up to shoulder height and they spend all their energy trying to catch a breath. I had a glass glass in my hand and didn’t want to drop it (making another hazard) and by the time I found a place to set it down, I heard a splash. Husband had gone into the pool (clothes, watch, wallet and all) and got W out of the water. Let’s just say that W didn’t dive in again and it took a while before he got back into the water.

I know it sounds melodramatic, but…except for the quick response of their father, there would be a very good chance that both of my children would be dead. And that thought still makes me shudder. I don’t want those scary times. But you don’t always get what you want…

At 14, L broke her arm, rollerblading. When he was about 3, W fell and cut the skin on his forehead/hairline. Head wounds bleed a lot, but a simple butterfly bandage fixed him up, no problem. I don’t remember any other medical emergencies, so I guess we were blessed with reasonably good health and a bare minimum of dramatic sickness or injury.

W went to Kindergarten and I had two school years of having just one child at home all day.  Then it was her turn and L went off to get some edumacation, too. For the first time in 7 years, I had days of being “single” again. Odd feeling and I got a lot of reading done. And handicrafts. And I could grocery shop without threatening my offspring for getting away from me. Or having to explain 469,756 times why I was not buying (X). I missed them.

Christmas time was always fun. I decorated our house and as the lights went up on the other houses, we’d ride around at night time and “ohh” and “ahh” over them. When they were little, we had some serious discussions about what they would like Santa to bring. The ToyRUs catalog would arrive and they both did the “I want this…and this…and this…and this”–you get the idea. So I would ask them the Big Question: “If Santa could only bring you ONE present, what would you really, really want to have?” They generally got whatever that one thing was–and Santa did bring some other things, too. But Christmas morning, Santa’s presents were always wrapped in Santa paper. The other gifts were from Mom and Dad. (And then we’d go over to the husband’s parents house for Christmas with the whole family. And when I say whole, I mean siblings and their spouses and children as they came along…and considering the number of siblings was 7…lots of family!)

We’d let them stay up long enough to see the ball drop on New Year’s Eve. There were a number of years where they didn’t manage it and had to be carried to bed. The Easter Rabbit hid eggs and treats all over the house. (I didn’t want to encourage animals coming along and eating them.) One year, he left plastic eggs with hints left in them–and when they got to the end of the treasure hunt, there was one special gift for each of them. (Actually two hunts, if I’m remembering right–one for L and one for W.) Halloween was also celebrated and one year I made their costumes–Robin Hood for W and Maid Marian for L. They were adorable. But the amount of work was too much to try and repeat it–and they were happy with the Power Rangers costumes from the Halloween section of Party City.

We had one Halloween tradition that saved them from sugar comas. Keep in mind that we lived on a street that had other children, and they were allowed to go around the block and across the streeet, around the block. So that’s about 40-ish houses. Once they had gotten their loot, they brought it home and we dumped it out to make sure there were no razor blades. Then I would have them pick out the ones that they only had singletons of, as well as the candies that were their particular favorites. These candies (probably 25% of their take) went back into their bags and no one else ate them. The remaining pounds of candy (not kidding!) would go into my 26 cup Tupperware bowl…and fill it to brimming. Anyone could eat out of that. While their bag had candies, our tradition was that they could eat all the candy they wanted for 20 minutes. Then they had to go brush their teeth…not quite 20 minutes, but certainly enough to get the sugar coating off! Sometimes that might mean just 1 candy–something larger, or a lollipop that was to be sucked on.

And I had candies to nibble on for the next month. (They nibbled, too…but you know what I mean!)

They played tee ball; W went on to play on a team but L decided that baseball was not her thing. They learned to ride bikes, rollerblade, swim (not just walk into the water and get wet–or dive in). They went fishing at the family cottage near Dundee in the Finger Lakes. When we visited my family in Baltimore, they went to the National Aquarium and the Science Center in the Inner Harbor. (L tried to jump into the beluga whale tank. She is and was always a Water Baby, like her mother and her great-grandmother.)
(Ed. note: Here is the story, “Water Baby” , which is where I got that term)

We only had one computer, back in the “old days”. Which saved me from having to buy TWO computers and never seeing the kids because they’d be up in their rooms, surfing the Net. Nope, we had one, and it sat in the corner of the kitchen. I could keep an eye on them and they could go pretty much wherever they wanted–and there were sites that wanted a parent’s “signature” to ensure that the child was allowed there. The three of us learned about Internet research–and Google, when it came along. I answered all of their questions, but when I didn’t know the answer, the 3 of us would go on the computer and find it. They weren’t the only one who was learning new things!

We started getting the Nintendo gaming consoles, starting with the SuperNES and Mario. All 3 of us played–my time was mostly at night, once the kids were in bed. And if it was a rainy day, I’d let them play most of the day…but on nice (not raining, maybe even some sunshine) days, I’d let them play for a couple of hours. Then I’d say, “It’s time to quit and save!” — and I always got the cry of “Mooooom, it’s SAVE and quit!!” And back in those days, I could rent the games for a week–and sometimes, if the game was involved enough…I’d spend most of my free time playing.

When they were tweens, their father and I split up. (It took 3 YEARS to get the final decree, but that’s another story.) I moved out and took them with me, getting an apartment about 20 miles away from our old home. I was working nights, so I’d get home after they had left for school. I’d sleep until they came home. Then we’d spend a couple of hours together, have dinner–and I’d go back to bed for a 2 hour nap. I discovered that I couldn’t sleep for 8 hours, be up with them and then try to work an 8 hour shift. I needed the psychological effect of getting up and going to work. (Even if it was just a nap.)

They were good kids, taking care of each other and not having *too* many fights. Then I was invited to share my friend’s house and get a (better) job in VA. That was well out of the range that I could take the kids. It was a tough, tough, tough decision. But I finally figured that if I could get myself in a better place, I would be a better mom for them. So I left them, living back in the house with their father. It was only 8 months before he allowed them to move back with me. Rather, I should say, that he asked the children if they’d like to live with me and he barely got the question out of his mouth before they were both saying “YES!”.

So South they came. We lived with my friend, her 2 kids, her boyfriend and his 2 kids and then me and my 2 kids. We counted 11 people for Christmas (boyfriend’s ex-wife and mother of his kids and a friend from work with no family in the area). We couldn’t afford to buy presents for everyone…or so we thought. My friend came up with a brilliant idea and I pass it on to those of you who find it helpful. We loaded up everyone and went to the local Dollar Store. We bought 11 big gift bags and everyone split up to go into different aisles. The idea was that each person would buy one thing for each of the others–and so in the end, we each had 11 presents to open.

Eventually the three of us moved out of the commune (haha) and got our own apartment. I got a new job (I had been working at a place called Dominion, making flash memory) at the local assisted living center. I started courses on Network Security and Administration. One of my fellow students suggested trying for a job at the place he was working. I did, and thus began my tenure as a Customer Service Rep, making reservations for teleconferences. I left for about 18 months to work at the help desk of a company that was contracted to provide computer support for Congress. There was no place to move up, and so I returned to being a CSR at the same company. I had not burned any bridges when I left.

The kids continued growing up and it seemed like it had only been a few days before that they were being born and being toddlers… They both participated in the Junior ROTC program at school; they were both actors in several of the school’s plays. W actually got the high school version of an Oscar nomination for his portrayal of Modred, King Arthur’s nephew (and son) in the musical, “Camelot”. L got her starring chance in her senior year with “The Hound of the Baskervilles”.

In the twinkling of the eye, in the space of time for one breath…they went from helpless, wide-eyed newborns to being teenagers and on the verge of going out into the big wide world on their own. I loved every stage. I was and still am grateful for the discoveries we made together. I was the best Mom I knew how to be and I must have succeeded because my two wee ones are all grown up now, with wee ones of their own. And I look into the face of my daughter’s older daughter … and see my daughter there. I can do the same with my son’s son. Both of those grandchildren have a younger sister. I am blessed with a foursome of proof that I did a good enough job that my kids were willing to try that role for themselves.

And yet I still miss my own little ones. Even the throw-up and backtalk and bickering between them. I’d like to go back in time and visit them again–and I’ve found a way to do that. I simply close my eyes and let the images scroll through my mind. My son. My daughter. And the 20 years that flew past like an express train. They were both very good children. They are both very good parents. I can only wish them the same joy with their children as I had with them.

My Grandmother, Pauline Baker Foote, 1914 -1992

Today is my grandmother’s birthday. She would be 102 years old. She died in October, 1992 at the age of 78. It’s been 24 years since then. I miss her as if it were yesterday.

Grief never really goes away. You learn to live with it, you learn that it really won’t kill you, you learn to put it away into a tiny corner of your heart. But then something triggers a memory and the grief comes galloping out, as if it had never been there before. This sudden swell of grief can make you staggered, make you cry, make you angry at a Universe that took someone away from you.

My grandmother’s name was Pauline. Nobody called her that. To most of her friends, she was “Polly”. To a select group of longtime friends, she was “Bunny”. (That’s because my grandfather called her his “Honey Bunny”…and it stuck.) To me, she was “Grandmom”…there is no greater way to name someone like her: Grand Mom.

Without going into the gory details, let’s just say that my parents don’t like children as children; they are supposed to be little adults. Of course, that’s a ridiculous demand; children are children, or they’d be called adults right out of the womb. All that growing and learning stuff to do, you know. I am grateful that they had me (and my brother) but…if it weren’t for my Grandmom, I would have a lot more mental issues than I already do. It’s not that my parents were not caring or loving. But they were authoritarian enough that the military regimens had no horror for me and in fact, I found boot camp to be more free than my childhood years. How sad is that? But let’s not talk about the ‘rents. This is about my Grandmom.

She had a life before I showed up, as amazing as it seems. She was born in Portsmouth VA on February 20, 1914. That’s just a few months before the start of World War I. Her parents lived long enough that I got to meet them…when I was 4. I have a picture in my head of a tall, thin man and a short, round woman…and having to look up up up to see his face. My great-grandmother died in the ’70’s, while we were living overseas. My great-grandfather lived until I was 16…and it was amazing that this oh so tall man was now eye to eye with me.

Grandmom did all the things that people did, back then. She had something called a “Baby Party”, where everyone dressed up to look like babies. Don’t judge, this was before the Internet. (Found a mention of these from the Wheaton College records, where their first Baby Party was held in 1914. It was part of the “moving up” of juniors to their senior year. Apparently something of a tradition.)

She had a younger brother, named Hugh. I don’t remember him, although apparently I had met him, probably at about 3-4 years old. Grandmom told me later that he like to eat mac’n’cheese cold. I tried it that way, and that’s something I still do these days. A connection to my past, even if I began it on secondhand knowledge.

She met my grandfather when she was 16. He knew that she was The One for him. But he was 20 years old, so he waited several years for her before proposing. When Grandmom graduated high school, she went to work for the the Baltimore Steam Packet Company, nicknamed the “Old Bay Line”, as a secretary. (Click here for more about the Old Bay Line ) At some point, she was in a beauty contest and was Miss Portsmouth, about 1930-32. I can’t say for sure, but this may have been a local pageant that led to the Miss Virginia pageant.

My grandfather had a picture of her on his dresser, taken when she was a teenager. It could have been a photograph of me, there was that strong a resemblance. But I’m not tooting my own horn when I tell you that Grandmom was beautiful. Lovely dark eyes, dark brown hair, nice legs…but what made her truly beautiful was the love that poured out of her, that shone in her eyes, her entire life.

I met my Grandmother when I was born. Needless to say, I don’t remember it. I have snippets of memories, like snapshots in my brain, of her and her house from about 4 years old until…I could remember whole movies. My family lived overseas from 1966 until 1971 and again from 1973 to 1976. So a great deal of my childhood was spent too far to see her on anything resembling a regular basis. I do vaguely recall my mother’s friend taking us from the airport to my grandparents’ house and surprising them early on a Sunday morning. They didn’t go to church that day.

When we finally came back to the States to live, my father gifted my mother with living close to *her* mother–and when I say “close”, I mean 5 minutes’ of walking across the elementary school’s property and up through the alley, then down the alley to Grandmom’s house. My parents had actually sent my brother and me home in the summer of 1976 so that we would be in the US for the start of school. So he and I lived with our grandparents all that summer and into the fall, until my parents came home.

My grandmother was the most loving, most patient person I have ever known. I try to be like her. She had the amazing gift of “just listening”. People, all sorts of people, would come to her and pour out their lives. She just sat and listened. The few words she would speak were always loving and wise. She would babysit for anyone she knew, so there was a crib permanently set up in the back bedroom. She kept clean sheets on the double bed that was in the same room, as well as on the single bed in the other bedroom, just in case they were needed. That smaller bedroom was my room whenever I was there.

When I think of “home”, it’s always her house that appears in my mind. It was (and still is) a red brick “row home”, the Baltimore term for what is called “townhouse” or “condominium” in other places. It had a wonderful basement. All sorts of things, on shelves, in boxes… A couple of chest freezers (she had begun with one, but when it no longer stayed cold enough, she added the second and used the older one for things that didn’t require deep cold, like bread) that could have been used to hide bodies… A player piano, the old fashioned kind with the feet pedals to pump the air to make the music. It sort of worked…until eventually the bellows got so full of holes, it wouldn’t play on it own. I learned to play the piano on that.

There were stacks of comic books, a favorite activity for any child–and even for teenagers. There was an old Lionel train set…had to use steel wool to get the rust of the tracks before you could even hope to run it. And there was a bench that had storage inside of it. Flip up the seat and enter Fantasyland…that’s where she kept all sorts of things for “dressing up”. My friends and I played with those quite often.

The first floor was your basic kitchen/dining room/living room set up. The kitchen was smallish, with limited counter space but in a way that was good, because it meant few steps between tasks. In one corner there was a hutch…and on that hutch were 5 glass jars, with glass lids, in graduating size from about a gallon, down to about 2 cups. In each jar there was some type of candy: Hershey’s mixed small chocolate bars (milk chocolate, milk chocolate with almonds, Mr. Goodbar and Krackle); M&Ms (always) and then the other jars held whatever else sweet they wanted, like spearmint leaves or Canada Wintergreen Mints (or as we called them, “pink mints”, for they would leave your tongue Pepto-Bismol pink). My granddad kept some bull’s-eyes, a caramel wrapped around a white sugar icing. Sometimes there would be a package of Oreos or sugar wafers in the biggest jar.

Upstairs were the three bedrooms and the bathroom. And there was a set of stairs in the hallway ceiling, the kind you pull down and can then go up into the mysterious attic. Not quite as much fun for kids as the basement (and the candy in the kitchen), but still an adventure to have. Just a regular row home, nothing special about it…but because my Grandmom lived there, it was MY home,and it was also the childcare center, the hotel for wayward souls, the counseling center…

If someone knocked on the door, they were always invited in. (Thank goodness we didn’t have vampires in the neighborhood.) My Grandmom always had a pitcher of “Southern” iced tea–you know, with sugar–and everyone would have a glass of it. She actually crocheted what we called “pants” for the glasses–think coaster with a wall, going about halfway up the glass. Kept the condensation off the furniture. Any time anyone needed something, they could usually get it from Grandmom, if it was within her power to do so. A bed, a meal, someone to cry on, someone to share the joys of life with, a person so good, so giving that no one ever said a bad thing about her. Ever. And there are still houses today (that if I knew where they were) I could go to and say “I’m Polly Foote’s granddaughter and I need a place to stay” and get invited in without a second thought.

She and my granddad were both extremely active in their Presbyterian church. (I mention the denomination because she had been Baptist and my grandfather Episcopalian…Presbyterian was the halfway point between those religions, so there they were.) Grandmom’s service to the Lord was often, almost always, done in the kitchen. She helped with church dinners, wedding receptions, and the Thursday Pancake Breakfast. For several years, the church offered teenagers pancakes before school. I first went when I was about 9 or 10. I helped my grandparents carry in supplies, I ate pancakes and helped them load the car back up. Eventually I was one of the teens eating pancakes on Thursday mornings. And it was free. The church paid for it all.

She was so much a part of the kitchen that when it came time to buy new dishes, she was the one who chose them. She taught Sunday School when she wasn’t attending her own Ladies’ Group. She worked at Vacation Bible School. She was, as they say, a “good person”, a “good Christian”. Yes, she was. But she wasn’t good because she was Christian. She would have been a “good Buddhist” or a “good atheist”…she was good. She just happened to be Christian.

Her heart was huge, large enough to hold the hundreds of people she knew as well as the strangers she met on the street, in the store… She glowed with love. No other way to put it. She was Love, personified. It drew people to her, to bask in the love of her heart.

And for me? Well, it’s not that I *don’t* love my mother. But when I think of Mother, the source of all wonderful-ness, the person I want to be good for…I think of Grandmom. She let me prattle on about anything and everything. So did my mother. But Grandmom’s listening had a different feel to it, an intensity that my mother’s lacked. Sometimes I wonder how my mother can be as she is (another blog someday, when I’ve had my mood stabilizers, haha), coming from that home.

My Grandmom loved cardinals. She had one that she fed peanuts to…and if she was sitting out front, the bird would come and chirp at her. So she’d say “All right, I’ll meet you out back.” And by the time she went through the house, got a peanut and stepped out on the back porch, he was there, waiting for her. She also loved Canada geese and I cannot see a “V” of them without wanting to show her. She loved purple, something I obviously inherited from her! Being born in February, her birthstone was amethyst. Lucky! I now wear her amethyst ring, as well as an amethyst pendant and her gold bracelet…all the time. (I wear other jewelry all the time as well; getting any imaging done {x-ray, especially MRI} is a study in removing a pound of metal off my body. Okay, I’m exaggerating…but the count is impressive: 7 earrings, a tongue ring, 2 rings, 6 bracelets, 3 necklaces, an ankle bracelet and a toe ring. I’ll be able to trade with the natives for food and blankets when I’m on a trek.)

Grandmom was not a trend-setter. She dressed like…any other grandmother. (Side note: she still had her wedding gown, a glorious, gorgeous heavy satin gown; I tried it on when I was 17 and thin…could not get the waist of the dress past my shoulders.) She was petite, standing only about 5’3-4″. She, like so many of us, weighed more than she had as a young woman…but she was a joy to hug. She was a champion back-scratcher. Even after 50 years in Baltimore, she still sounded like she had stepped off Tara just yesterday. Soft spoken, Southern accent…when I worked at an assisted living community, all those little old ladies, with their white hair and their Southern accents always reminded me of her.

She was generous in a way that has nothing to do with money. She was generous with her love; she was generous with her home, but most of all, she was generous with her time. That’s something most people do not, cannot, do. She was thoughtful and she was wise. She was kind, the sort of kind that we sorely need in the world today.

She was my Grandmom and I miss her. Happy Birthday, Grandmom!

A Family Vacation, Complete With Mooses and Other Excitements

Starting before the vacation: I took Beloved to the hospital on Friday, Feb 28 with a fever of 103 degrees, chills, vomiting and pain. Before he was done, he had been given about 14 litres of fluids (IV), pain meds (IV) and super antibiotics (IV). He figures he got stabbed with needles about 40 times in the 5 1/2 days he was there. If he wasn’t needle-phobic before (and he was), he is absolutely needle-phobic now. Doctor’s diagnoses: strep throat and cellulitis. (Medical note: cellulitis is an infection (“-itis”) in the cellulite layer of the skin. It has nothing to do with weight as both fat and skinny people can get it. It hurts like hell.)

We were concerned that he would not be out of the hospital before Thursday, Mar 5, but he managed to come home on Wednesday. So he got a better night’s sleep in his own bed before we began the Grand Tour of Local Restaurants.

Because of our disabilities, and especially with him just out of the hospital, we can’t really “do” all the tourist-y things when people come to visit. We can’t walk up the Avenue of the Redwoods, go into most of the shops in Old Town Eureka, or any other activity that requires standing/walking for extended periods of time. (And for us, extended is pretty much anything over about 15 minutes. Sigh.) But we bygods make sure that our visitors are well fed, and in a wide variety of cuisines.

So Beloved’s parents (hereafter referred to as “MIL”, Mother-in-love, and “FIL”, Father-in-love) landed in Sacramento on Wednesday the 4th, spent the night there and then drove up to Eureka on the 5th. They got in about 5, giving us just enough time to get them settled in the hotel and then taking them out to the beach for the sunset. (A tradition for us, since the first thing we did once we got settled in the hotel upon *our* arrival was to go the beach for the sunset.) And then we took them to the same place that was our first introduction to Eureka, Annie’s Cambodian Restaurant. Amazing and good, not quite Vietnamese, not Thai, not Laotion, but a sort of blend of all three. Annie’s crab puffs are the best we’ve ever had. Of course we also established the sharing all around of every dish, something done pretty much everywhere we ate in the 9 days they were here.

Because MIL and FIL had a car, they could do some sight-seeing on their own and they did so enthusiastically. They drove north to the Avenue of the Redwoods; walked up the hill and back down again, went on the skyway tram to view the trees from above. They were going to drive on up to Oregon (a short jaunt) but the fog came rolling in so fast and so thick that the decision was made to come back to Eureka. What’s the point of going anywhere when you can’t see anything?

They did a lot of poking around in Eureka on their own. When we joined them (mostly at meal times) we rode with them, rather than taking two vehicles everywhere. So MIL, who does the driving, got a good feel for the traffic and how the streets are laid out. That’s a really good thing because they are considering moving out here, to be near to us and to get out of the hell most people refer to as “Northern Virginia”, or NoVA for short.

EurekaSailorWe got to see the old sailor sculpture in the harbor, something I had only seen pictures of before. He is much bigger than I was imagining and I had Beloved take some photos so that I can attempt to paint or draw him. I’m sure that he’s been recreated in pretty much every medium, but I haven’t done it yet so I’m not worried about other people’s paintings or sketches of him. Driving up to the sailor took us through some protected wildlife lands, actually fenced off with signs about not crossing over the fence. We saw a pair of elk, which my MIL laughingly refers to as “mooses”. So now we’ve got a new word for when we drive out looking for wildlife… we are looking for those mooses!

Like I said, we began with Cambodian food. We also fed them Chinese (two different restaurants, one which does “comfort” Chinese, the sort you’d be used to if you ate Chinese food in the 1970’s; the other is familiar but doesn’t fall under the “comfort” heading. They also do sushi, which we made his parents try…and it was not something they really wanted. That removed the two sushi restaurants off of our list.); we fed them Vietnamese, Thai, Mexican, Greek, German, GREAT steaks, “American Diner”, pizza and one place for organic breakfasts and another for incredible bagels. We also showed them our donut shop which is run by Asians so you can get an order of Chinese food and then get a couple of donuts to go with it. They are, by far, the very best donuts I have had in a very long time. Dunkin’ Donuts got NOTHING on “Happy Donuts”.

We did show them some mundane things, like Costco, Walgreens, RiteAid and our Co-Op grocery store. If they move here, they’ll want to know where things of that nature are located. We also did some looking online at some rentals, to help them understand that with the enormous decrease in the cost of living (by coming to the West Coast, specifically Eureka), they can afford a 3 bedroom house for significantly less than they are paying for a 2 bedroom apartment in NoVA. And by significant, I mean anywhere between 4 and 6 hundred dollars per month less. We were not subtle in our hard sell, trying to encourage them to make the decision to move here, even though our friend had suggested subtlety. We don’t do subtle.

We were glad to see them–it had been almost a 1 1/2 years since we were last together, right before we moved. We had a really good time with them (and we ate really well!) but the physical toll was tremendous for both of us. I figure a healing and restoration time of at least 3-4 days, possibly longer. Fortunately, we have a minimum of appointments this week.

We had actually started our physical therapy (pool therapy), but with Beloved having a bazillion holes in his skin, I cancelled our sessions for last week and this week. We are scheduled to return next Monday, and we’ll see if we can make it. I need to call my psychologist and get an appointment with him, since I had to cancel the last one. Beloved sees his PCP, partly as a follow up to his last appointment with her, but also as a follow up from being in the hospital. He also has group therapy and his gaming group on Friday. So it’s going to be a very quiet week.

MIL and FIL took us shopping on Saturday at Costco and Co-Op to refill our larder and refrigerator. So we’ve got food–and we’re still working on leftovers–but how much cooking either of us is up to…is a good question and I don’t have an answer for that right now.

When they arrived, MIL handed me an Adroid tablet that FIL had gotten as a “retirement gift” and they couldn’t make it do very much. I’ve got it up and running, with various apps that I wanted and I’m pleased with it. Except for one thing: I cannot, CANNOT, make the damned thing acknowledge the 64G SD card I put in it, except as a storage unit for music and photos. And I’ve got enough apps that the internal memory is pretty much full; I’d like to move some of that over to the internal (already there, can’t be changed out) 4G SD card, but it doesn’t seem to want to let me do that. There’s got to be a way, otherwise no one would take the tablet because it wouldn’t/won’t hold all the apps wanted. Oh well, it’s an IT conundrum that I will continue to wrestle with.

I was very glad to have it because it was a calming thing for me to be able to use it, thereby tuning out all the people around me. My pain this week was high enough that even my Vicodin didn’t do much more than tone it down; with high pain comes a vague nausea, so I was eating just a little bit of this and that most of the week. I have had tremors most of the week, but especially during times of higher anxiety. When we went to get steak (at a place that is very carefully designed to look like a dive bar–but it sure isn’t because the bathroom is immaculate!), I actually had to put in my earbuds to block all of the noise. I was on the verge of tears without them. They worked so well, I have gotten a box of actual earplugs, in pink because they’re made for the ladies (we have smaller, more dainty ears!) and they came with a holder, so I can keep a pair in my purse and use them as needed.

Regarding the tremors: I talked to my dad about 2 weeks ago and we got to comparing ailments. He has tremors (bad enough that he can no longer make jewelry) and he suggested that what I have are Essential, or Familial, Tremors–something that is inherited 50% of the time if you have a parent who has them. The doctors don’t know what causes them and there’s no real treatment, although there are some medications for people whose tremors have gotten significant enough that they are embarrassed by the shaking, like when you’re out with people at a restaurant. I know that I have problems holding a fork steady without being stressed… add in the anxiety and I can barely get any food in. Takes two hands–one to hold the fork and the other to hold the food on the fork. I use my natural eating utensils whenever possible–you know, my fingers!

I will be asking about my tremors at my next PCP visit, if only to get the proper diagnosis added to my (ever-growing) list of diagnoses. And speaking of doctor’s visits, my long term disability  (LTD) insurance company (Reliance) has found a doctor who will do an independent evaluation of my condition so that the company can make an assessment about whether I am really disabled or not. And if I am really disabled, according to them (because I am, whether they want to say it or not), they will send a check with a year’s worth of backpay, and then continue with a monthly check. And if I get SSDI, the LTD will pay the difference between SSDI and the insurance benefits, which means about $400 per month more. We sure could use it.

I have two weeks to gather any paperwork (like my health records) and fill out the forms the doctor’s office sent me. I think it’s the new patient forms–and there’s all kinds of mentions of being able to go after the patient for money if the insurance company doesn’t pay for it. HAH! They can try. We already have about a quarter of a million dollars in combined *unpaid* healthcare costs. We’re going for bankruptcy… hate to do it, but we need to “wipe the slate clean” so that we can eventually qualify for a mortgage. I have a pre-approved VA loan, as long as what we want to move into meets their requirements. Needless to say, we need our home to be ADA compliant–and I might start looking around to find out what kinds of grants we can get that would help with the costs, especially since we’re talking about getting a new house. We’ll buy land and then have a manufactured home delivered there. The VA’s requirement for railings on every stairway will not matter, since we’re going for a single floor.

I’m not sure what was harder to deal with this past couple of weeks: the pain or the stabbing awareness that I can no longer do a LOT of things I took for granted as recently as 2 or 3 years ago. Watching my MIL (65 years old) and my FIL (almost 80) walking into the stores, carrying OUR stuff upstairs so that we wouldn’t have to…real slap in the face, let me tell you. Makes it very easy to slip into despair, since I’m already chronically depressed. I really appreciate my meds because without them…and I don’t mean the Vicodin. So recuperation, such as it is, consists of keeping my movements to a minimum to help control the pain as well as doing meditation and some self compassion exercises to help control the negative feelings. (Check this out, from Toni Bernhard: How to Talk to Yourself . Toni suffers from chronic illness, but also uses her Buddhist beliefs to find that Middle Road, even for us, who are having to ride an accessibility scooter on that road.

So that’s where I’m at, just trying to keep on making it through life, one day at a time.
Namaste!

 

Disabled or…UNable?

So here I am, at the end of week 3, still waiting for some word about my SSDI and whether I’ll get it or have to go to the appeals panel–which could take another couple of years. I began this Death March of Bataan through the application/appeal/adjudication process 3 years ago. I should have Long Term Disability (LTD) benefits still being paid, but the insurance company decided that there were 3 jobs I could do and kicked me off the small raft that had been helping us stay afloat in the sea of financial necessity. So here we are, living on Beloved’s SSDI and the incredible generosity of his parents who throw money our way with an embarrassingly often frequency.

Everything occurs for a reason. I believe this completely. It doesn’t mean that I have to like the occurrence. There is a lesson to be learned from all that happens in our lives, and I am learning a hard fought and almost overwhelming lesson this time around. It began with my diagnosis of fibromyalgia and has only gotten more and more intense as it goes on.

The doctor told me I had fibro and I arrogantly stated that I would not let my disease define me. First lesson: my disease defines me, defines my level of activity, defines almost every single thing I do or say in some fashion. I learned to accept help from other people (mostly–I still ignore this one on too regular a basis and still pay for it in pain).

I began to take medicines and we had to try various things before I settled into my current regime. I’m not going to list all of that here–but let’s just say that when I go to a new doctor, or to the ER, I have to list my meds and it’s always a show stopper and impresses the staff. I resent the fact that I take 4, FOUR, medications specifically addressing mental issues: depression, anxiety, mood and sleep (or the lack and poor quality thereof). I take narcotic pain killers, but I have a very limited supply because the Veterans Administration (VA) healthcare is concerned that I will become addicted or sell them on the street or something. I need about twice the amount I am taking now; I was supposed to have a pain management team that would work with medications and various therapies (massage, chiropractor, physical therapy in a nice warm pool, STIM and TENS therapies and etc) but I haven’t heard a peep out of that group since they insisted I go to SF for an MRI which was done in May. Four months later and there’s nothing more done.

(Side note: I seriously doubt my propensity for narcotic addiction since my VA care provider in Fredericksburg VA stopped my narcs COLD TURKEY. And I didn’t have withdrawal symptoms at all. So there!)

I have learned that I need support when I walk because I’m very unsteady on my feet. I have learned how to be a cook, instead of a chef–preparing meals that are simple and easy to make, with a minimum of preparation–no chopping lots of vegetables into pieces to stir fry, no complex recipes that require more than about 4 steps. For someone who was at the point of trying a new career as a personal chef…this hurts beyond words. I love to cook, I love the creativity of putting things together in a new way, I love the satisfaction of feeding people and having them enjoy the food. In many ways, I am a true “kitchen witch”, pouring myself into the food I prepare to make magical meals for friends and family. I am happy when I cook. And I can’t do it now.

I used to have nearly photographic memory, a prodigious ability to recall, great concentration and instinctive multitasking. Gone, gone, gone and gone. I have an enormous vocabulary–but I “lose” words in conversation and writing…you can’t tell that some of my blogs took HOURS because I would want to use a specific word, a word I know, and yet for the life of me, cannot access in the dusty, messy library of my mind. And I have to stop, let go of reaching for the word and sort of think around it, hoping to lure it back into use. Like intentionally ignoring a cat, waiting for it to come to you when it realizes that it is not your focal point. And it can take just as long–as anyone who’s ever had a cat can tell you.

I used to enjoy groups of people, parties, dinner out, all that social stuff. Now crowds terrify me–and I consider anything more than about 5 people to be a crowd. Going to a store or a restaurant becomes an exercise in NOT looking around me too much, not letting myself acknowledge just how many people there are within my line of sight. I focus on my shopping, or on my meal. I will sit with my back to the rest of the restaurant just to be able to do this. And it’s not that I’ve suddenly become phobic of another human being–one or two at a time is not a problem. It’s just the larger the number, the greater the impact, the faster I need to go home to my nearly solitary nest.

And for those of you with a chronic disease, you will understand what I mean when I say it’s not just the anxiety of being around people. It’s also the great amount of energy that being social requires. The interaction, the conversation, all the little things that make up our social lives, takes energy. And frankly, those with chronic illness are made aware very early on in their trip on this road that energy is the one thing you will never again have enough of, that you will often lack to the point of poor personal hygiene and eating carry out way too often. It takes energy to hide the pain, to be polite, to speak at any length. And when I say “hide the pain”, I do not mean that you cannot share the pain or how much you hurt but when that’s about all you can talk about…people start to avoid you. Most do not want to face such an obvious reminder of the fragility of the human body. Some cannot believe that it’s all that bad when in fact, it IS all that bad. And because you’re not “out and about”, your actual ability to hold a conversation that is equitable with the person you’re speaking with becomes impossible. They talk about going places, doing things, meeting people. We the chronically ill are hard pressed to suitably astound someone with the mere fact that we took a shower today–although for us, it’s quite an achievement. And when asked, “What did you do this weekend?”, we recoil at giving the answer of “Slept most of it.”–AGAIN. The things we fight for, the efforts we make to gain some semblance of a life…are the mundane, unmentioned activities of daily living for everyone else. Taking a shower, preparing a full meal, going to the grocery store. These are major accomplishments for us…and so trivial as to not even merit mentioning to the rest of the world.

Over the past 3 years, I have developed an evolving and greater definition of “disabled”. Dis-abled, as in “not able”. You’re willing, but you just can’t. And “unable”, which means not able as well, but at least to me, seems to carry the faint hint that it’s a voluntary decision. “I’m sorry, I’m unable to make it to the party.” However…I can use both terms in their purest sense of “not able”. Fibro causes a variety of disabilities and my physical condition makes me unable to do things. I have debilitating levels of pain, all the time. Pain has been my constant companion at some level, for all of my life. Lately, it demands most of my attention–and most of my energy trying to accommodate it and to live some sort of a worthwhile life in spite of it. Not a whine or seeking sympathy, just a matter of fact explanation of the worst symptom I have. Chronic fatigue, poor sleep, inflammatory bowel (and bladder) syndrome, depression, anxiety…the list goes on but pain tops it every time. It’s been in the “Top 40” (haha) longer than any other song. Gallows humor, but why not laugh at my problems, rather than singing dirges of doom and gloom all the time. I try very hard to not be the cranky, unpleasant sick person.

I had my SSDI adjudication 3 weeks ago. I went into the video conference room, dressed to carefully cover all of the tattoos, tongue ring removed, hair re-dyed a color I haven’t seen in 15 years–my (mostly) original natural color again. I answered questions, the judge talked, my lawyer talked, the vocational expert talked…the judge thanked us and left. I mostly saw the top of her head, as she did not make eye contact with me once the introductions were done. This may be her way of keeping aloof of emotional interference in her role as impartial arbiter of people’s fates…but it actually made me feel like a number, just another piece of paper, in her metrics for cases allowed versus denied. She gave no indication of which way mine would fall, just said that she would issue the decision. My lawyer says that she is known for this sort of passive-aggressive manifestation of power. I guess she does it to prove to everyone just how incredible a judge she is, weighing every case so very carefully…and it might be more impressive to me except that according to the SSA’s own rules, I should not have been denied upon my second appeal (the last step prior to this one) because I am old enough and cannot even do “light” work–which involves being able to lift 10 (maybe 20?) pounds…for at least 1/3 of an 8 hour shift. But someone else decided that just maybe I could, so…denied. And there I went, into the adjudication circle of Hell. (By the way: a gallon of milk or water weighs 8 pounds. That is now a two-handed lift for me and I cannot repeat it more than two times.)

I thought waiting for the adjudication was bad. I thought waiting for the adjudication without my LTD benefits was worse. Well, the worst thing of all is the wait, with no specific scheduled end time (like waiting for the hearing), for the decision. So much depends upon this coming to me in a very timely manner. I will appeal my LTD dismissal–and I only have 180 days to do so, which ends sometime in November–but if I can send the SSDI certification of disability, it’s pretty much a done deal and they will have to reinstate the benefits–until 2028, when I turn 67 and “retire”. It means the difference between SSDI and what the LTD benefits by themselves had been, which results in a net increase in our income of several hundred dollars a month. And while that may not seem like a lot, when you’re talking about a combined family income of about $3500-$4000 per month (or about $48,000 per year), that “several hundred dollars” additional is about 10% or so of the monthly checks. Helps provide for things like upgrades on technology and other “little” purchases that can mean the difference between a bearable life and a pleasant life.

Beloved is OCD. He’s OCD about numbers. Money is numbers. Need I tell you that he is practically frantic with worry and not knowing how the budget will work? His mental illness manifests in his emotions…and he’s the cranky sick person. My worry always hits my stomach. I’m not eating well, not at all. In fact, a great deal of the time, I’m not eating. That’s bad. And what had been barely managed pain is totally out of control, as I have hit a full blown fibro flare-up that makes me the crankier sick person. The bottoms of my feet hurt to walk on. It hurts to touch my skin, anywhere I touch. Which adds another aspect to the disease: I long for, starve for skin contact. I am a tactile person–or in laymen’s terms, a “touchy-feely” kind of gal. I want my husband to touch me (and it’s not about sex, you perverts!) and to pat, cuddle, stroke, scratch my back. And he knows that it hurts me, so he doesn’t…and that hurts me inside, even as I understand his reasoning–and I can’t really find fault with that decision. It’s not him, it’s me…he is trying to avoid inflicting more pain and my damned disease (double damned, triple damned) prevents me from being able to have anything resembling the normal intimacy of love and a committed relationship.

I am nearly frantic with worry…not just for me, but because this is also affecting him so deeply. I mean, I know that of course it would. It’s not just that it affects his standard of living, which it does, but that it affects ME, his chosen wife. So we’ve got this cycle of being concerned about the decision itself as well as the escalating damage it’s causing to each other. I half joke that by the time this judge does finally render a decision, I will be utterly and truly disabled, beyond what I had when I saw her. Three weeks ago. Dear gods, it seems like three months. And theoretically, we have from one to three more weeks of dangling in mid-air before we do get the decision. Everything else is on hold. There are things we want to do, once we know about the money which are having to wait until we have the numbers. I have my LTD benefits dangling with me, adding another fishing weight to the pounds of weights I already had. I’m holding on by a thread and I’m afraid it’s going to break before the decision is handed down. At which point, Beloved and I will need adjoining rooms in the local mental health hospital–and matching fancy white jackets that let us hug ourselves.

I’ve been trying to maintain my “#100happydays” (see the website) during this time and frankly, it’s just not working out very well. The original intent of the foundation was to get people to slow down and see what in their lives makes them feel happy–and to acknowledge it daily, for 100 days. Most people drop out because they don’t have the time to do it…sad commentary on our society. My problem is NOT time–it’s the one things I have endless amounts of. It’s that the current situation is so taxing to my mental and physical well-being that finding things I’m happy about is hard or inane. “I’m happy I took a shower.” Yeah, and so are the people around me.

Another area of my life that’s taking a serious hit is my ability to stay in touch with my family. I have to deal with a time difference of 2 or 3 hours, depending on whom I want to speak to in addition to working up the energy for that conversation. It’s not that I DON’T want to talk to them, it’s the fact that holding a phone to my head for an hour hurts my elbows (because I switch arms to avoid completely destroying one). One of the things I want to get “when the money comes in” is a hands free headset to plug into the house phone, so that I don’t have to hold it. In the meantime… And there’s the inescapable fact that I lose track of the time and the days…then the weeks. Time slips away from me and I just don’t realize how utterly long it’s been since I’ve talked to…my mother, my daughter, my son, etc.

Worse yet is that I caused unhappiness in my son’s household…my fault totally and my daughter-in-love felt that she needed to “unfriend” me on Facebook. Her right to do so and I understand why–but she is my main, almost sole, connection to the Froggy grandson. I owe her an enormous apology and want to do it when I can talk to her–but I lack the actual energy to deal with this now…so time slips by and the wound has not been addressed, nor forgiveness asked. Not for a lack of wanting to…but for the physical inability…disability?…for me to do it. Just trying to write it here makes me weepy, so I think I’ll let this go for now. Hopefully I can repair the damage I did and we can knit back a relationship–or I’ll pretty much never know what’s going on with that part of my family.

So that weighs on me, lurking there in the back of my head. To say that my life is NOT happy at this point seems melodramatic, but it’s a relative truth. And one of the most aggravating parts of this dangling is that once it is resolved, hopefully for the good, everything else will start up again. My whole life is teetering in balance, waiting for one woman’s decision–and that one woman is unreachable, impervious to my plight and holds the outcome merely as another number in her record, to show that she’s doing her job oh so wonderfully. This is as bad as being told your lab work came back with some seriously bad numbers, but you’ll have to wait a month or two before you can see the doctor to find out if you’re going to die or not. The anxiety and fear that both of those situations cause is…pretty damned large and leaves no room for any other activity because if you move, you’ll break that thread.

I have a disability. It makes me disabled. I am unable to work and I need to have SSDI benefits in order to pay for the things that are required to live. I am unable to alleviate my husband’s suffering because of my own suffering. I am unable to move on with my life, being able to make whatever necessary accommodation I must to deal with fibro. I am stuck in a holding pattern (like an airplane) and I am running out of fuel. Dire and dreadful, yes. But “it’s always darkest before the dawn” and “you know a thing by its opposite” so if it’s real dark now, when the light comes–and it will!–we will appreciate it even more. As a Buddhist, I strive for the Middle Path, for balance, and for a simple life. Doesn’t mean I give up everything I own and become an aesthete. A simple life, a minimalist life, is where you have everything you NEED and an appropriate amount of what you want, and a few of the things you wish for–and not all the “things” are tangible. Part of the Middle Path is the lack of attachment to things–again, not always meaning tangible things like cars or fur coats–but the losing the attachment to whatever holds you back, drags you down, makes you live an incomplete life. I have a disability. I am disabled. But I am NOT my disabilities and I am not attached to being disabled. It is a state of living, not a definition of who I am. I am me, just me. I happen to be disabled. It means no more and no less than being brown-eyed or having tattoos.

I share this with you all not because I’m looking for a pity party…but because I know that there are others out there who are also dealing with disabilities, with dark times. I would hope that you could find your own Middle Path, the way through and then out of the darkness–and I suggest that sharing gives each of us a little candle, glowing in the blackness like a beacon. Enough candles will destroy the darkness. I share mine with you, and hopefully light your candle so that you can see there is a way out. Namaste!

It’s Not Easy Being Zen

I started this blog over 2 years ago. I had no idea when I began it that I’d be where I am at this point of my life: mentally, physically, spiritually. It’s been a rough and gritty road, with some sizable potholes. It’s also been a while since I actually wrote about what’s going on with me, fibromyalgia-wise. So let’s address that.

First, let me update you on my medications list, which is quite a feat to be able to recite the names, doses and such. Much longer than I’d like it to be, but I am thankful that every med seems to be doing what it’s supposed to and that makes life better. So let’s make a list of what, how much and what it’s for:

AM Meds:

One Gabapentin (Neurontin), 300 mg, for neuropathy; also acts as a mild anti-depressant
One Hydrochlorothiazide, 25 mg, for swelling; it’s a diuretic
Two Hydroxyzine Pamoate, 25 mg each, for anxiety; prescribed to be taken up to 4 times a day as needed
One Hydrocodone APAP, 5/325, for pain (aka Vicodin); prescribed to be taken twice a day for pain with an extra few for those really bad days when I need 3)
One Venlafaxine, 225 mg, 24 HR SA, for depression
One Lamotrigine, 25 mg, for mood stabilization

PM Meds:

Two Gabapentin (makes the daily total 900 MG; the two at night help with sleep)
Two Hydroxyzine Pamoate (also helps with sleep)
One Omeprazole20 MG for acid reflux/GERD
Two Trazodone, 50 mg per tablet, total is 100 mg; for sleep (specifically)
Two puffs, each nostril, Fluticasone, 50 mcg, for sinus and upper respiratory decongestant

And I have Clonazepam, 1 mg, as an “emergency” anti-anxiety, to be used as needed, but no more than one per day

Wow. Heckuva list. So let’s make a synopsis of what I’m taking all these chemicals for: I take two different medications for pain; I take two different medications for anxiety; I take one medication that is specifically for depression, but I have another that also has anti-depressive effects. I take one medication to help with the swelling in my feet and hands. I take one medication to keep me breathing (well, at least not as stopped up in the nose as I would be otherwise). And I take one medication for mood stabilization.

Let’s talk about that one for a moment. Lamotrigine is what my Beloved but bi-polar husband takes for his mental illness. He’s taking a way massive more amount than I am and it works well for him as long as everything else stays reasonably stable. He’s fortunate that in his being bi-polar, if things get out of whack, because the illness is brain chemistry, he can literally “reset” his emotions by taking a nap. (We all do that, did you know that? You reset your brain when you go to sleep. Probably because it runs on Windows 95, haha.)

So about a week after the Worst Thing happened (NO more LTD for me), I got a letter from the SSA with the date for my adjudication hearing with the judge. I have gotten a new lawyer, as the one in VA has formally relinquished the case–and waived her fee. I feel bad that she lost a lot of money on me and am very, very grateful for all that she did, for both of us. My new lawyer spoke to us for about half an hour, 45 minutes–and it was sort of an audition on my part, to see if he would take the case. He did, and seems very competent. I also figure that he wouldn’t take a case he thought he would lose.

[EDITED]

He did make a really good suggestion which is a better way to describe my disabilities, rather than just saying I have fibro. Frankly, that’s what my psychologist should tell me, but hey, I’ve only had one meeting with him and maybe he will talk with me about it. What I’m supposed to do is speak about what is currently disabling, in a functional (or in this case, non-functional) manner. This is going to be hard for me, because it basically is a list of all the things I cannot do, or cannot do without great pain or effort. I’m going to have to face up to the reality of my disability, which I have been kidding myself that I was doing, just by covering it with the word “fibromyalgia”.

My husband said to me, “You’re supposed to be a good Buddhist” and I replied, “I TRY to be a good Buddhist”. So I can use this as a chance for advancement on my spiritual path as well, if I can frame my life to be “in the moment”, which is very important to me. I believe in the NOW, each moment passing, never to be repeated, to try to live each moment to the fullest, with awareness and focus on that moment. (And then let go and move on to the next moment which has come.)

So here goes:

Hi, I’m Kate and I am disabled. I can no longer stand or walk for more than about 15 minutes without excruciating pain in my back and down my legs (sciatica); I also have neuropathy in my legs and arms. I have swelling and pain in my hands to the point where I am clumsy holding things and I have to be very careful with heavier objects or I will drop them. I cannot twist my hands to empty an ice tray without pain. While I am on the computer for most of my day, I have several different types of activities that I do which changes up how I am using my hands–I mouse for a while, I type for a while and I use a game controller to play computer games. I also stop and stretch my hands, or flex, then rub them, to ease the pain. I have both Irritable Bowel Syndrome and Irritable (Stress) Incontinence, which means when I have to go to the bathroom, I HAVE to go. I have very limited range of motion in my arms and can seldom lift them above my shoulders. Things put on higher shelves are no longer accessible. Pulling on clothing over my head is done by putting my arms in the sleeves and pulling everything up to the shoulders, then ducking my head into the neck hole. Activities of Daily Living (ADLs) are difficult for me; combing my hair is tiresome because it requires me to lift my hands to brush the length. I shower when I have the energy to deal with all of the bending and stooping, scrubbing and hair washing. I have stopped wearing a bra because I cannot put it on by myself. I have also stopped housecleaning for the most part, only dealing with dusting, sweeping, cleaning the bathroom and etc when the filth passes my point of being able to ignore it. And I still do it the way I have for the past 20 years–do about 20 minutes of cleaning, then sit and rest for a while, then do some more cleaning and repeat the pattern until the task is done. Or I’m in too much pain to continue.

I have depression because of my pain and the various occurrences related to my disability, such as losing the LTD disability benefits. I have contemplated suicide more than once and have thought about how I would do it. My most recent suicidal ideation (great term, huh?) was when I got the notification that I had lost those benefits. If the Pacific Ocean wasn’t so damned cold, I’d have just walked into it and kept going out to sea. Truth: I don’t want to be dead. I just want the pain to stop, I want the uncertainties about money and our lives to settle down. I want peace.

I have anxiety, duh. Problem is, it interferes with my life. I am developing social anxiety; I hate to be out in a crowd of more than about 8 people. Small crowd. And very ironic, since my life has been filled with people–I have spoken to large crowds, I was responsible for the local Pagan group back in VA, I had a weekly dinner date with my friends–and we could be as few as 3 and as many as 20. Now I begin to freak out if there’s more than about 3 or 4 people around me, like you would have at a dinner table. I often don’t really want to leave the house–not quite agoraphobic, but definitely not good. This limits me in so many ways–I have no friends here, just the wait staff of the various restaurants we go to, or the staff at the grocery store. But nobody that we say, hey, let’s get together.

I would attend services at Humboldt Unitarian Universalist Fellowship, but all too often, one or the other of us is not up to going. So neither goes. Lots of nice people–completely overwhelming to me. But probably our best chance to meet friends, people we can hang out with and do things with. Beloved wants to get back into his gaming (table top RPGs, with paper, pencils and dice; NOT D&D). If he does, I’d probably go along and play, if only to keep myself from becoming totally a recluse.

I can no longer play the piano. I cannot knit or crochet or do other fine motor crafts for more than the time to do one row of knitting or crochet, or about 20-ish minutes of fine motor work like making chainmaille or jewelry. These are all things I used to do. I can’t talk on the phone comfortably if I have to hold the receiver to my ear for more than 15 or 20 minutes. (Which means when my mother calls, I switch hands a lot.) Even if I were not taking narcotics, I would still be very careful about driving since I have limited range of motion with my neck–you know, turning it left and right. Looking back over my shoulder is almost impossible. With my limitations, I am always afraid that I will have an accident because I cannot react fast enough, or fully enough, to avoid it. Beloved does almost all of the driving. Only on his really bad days do I get behind the wheel–and he helps me watch out for possible dangers.

There’s also the whole loss of concentration and ability to deal with details as well as a certain amount of short term memory loss/lapse. I am easily distracted from whatever I am doing–and just going from the bedroom to the kitchen (about 20 feet) means I can forget what I’ve gone in there for–and cannot recall it, no matter how I try. This is particularly vexing for me, as I used to have nearly photographic memory. Well, my shutter speed is way down, let me tell you.

I’d love to be able-bodied, to do the things I used to do, to do the things I want to do. But that’s not my reality. And I don’t write this all out for you to feel sorry for  me, or to gain your pity. I’m just trying to explain what my life is now, in this moment.

There are good things as well, really! We’ve been going to the beach more often now that the weather has warmed up. We’ve seen pelicans, a seal, a fish that made the mistake of biting onto the bait of the surf fisherman. Lots of dogs, since there’s no prohibition on them being on the beach. We’ve seen a horse and rider enjoying the fun of trotting through the edge of the surf. I’ve even managed to pick up some driftwood and seashells–razor clams and even sand dollars.

Being with Beloved is always fun, even if we’re just doing the parallel play thing, with both of us on our computers and no particular interaction until one of us wants to share a meme or an article. We go out to eat when we can afford it and we enjoy sharing the meals and making our critiques of the food.

I am especially grateful for a healthcare team that works with me to deal with these realities of my disability–my Primary Care Physician, my psychiatrist and my psychologist, the PCP’s nurse (who is a dear!); the front desk staff, and just everyone I’ve come in contact with when I’ve gone in for an appointment.

I enjoy the view out my window. I watch the birds, occasionally get a glimpse of an egret flying by. I watch the trees blow in the wind and I’ve watched the flowers blossom, each according to their time. Rhododendron is a major “thing” out here and there’s lots of it, in different colors. It’s time for hydrangeas now. I’ve also seen a hummingbird. I’d like to put up a feeder for it, but haven’t gotten around to doing what that requires. C’est la vie.

Thanks to Facebook, I am actually in touch with my friends from VA almost more than when I lived there. Daily posts and shared items make my day better.

So I’m reaching the limit of what my hands can take and rather than save this as a draft, I’ll finish it up and post it out. Yes, I have my limits. So does everyone else. My biggest goal right now (behind winning my adjudication hearing) is to find something that I can do for fun, just for me. See, my psychiatrist asked me the other day, “What do you do for fun?” and the first answer (which you should always go with) that popped into my head was “Not a damned thing.” Time to change that. I’ve got several possibilities, just a matter of seeing if I can manage them within my limitations. I want to try watercolor painting and even have a “how to” book to start it with. I’m also trying to do some sketching. Nothing major, just little doodles to get used to drawing again. We’ll see.

So this is where I am, and with the oh so helpful chemicals in my system, not doing as bad as I was a week ago. I’m Kate, and I’m disabled. But I can still enjoy the perfection of each moment as it comes along, whatever comes with it.

Namaste!

The Lost Child

Start here: Miscarriage Stories

And then there’s this:

OrganDonorsandPregnantWomen

So the battle over women, their bodies, pregnancy and the rights of the unborn continues to rage.  You can’t use birth control.  You can’t have an abortion if it’s beyond a certain amount of time, or if you weren’t raped, or if the child is deformed or the product of incest.  You can have the child removed forcibly from your body without your consent (Forcible Cesarean) or if you suffer catastrophic illness, up to death (and resuscitation) and you end up in a coma, you can be kept on life support to be an incubator for your fetus (TX woman in coma) against your express wishes to not have your own life extended by artificial means.

But what about the women who desperately want a child?  Who are actively attempting to become pregnant and have every intention of carrying the child for 40 weeks to a safe delivery–and cannot?  The sheer numbers of women who are not able to maintain a pregnancy are staggering.  (Fertility Data )  A long time ago I heard that 1 in 9 couples are not able to have a child together (which includes male infertility as well).  That’s a lot of people.  It’s greater than 10% of the population–or to put it into more imaginable perspective: if you have a party and invite 10 couples over, at least one of those couples will not be able to have a child.  And most of us know at least 10 couples.

I was very, very blessed.  I have never had to go through the agony of a miscarriage; I got pregnant three times and I have three children.  But I know far too many women who have had to deal with this–and sometimes, more than once.  Even my own mother had infertility problems.  The fact that she and my father were married for two years before I was born (and no birth control during that time) and my brother is 7 years younger than I am indicates a less-than-optimal chance for pregnancy for her.  And she had a miscarriage between the two of us.

My father’s mother had a miscarriage between each of her 4 children.  My mother’s mother carried to full term a daughter with esophageal atresia  where  the esophagus does not grow down to the stomach correctly–and this was in the 1940’s.  So the surgery they do to correct this today was barely out of its own infancy at the time.  My grandmother comforted herself by thinking that perhaps my aunt’s surgery, even though it was not successful for her, gave the doctors greater knowledge and ability so that they could save other children.  

And when we visited the cemetery where my grandparents were eventually buried, we always went to look at my aunt’s tiny grave, in a row of children’s graves.

Of course I have also had friends who miscarried.  So I have been a bystander in the sorrow of losing the promise of child, the hope of a baby that you’ll never know.  I cannot imagine the feelings involved and I prefer not to try.  Once I had my own children, I couldn’t bear to even think of anything bad happening to them.  I would weep just from news stories or magazine articles that dealt with childhood traumas and accidents.

A friend share the article above and coupled with the photograph, set me to thinking about all the “stuff” that goes on around pregnancies.  I can understand why there is a hesitation about announcing a pregnancy until the child has settled in solidly (so to speak).  It begs the question of whether this generation of women is having more miscarriages than women did before all the industrial agricorp foods, with the myriad of chemicals added to everything, the state of our environment and the lack of pure, unadulterated drinking water.  I’m not even sure where to start that kind of research and find numbers to put in this blog.

Regardless of why it happens, there are many reasons for miscarriage–or what can also be accurately called “spontaneous abortion” because the body itself will expel a fertilized ovum when the zygote has no chance of survival out of the womb.  (One of the odd biology class facts I’ve retained since high school (back in the dark ages, haha) is that 80% of all conceptions end in spontaneous abortion. So the fact that we even can get pregnant and stay pregnant long enough to increase our population only attests to how much loving is going on.)  The reason for your miscarriage may be different than the reason for your friend’s–or maybe there’s no understandable or knowable reason at all.  The point is, miscarriage is a very common occurrence…but that doesn’t make it any easier for any woman who has to go through it.

I ask you, then: why are so many women silent about what has happened?  There is no shame in a miscarriage; no stigma in the loss.  Or did I miss something?  I seem to remember my mother, and her mother, talking about miscarriage in a normal tone of voice–not a hushed, secretive voice.  Someone had miscarried and while that was very sad, it wasn’t a rare or unknown event (sorry to say).  When did it go underground?  And assuming I’m not wrong about that, WHY did it go underground?

If  we wait until after that first trimester to announce our pregnancy, what do we do about the pregnancies that turn into miscarriages?  How do we honor the life that was lost? How do we acknowledge the miracle of a beloved (but unknown) soul that didn’t make it onto the Earth? How do we mourn, when there is no grave to visit? No pictures to look at, no memories of the face of our child?

Even a very early miscarriage, when it is really just a blob of cells, hardly identifiable as being something that will be a person some day…even that blob holds the hope of a child, OUR child.  Please note that I am NOT getting into the discussion of when life begins.  I have VERY strong views on that which contain such phrases as “viability” and “live outside the womb unaided” and most especially “quality of life”–for the mother AND the child.  But every act of sexual intercourse without birth control contains the idea, the dice throw of possibility, of the starting point for the creation of life, which culminates with the bringing a new person into this world, planned for or not.

It is an inalienable right for every woman to decide what she tells anyone at all about her body and its condition, and pregnancy certainly falls under that right.  So does miscarriage.  Letting them know and NOT letting them know are both good, solid options.

But silence about something this life-altering may not be the BEST choice.  And I mean both states of being: “pregnant” and then “not pregnant”.  I’m not going to discuss silence about being pregnant.  That’s for another blog someday.  So let’s move on to the silence that very often surrounds miscarriage.

There are many, many reasons not to talk about a miscarriage.  Like any other tragedy, having to repeat it endlessly keeps it fresh and dreadful in the mind and heart.  And to put it bluntly, there are just some people who don’t need to butt into your business and don’t need to be told.  Those Helpful Hannahs will talk your ear off about THEIR miscarriage, and how THEY felt when all you want to do is scream your anguish and throw china dishes at the wall.  They are worse than those whose eyes tear up and they hold you close and just keep saying, “I’m so sorry.  I’m so sorry.”  Sympathy can be tolerated; clueless nattering about their pain without so much as a “I feel ya” to acknowledge yours is beyond bearing.

There’s also a sense of following the old adage of  “Least said, soonest mended.”  It’s over and done with, why keep talking about it?  No point in going on and on.  Move on with your life.  It’s not like it was “real baby” anyways…  It was just a miscarriage, for goodness’ sake.  REALLY?  I don’t care if it was an accidental pregnancy and now you don’t have to pay for an abortion.  (But you will pay in guilt and remorse for feeling relieved…and that’s not necessary, either.)  I don’t care if the woman had a history of “female problems” and was told she’d never even GET pregnant, so what did you expect anyway?  (Try to have hope that the doctors were wrong, that you can have a child of your body with your beloved…and then lose that hope in a gush of blood and pain.)  I don’t care if this was a carefully planned, carefully thought out pregnancy that ended in miscarriage through nobody’s fault, it just happens that way (and more often than one might think.)

Whatever the reason for becoming pregnant and whatever the cause for the miscarriage, you are going to have strong, sustained feelings about it.  Trying to mash them into a box in the back corner of the attic of your mind only means that they will pop out, like a Jack in the box, at the single most inopportune time and place.  Promise.  That’s how mashed feelings are.  Doesn’t matter what they are: relief, pain, sorrow, anger, whatever.  You’ve got’em and they ain’t going away.

So you lock them down and go back to “life before the pregnancy”.  Except that you WERE pregnant and now you’re not and everything has changed.  It’s like losing an arm or a leg, or suddenly being struck blind.  The world is completely different than the one before sperm and egg combined.  You can’t hide from babies in strollers, toddlers on swings, children playing tag on the grass.  You can’t pretend that you don’t see the fathers and the mothers, all with their children, living their lives together.  You cannot completely fool yourself into thinking that you’re just fine and this has not changed you in the least.

You may think to yourself, “But I DON’T want to talk about it.”  And then you get into the company of  a (any) group of women and the topic comes up.  One by one, the stories come out.  And friends you’ve had for years admit that they have a Lost Child somewhere out in the Universe, a child whose face they never saw.  And you…can either tell them or not, but you know that you are a part of this category of women forever, the Women Who Have Had a Miscarriage.

I am not advocating the wholesale blurting this out to everyone you meet.  (Although I suspect that there are women who do indeed deal with their own miscarriage by doing precisely that.)  What I’m saying is that who you tell is up to you.  It may just be to the child’s father.  Or your mother.  Or your doctor.  Doesn’t matter.  But you need to talk to someone who will listen to you without interrupting, who can offer you comfort and support, who can help you grieve for what was lost and can never be recovered, only replaced.

There is an easing of pain in this sharing of miscarriage and loss.  Trouble shared is trouble halved, so the saying goes.  I don’t know about that, but I do know that finding out that you are not alone in your sorrow, that others KNOW what you are going through…makes it possible for you to go on.  Just knowing that someone else has climbed this mountain means that it can be climbed, that you can do it as well.  Sometimes, that’s all we need to make through another day, to keep on with living until the pain subsides to a dull roar and then a faint echo that only catches us occasionally instead of constantly.

With every tragedy there is also a lesson we learn, a strength we are given or a willingness to accept what is and find a way to live with that.  Your Lost Child may guide you, through their very absence, to an aspect of your own being that you did not know you had, or had not given enough attention to its formation and growth.  It may be a chance for someone in your life to become closer to you, love growing out of like and friendship into something more, in the common bond of the grieving.  It may strengthen the relationship with your significant other; if you can weather this dreadful a storm together, clinging to each other and coming through the other side more committed to each other…then you can face anything together and win.

I would also suggest that you talk frankly, and openly, with any siblings the Lost Child might have had, in an age appropriate manner of course.  Even if it’s a bit awkward for you, even if everyone cries…this is life, it’s not always like you see on TV.  Sometimes bad stuff happens and this is how our family deals with it–together and with love (and information!).  If you don’t, you do a disservice to your children.  If they are old enough to understand it (even if it’s only that something bad happened), they are old enough to talk about it, even in the most simple terms.

My son was five years old when my grandmother died–and we were at her bedside for that last weekend of her life.  She waited until everyone had left the room on Monday morning and then departed for the other side.  So we then had to go into action, getting the body out and preparing the funeral, etc.  He went out back and was sitting on the porch when the next door neighbor came out and asked what he was doing…he told her that Grandmom had died and he was sad.  She agreed that it was something to be sad about and later on, told me what had happened.

Talk about guilt.  He felt that he couldn’t come to me, because I was up to my eyeballs in stuff and I hadn’t even realized he was outside.  So the moral to this particular little story is that even a fairly young child can understand when something momentous occurs, good or bad.  And as their parent, it is up to you to help them absorb it and express the feelings it creates.  And it’s always good to let them know that you also have feelings about it, and what those feelings are.

There is so much that can be associated with this Lost Child of yours.  The Lost Child may not have ever had a name but you will carry them in your heart for the rest of your life.  The Lost Child is a dream, the best and most perfect child one could hope for.  The Lost Child is the one that would fulfill all of your plans for offspring, would have succeeded beyond measure, would be all that you were not or that your other children could not accomplish.  The Lost Child will tease your thoughts with “What would he/she have looked like?”  “What would she/he have accomplished, would they have been like me or my husband?”  All the “what ifs”, all the unknown events and all the uncelebrated milestones belong to that Lost Child.

I offer you this bit of solace for your Lost Child: wherever the Lost Child goes, whatever your beliefs about afterlife and souls…they are never alone.  They are with all the other Lost Children, playing and singing and occasionally, whispering in your ear to remind you that once upon a time, they were YOUR Lost Child.

We each handle things in our own way, for sure. But sometimes silence is not the answer and we need to share the pain to make it easier to bear. Blessings of comfort and peace to all who have had this happen to them; my sisters, we are here to offer whatever you need, if only to listen to the story of your Lost Child.

Namaste!