Richard after the brain-drain procedure, February 2011
A little over a year ago, Richard and I were discussing disability, specifically, whether we should file for Social Security Disability Insurance on his behalf.
He had by then weathered two brain surgeries, plus one procedure to drain a near-fatal accumulation of brain fluid. His recovery each time astonished his docs; his brightness—both in mind and spirit—seemed barely diminished.
So when his oncologist suggested applying for the disability pension, Richard said essentially, “No thanks.”
She looked directly at me and said, “Think about it. It could give you some breathing room and help you manage more easily.”
I didn’t like even hearing the word in the context of Richard. I looked up the definition:
Disability. n. A physical or mental condition that limits a person’s movements, senses, or activities.
It was hard to imagine my love as “disabled” when he sketched out an idea for a new sculpture, or commented incisively on a piece of my writing. But I had to admit that his ability to accomplish the more practical aspects of life was… impaired. Things once simple took him a long time; he was easily distracted.
In the end, after talking about the labels, he decided it wouldn’t hurt his sense of self. We applied for the pension, and his doc was right: that small monthly check freed me to do a better job of helping him live well with brain cancer, and die well too, when it came to that.
A silly moment, April 2011
I’ve had those discussions in my mind recently because living without him has forced me up against something I have successfully avoided until now: I’m disabled too.
Not in any way that might be obvious to others. But it’s become painfully clear to me now that I don’t have Richard to help out.
The most obvious symptom: my energy runs out long before the end of the day, and if I push myself, I pay with fevers, joints that feel like they’ve been pounded with a ball-peen hammer, balance wobbly enough that I need a cane, and brain fogs so intense that words become strangers and I cannot think my way out of a paper bag, much less a crisis.
I’ve been accommodating my own particular… disabilities for so long that they’re normal to me. It’s habit, for instance, to save energy: I sit down instead of stand when I can do it without drawing attention to myself; write from bed at first and then move to the couch, where I can sit sideways with my feet up; take baths rather than showers (it’s that horizontal versus vertical thing again, a crucial difference for my daily energy budget); I carefully schedule my outings and public appearances at the times when my energy is at its best, and as a result, so am I….
My limits come from having either Mixed Connective Tissue Disease or Lupus, depending on how the tests are interpreted. The label doesn’t matter to me—neither is understood well enough to know what causes it or might cure it.
The sunset from my couch...
I have managed quite well by adjusting my life to accommodate the symptoms, which means being very careful to live within the limits of my energy—once I overtax myself, my body’s systems go haywire and I am sick and miserable, wobbly and unable to think straight until I have time to recover.
I’d been considering my limits when a very knowledgeable and helpful representative of the Social Security Administration asked me point-blank if I was disabled, and then quickly said, “Let me explain why I’m asking.”
If I fit their definition, I am eligible for a monthly disability insurance payment (smaller than Richard’s because I’ve earned less) and, two years after qualifying, I’d also qualify for Medicare, compelling in itself, as anyone who is trying to afford health insurance will understand.
Both mixed connective tissue disease and Lupus are listed on the Social Security Administration’s list of qualifying conditions. My family doc is willing to write a letter in support of my application.
Pallid evening primroses out the bedroom door at dawn
Still, I haven’t decided to apply. Like Richard, I’m proud and I imagine myself self-sufficient. (None of us really are, but it’s a seductive fiction, especially for we westerners.)
Applying requires a huge investment of time and energy, and I have more than enough to handle right now. So much more than enough that I wake exhausted, having spent the night trying to figure out how I’ll keep all of those balls in the air. (I’m no juggler—that was Richard’s talent.)
Fortunately, it’s not a decision I have to make immediately, as his palliative care psychologist pointed out when I talked with her about it. I’ve got two years from the date of his death to apply, and in that time I can gather the information as I have energy, a bit here and a bit there.
First I have to decide if I can live with the label. Richard didn’t let it define him, and that gives me courage. I’ll give it time and see how I feel.
You will find the right answer. We always do when we are open to what is put before us.
I too face this issue – your lovely well-thought out words helped me face and understand the dilemmas and distractions we face when dealing with that other “d” word – disability. I like to say I am not DISabled but DIFFERENTLY-abled!
The changes you have faced, and will continue to face don’t define you, you are so rich in talent and and heart!
Thank you for sharing your path(s) with your readers and fans. WE are richer because we know you!
Laura, I’ve used the word differently-abled too, but it doesn’t avoid what bothers me about “disabled.” I think I just don’t like the whole idea about identifying ourselves by our abilities that way. I just want to be me…. I hope you find the tools you need to do the work that’s in you. I think the most important part of living a good life is to find what we do best, and do it as well as we can. it’s satisfying to bring our gifts to the world. Blessings on your journey, wherever it takes you.
This is an interesting point. I find myself thinking of people who expect other people’s houses to be pristine. The reality is that I don’t think I’d care to know someone who didn’t have a junk drawer, and understanding and accepting our own “junk drawers”–the areas where, for one reason or another, we face inordinate challenges–seems like a wise, kind, and healthy thing to do. I once had a short-lived, strange relationship with a man who left me with a wonderful quote. I was bemoaning a “junk drawer” in my life (I hadn’t set the color screens up right on a print job. It seemed like a big deal at the time). “You’re extraordinary,” he said. “You’re not perfect.” I think that sums up the nub of the issue for me–too often I get caught up in expecting perfection, and in seeking it I miss the extraordinary. You are an extraordinary woman, Susan. The fact that managing some of your “junk drawers” requires a little extra help from others in no way changes that. You are not perfect. You don’t have to be.
You manage your mixed connective-tissue/lupus so well (decades of practice do, eventually, account for something) I often forget about it, or register its existing somewhere in the background. Even so, I am aware and do remember. Best I’ve been able, I’ve been watching from sorta-afar. The past couple and a half of years would undo the mightiest of sturdy folks.
Sense of self, or sense of dignity? (And is this, still, the same thing?) Other than a monthly check/stipend, what else is involved, included, should you got the “disabled” route? (By the way, I’m confused regarding the two-year deadline—seems you should be able to apply whenever.)
Caramba, sounds like your Worrying Hour is taking more than a single hour. Grrr…
I still absolutely love the mirror portrait!
Eduardo, The two years are the amount of time I have as Richard’s widow, to tap into my benefits from his account. Since he earned considerably more than I do, that would give me a larger insurance benefit. (Still not a big amount, but like the rain last night, ever bit helps.) I think dignity and sense of self are the same for most of us, but what pierces one or the other is an individual thing. You know about that….
Susan, It is not a label it is a right. You have paid into it over the years. My Father was that way about unemployment. Too proud to sign up for it. So we as a family suffered by going with out food and needed medicines. At times we were just barely living off the little bit of money I made at my after school job. I don’t know who but some one finally set him straight and told him he had paid into it and was entitled to it. Take it, It is your right, the label is only in your mind. I think you know that. You are a strong, proud woman, but sometimes I think you let proud get in the way.
Caringly (is that a word?)
Bill Hudson
Bill, Thank you for that poignant personal story. You are quite right about the disability insurance being a fund you pay into and thus are entitled to use when you need it. I am indeed struggling with my pride, but at least it’s only me involved and not a family as in yours when you were growing up. I’m sorry that your dad didn’t see the reason to take unemployment benefits until after you had to step in and help with your after-school earnings. That’s just not right, and it must have been so hard on you and your siblings. I’m “sitting with” my pride and my reluctance to spend the energy and thinking about what I find. As for “caringly,” whether or not it’s an official word, it gets across the meaning, and I appreciate that!
Dear Susan, Laura/ReaderWoman said it best, “. . .you are so rich in talent and and heart!
Thank you for sharing your path(s) with your readers and fans. WE are richer because we know you!” I doubt there are very many people who so willingly and so capably share their lives with others as you do. I am proud of you and feel blessed to “know” you. Labels can be difficult to live with and Laura used the term “differently labeled”. I wonder why we have to be labeled at all but that is what it is and it isn’t going to change anytime soon. I do think that having put your cards on the table as you did in this post will help you sort through this decision. No matter what the label you are still the same person who writes and shares with so much love. Accepting that “label” and the help it will provide might mean that you will have more energy for the things that truly matter to you. Hugs, Lindy
Lindy, You are right that having laid my cards on the table in this post, as it were, I will be better able to make my decision. I write to think, and I hope that when I share that writing publicly as in this blog, and in my books, essays, talks and such, I’m using my internal processes to illuminate parts of the journey we all go through, in ways that are thought-provoking or inspiring or simply help us all see the world in new ways. If I’m successful, it’s worth the inner torment and the effort to put it on the “page,” virtual or otherwise. Thank you for thinking through it with me, and for your support. Hugs back.
Sweet Susan, Sixteen years ago, unable to function at all after the severe brain inflammation from the Lyme, I applied for and immediately received disability. Honestly, I never thought about the label. I thought about needing to feed myself. Living on $600, now $800 a month (!) is almost a joke, but without it my lifetime savings would be gone by now. So here you have another person who didn’t let the label get in her way. Reality is reality. BTW, I was wondering how your health could possibly be holding up under the unimaginable stressors of recent times. Please, please, please take care of yourself as you walk your Woman Alone path. We don’t want disability to become a capitalized word in your vocabulary! Much love from FL.
Bobbe, I am glad to think you could and did get disability insurance benefits when your Lyme disease reached that crisis point. The hardest part for me of doing the application is simply explaining what I do every day to accommodate to my particular and peculiar health. I don’t even like the label “disease”–what I live with is just me, who I am at the level of physical and mental capabilities. I’ve been this way all my life, I guess, so it seems natural to me. (I guess that’s another post!) Thanks for the example and the encouragement. It’s raining here this morning in Salida, moisture we desperately need. Perhaps that’s a sign too….
Doris McG, Thank you. As we Quakers say, “Way will open.” There’s no guarantee it’ll be the way one was imagining, but being open to what’s available is part of living a mindful, thoughtful life. You’ve got that right!
I rarely am so firm in a suggestion – please apply. You have earned it and it is not admitting defeat. The system is there for people in your situation. Much like the advice I give to employees who don’t want to use one of the many assistance programs at work – we want you to use it because you will be a healthier and more productive employee. Please – you are not taking advantage of the system – you are using the system as it was designed.
Linda, Thank you for your thoughtful–and firm!–suggestion. I hadn’t thought of disability insurance as a way to make me healthier and more productive, but I guess that’s just the point, isn’t it? Wise advice!
I’m absolutely going to apply–actually, I’ve already tracked down the online paperwork. As you point out, I tend to fall right between the gaps, and with a condition like this even insurance companies who will agree to insure me charge so much it’s not a realistic option. I’ve applied in the past (they lost my paper work twice, the third time they let it “age out” on somebody’s desk so I had to go to the end of the waiting list and start over, and each time they lost the paperwork they demanded fresh and updated tax records(within 30 days). I finally gave up. Still, never say never…
Dearest Susan, Everything has been said eloquently from people who care about you. I hesitate to add to it. My thought is simple — if you decide to do it–tackle the paperwork, swallow your pride, rant and rave into your pillow, get accepted, you’ll be past the worst of it. In a couple of years, the angst will be history, and you’ll have the extra $ in your bank account each month. You’ll be glad you did it and it will no longer be an issue. Blessings!
Maria, It’s the tackling the virtual paperwork part that is the hardest for me. I have only so much researching and writing energy, and now that I’m head-down in a new memoir, it’s hard to think of taking weeks of that time to apply. (And then to wait three to five months to find out if I am accepted.) That’s the part that’s daunting. But I’m thinking about it.
Your post raises a lot of questions for me. Like you, I’m a westerner who has grown up with the idea that if I can’t saddle my own horse, by golly it won’t get saddled–and that to someone acknowledge that one needs help is to acknowledge weakness. I faced something similar when my son was born, and I was starting a new business and trying to keep our little family afloat. It took me a very long time to apply for WIC (even though we more than qualified)–and in fact it took another rugged individualist pointing out to me that my pride was affecting the quality of my son’s diet as well as my own. I finally applied, but even then it wasn’t easy. using WIC vouchers meant facing clerks who often treat WIC and Welfare voucher users like less than humans. I found that they wouldn’t look at me. They would rush through my orders, refuse to answer questions, and sigh heavily if I got something wrong, or pressed them for an answer.
For many of us, there is a great deal of shame attached to the idea that we might need a bit of help–as well as a bit of self-righteousness among those who see public assistance, WIC, and disability as synonyms for malingering. None of which changed the fact that I needed WIC. And, based on your post, you need disability. In order to keep living your life, you need to be able to use your energy very, very carefully.
I hesitate to compare your case to mine (that can be a slippery slope) but it seems to me that there’s a vital difference between applying for Welfare, WIC, and Disability in order to continue to meet as many of one’s responsibilities as possible, and applying for them in order to avoid one’s responsibilities. This, of course, means that we need to broaden our definition of our “responsibilities” to include more than just financially paddling our own canoe.
It also means acknowledging that none of us–NONE of us–have gotten where we are without a little well-timed help. We all have those times in our lives when we are simply not up to life’s multiple demands. I would imagine that right now, in the wake of Richard’s passing, energy is at even more of a premium than usual. Dealing with loss and grief saps energy under the best of circumstances.
What about if you were to change your thought parameters in two ways. First: Rule out your worries about what others might think about your self-sufficiency or lack of it. This is a matter for you and the state in which you live. You point out that they consider you condition a legitimate condition for disability. Now what about you? Do you feel equal to your days, or do you find yourself leaving some things undone (or pushing yourself beyond wisdom)? If disability would help you to live your life more fully, effectively, and serenely, maybe this is one of those times it’s there for.
The second change I’d suggest is that you look at it not necessarily as a permanent shift to disability, but as a temporary measure, until you’ve weathered this energy-draining period of your life and have reached a place where maintaining a healthy, positive equilibrium is less energy-intensive.
Just a couple thoughts–not that you need them! You’ve got a good head on your shoulders, girlie–I’m sure you’ll reach the conclusion that fits you best!
Bodie P
Bodie, (I do love that nome de plume, BTW!) That’s just it, that in the bone belief that you’ve got to saddle your own horse or it won’t get saddled. I understand completely why it took you so long to apply for WIC, and I’m glad you had a wise friend to remind you of what was important. I think it’s much easier to be labeled disabled than to be on welfare in our culture, so good for you for doing what you needed to for the boy. That’s why you’re such a great mom! As for me, I know I’m disabled, and I know I’ve been pushing it for a long time. I can see it in my health. My mother died of her RA because she refused to admit her limits, and the disease just ate her bones and her body. You’d think that would make it easier for me, wouldn’t you? But it’s never that logical or that easy…. Thanks for the thoughts, and the nudge!
I echo the love and wisdom from all your commentors, and as one said (or something like that), you probably don’t need more, yet it’s so true that you experience life deeply with heart, and write it so meaningfully that you touch us all. But I’d like to take this tack: I get the ‘I’ve got to hold my own’ – was born and raised with it. But comes a time life says: yo baby, you are not Infinite Capability; you need help (and you’ll even grow from the process of receiving it – but life doesn’t tell you that part till later on.) Years back, I pushed against that as hard as possible and one major time I found I had to say ‘uncle’. Wow, what a difference it made to accept – to take in – loving help. Though I’m in a caring profession and am an empath, it increased my compassion and empathy. It really made me a more whole person – that is priceless.
Where this is going: I get hating that paperwork, specially when what is integrated into your being, body and lifestyle has to be dissected, described and detailed. This is where I recommend allowing some one you’re comfortable with to help make this hold the energy and process the paperwork. Sometimes it helps to just let someone else pick our thoughts and fill in the form. And from a good lawyer friend in WA state I know that there are often multiple rejections as a matter of form; how tiresome! But the squeaky wheel gets oiled and continuing to re-apply if rejected gets rewarded. And maybe you know this already.
All said with the best intentions and meant very lovingly, even if I am becoming a yenta.
You’re so right, Mary about how much we learn, and how our own hearts open, when we accept loving, open-hearted help. I’ve experienced that over and over again in the journey with Richard’s brain cancer (and the embedded journey with my mom in her last months). Learning to ask for and accept help has been a wonderful gift for me, though I can’t say I’m really good at it yet. As for the application process, I guess I see it as a writing project that I’m uniquely qualified to do. Since I accommodate my particular health without much involvement with western medicine (no drugs, no hospitalizations, no tests, no procedures), that means I’m the one who knows what I do and how it limits me. So when I decide to work on the application, it will be in that spirit–here’s a chance to tell my story. I think SS Disability Insurance is a different process than the better known SSI pension, for which I do not qualify, and it’s less likely to be denied and then appealed. WIth Richard’s case, arguably much clearer and more urgent than mine, the SS office called me with two rather minor questions, and 10 days later they had accepted the claim. That’s got to be some kind of record, but it was in part, the SS person said, the great job I did in filling out the forms. So if and when I decide to tackle it myself, I’ll have to be as clear as I was with his forms…. I think I’ll probably do it, but I also think I’ll finish the new memoir first, so it’ll be a while. I like the idea of you and an Italian yenta!
Living with the label will only be an issue if you let the label define you, Susan–and I know you won’t! It’s only a temporarily disagreeable task you have to complete to free yourself from other disagreeable tasks down the road. And we’re all dis-abled in one way or another, come to that. (I can stand and walk comfortably for just about 22 minutes: after that, I’m ready to sit down. That’s a “disability” in some people’s definition.) I know you’ll do what you have to do, when it’s time to do it.
Susan A, Thank you for saying that so clearly: “living with the label will only be an issue if you let the label define you… and I know you won’t!” That’s the heart of it for me. (Well, and the time and creative effort the filing will require, which is substantial in itself.) We are all disabled in some way or another, and it’s astonishing to me that our culture isn’t more accepting of that. Perhaps we can work on changing that!
By the time I was just a single year old, I had the first of a years-long series of middle ear infections. Before I turned ten, at least half of my hearing was gone: 80% loss in one ear; “just” 20% in the other.
So, I do have a disability; however, because it’s how I’ve been all my life, and I’ve made all matter of adjustments throughout my life because of it, terms like “disabled” and “handicapped” don’t neatly slip into place. For either, or any other such label, to be use regarding my hearing seems (at least to me) to smack of at least a little lying by omission.
Of course, pride and good ol’ boy pull-yourself-up-by-your-bootstraps are also in the mix; but things are roiled enough already without them.
What I’m wanting to say is I understand full-well the hesitancy of referring to a condition you’ve lived your whole life with as, “disabling.”
I read these comments, and I am reminded of my dad, whose back was virtually destroyed by a logging accident. I can remember him doing physical therapy exercises at home on the bed because there wasn’t money to go to the hospital for them, and crying from the pain. The doctors told him he would never work again–that he was permanently disabled. And he lived in near constant pain after that–but he went on to become a well driller, then a ranch foreman, and then, when his back disintegrated even further, to build his own custom harvesting business. For him, the “disabled” label didn’t slip neatly into place, either. When one occupation became impossible, he found something else he could do. I think there’s some merit to that, but I also think that it’s one thing to talk about a specific physical condition around which one might work, and a more generalized condition that strikes at the heart of one’s ability.
While I don’t consider myself disabled, I can use a couple of my physical conditions to illustrate. I have a neck injury. It seems to be permanent (though it’s now much, much better after some NLP sessions). I also have fought an ongoing battle with depression since I was about five or so. Even though the neck injury is a concrete thing, an injury to which I can point and identify when, where, and how it happened, it is something I can work around. I can be smarter in how I do my job, and if the day comes when I’m not able to sit up at the computer for long enough stretches to do it I’ll find another way, or find another job. The depression, on the other hand, can be far more debilitating. It can make it impossible to get out of bed. It can make it impossible to focus enough to work. It can make it impossible to see beyond the next minute. Even though it’s a far less dramatic “injury,” and certainly less calculable (and yes, I do take medication) if I were to go on disability I think it would be for a condition like that, that strikes directly at my ability to function, rather than for a condition like my neck, which simply limits or prevents my ability to function in certain ways.
Eduardo, I think just as we’re each differently-abled, we also each find the accommodations that work for us. Those accommodations may change over time as our other needs change, and sometimes we may even re-think completely our idea of ourselves and what we can do. You’ve accommodated in some pretty profound ways, and your hearing loss has also shaped who you are in some pretty profound ways. Those may be things you re-think someday, and you may also want to write about them someday as well.
Last year I applied for disability de muy mala gana. I absolutely hated affirming over and over every one of my symptoms that I could remember instead of my usual creative denial about them, but there’s no trust fund in this house hold and I really really couldn’t work. I go it rather quickly.
Now I have Medicare which takes some out and I have Medigap which takes twice as much money as my husband’s Medigap (he’s merely old whereas I am disabled) and I have bought the mandatory drug plan. Which is what? I can hardly tolerate most of the antibiotics for my Lyme and the antibiotics only lead to more antibiotics and most of them are worse than the disease. The Medigap seems like a waste of money at this point but if something truly more terrible happens I can get hospitalized economically…. But I somehow had the delusion that all this insurance was the equivalent of socialized medicine but it’s not. There are for one thing three tiers of drug plan insurance.
The application was bad for my mental health and now my outrage is bad for my mental health although I try to remember Buddhist principles and it is only Avidya- ignorance.
Buckminster Fuller said something like, ” I needed to decide at the outset whether I planned to make money or make sense. I find the two are mutually exclusive. ” There’s no making sense where capitalism drives the plot in health care- or anything else.
This conversation has just acquired new and frightening overtones for me. Like many of us these days, I am uninsured because I simply can’t afford the premiums–a number of “pre-existing conditions” have made what insurance options I have simply unaffordable. Nevertheless, my health has been deteriorating, and I finally went to the doctor yesterday. I learned that I have a syndrome related to sleep apnea (as I understand it it’s an escalation of the condition, where one’s body forgets to breathe during the day, as well as at night). The consequences are far-reaching–among other things one’s water retention rate and obesity skyrocket, and if my doc’s right, lifestyle and exercise changes have absolutely no effect. Furthermore, the body’s lack of oxygen means that movement becomes increasingly painful, and then there’s the loss of mental acuity related to oxygen deprivation. My doctor says that I’ve quite likely had sleep apnea since I was a little kid. It hasn’t been treated because, as she put it, “When patients say they’re tired, can’t catch their breath and it hurts to move the doctor thinks, “Fat kid,” and tells the mom to get the kid to bed earlier and make them exercise more and put them on a diet. None of which have ANY effect.
So yesterday I learned that in my case the condition has advanced to the point where if I don’t do something fast, my kid will find me dead some morning. And I still have no health insurance. Treatment involves both ongoing “machine” stuff at night and surgery (to help mitigate some of the weight gain and water retention).
And in the midst of all this I must still work, because if I don’t we’ll lose the house, not to mention the grocery money. And the irony of all this is that it’s been virtually a lifelong condition–and not even a particularly rare one–that because of cultural and social biases has gone undiagnosed.
Sorry, I just had to rant a bit. The whole “you could be better if you just wanted to be” is so incredibly destructive to so many of us.
Oh, Bodie, I am so sorry to hear the news from your doc! I am glad you’ve got a doc who could look at you and figure out that you’ve got this sleep syndrome, but it surely isn’t easy news to hear. Doesn’t Oregon have some kind of health insurance or care plan for people who can’t afford self-insurance? (Now that I ask that though, I bet you make too much money to qualify. But not enough to insure yourself. Sigh.) It sounds like your doc is suggesting a C-Pap at night, as well as the surgery for the throat flap? I hope you can find a way to afford the C-Pap, which might just make a huge difference by itself, if what I’ve heard from friends who have sleep apnea holds true for you.
You are absolutely right about the kinds of prejudices that lead to these kinds of things being dismissed. I was tired as a kid and always blue with cold, and my lovely pediatrician just thought I needed to gain weight. Actually, it was probably my Raynaud’s Syndrome interacting with the other connective tissue diseases. If we’d known then what I know now, I might be healthier today. Or not. It’s hard to know. But I do know that she looked at me and thought: skinny kid, needs to eat more, just as your doc thought, fat kid, needs to exercise more and get better sleep. Both very wrong in part because of cultural biases. I’m sorry.
Anna, I am sorry that applying for disability was so hard on your mental healthy. It’s not easy, the sorting through which path is best. But we do what we can with what resources we have, and it sounds like, disillusionment with the medicare gap insurance aside, your choice to file for disability insurance was a good one. It’s not a panacea, but it can help. And that’s better than nothing. It’s a good thing you’ve got summer coming on and wildflowers and sun. Enjoy that and let the rest go….
Is your pride and stubbornness a disability
?
If your best friend told you she was not applying for help that was her right and would make her life easier, what would you counsel her to do?
But the paperwork – how about a page a day or similar small bits at a time?
I echo the “caringly” above.
ET, Of course my pride is a “disability”! But the form isn’t as simple as a page at a time: it’s a matter of gathering decades-old medical records, and writing a great deal of “interpretation” and remembering as best I can what I was like “before” and how my life has changed. It’s a big investment of time and emotional energy with no guarantee that my somewhat unusual case will be accepted. So I’ll have to see how I feel. Thanks for the encouragement.
My husband went on disability in 1989 and yes, the paperwork was a pain and I was the one who did it since he was recovering from a stroke that affected speech and language. He had group insurance with his job so although the Medicare that “arrived” 2 years later was welcomed, it was not a necessity. His disability application was never questioned and it was approved right away. Technically he was disabled due to his heart disease and perhaps the residual effects of his stroke, but he was already somewhat disabled (although he never let it stop him from what he wanted to do). Years before he experienced a severe electrical burn and only had partial use of his right hand (he was originally right-handed), severe neuropathy, and severe back and neck problems for which he had had several surgeries.
You’ve already received lots of good advice, so i won’t add to that except to say that being able to receive the disability payments with the hope of going on Medicare in two years would greatly reduce your overall stress. That stress (decreased income, no health insurance) would certainly be reduced. If you do choose not to apply for disability or if you are turned down, you are still eligible for a widow’s pension at age 60, which would be based on Richard’s income. However going that route would result in your not being eligible for Medicare until age 65.
It’s tough making all those decisions and changes after one’s spouse dies. I was still working full time when my husband died but I had a 16 year old at the time and that first year was especially tough in lots of ways.
Joyce, Like you, I did Richard’s application for SSDI, and that’s part of why I’m hesitant to invest the time and energy. His case was clear (as was your husband’s), mine requires interpretation. I love my work (writing) even if it doesn’t earn me much of an income right now. I’m reluctant to shift my creative energy from doing what I love and what feels right to me, to writing up an SSDI application. I expect I’ll do it eventually, but right now I am not sure. A widow’s pension when I’m sixty is only four years and three months away, but then, as you say, there’s that question of Medicare. It’s not an easy decision!
susan, i haven’t read the comments, but i will tell you this: i once qualified for assistance from the govt to insulate and re-do windows on my old house. i was pre-selected, but didn’t go through with it (felt too proud). I applied again two years later, but by then i made less than $600 too much. another year or two and i had to have that work done. 22K that i didn’t have, so i had my woods logged, and remortgaged and added my meager savings. my pride bankrupted me, not actually, but practically. those supports are FOR people like us who strive to give back to our culture.
Velma, Your story of having to log your woods, reportage, and then still use up your meager savings to replace the old windows and insulate your house is a telling one. Sometimes pride really isn’t worth the price, but we don’t usually learn that until later. If we learn it, I guess it’s the lesson we needed to get….
Susan dear, as I expect you already know, the wording of the Americans with Disabilities Act was carefully crafted so that the emphasis is on the individual — who just happens to be one with a disability — not on the disability itself. All in an attempt to shift what some consider to be a stigma attached to the word, disability. I like how people without disabilities (or at least perceived not to have disabilities because they are not visible ones) are described sometimes as TABs –Temporarily Abled Bodies. Because, if we live long enough, we are probably all going to have disabilities. So, if it ever feels right for you, I encourage you to accept with pride any financial help for which you are eligible. You give so much to so many people, Susan. In my opinion you’ve already paid back or paid forward or paid with a jig many times over what might be offered to you!
Elena! How lovely to hear your voice on this blog. As always, your words are wise and full of love, and so on target. Thank you. I am still considering what to do, but I’m beginning to think perhaps in a couple of months I’ll have the time and energy necessary to do the SSDI application. Fo course, there’s absolutely no guarantee that my somewhat unusual case would be approved. … Much love to you!