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!