Thursday, May 01, 2008

A BADD Post for you

Hi Everybody ~ Welcome to Blogging Against Disabilism Day! I had a heck of time deciding what I was going to write about today, so I did what I usually do when faced with a decision I don't want to make: I procrastinated. I tidied up my piles a bit, brushed my teeth again, started to balance my checkbook. And as I was adding in today's SSDI payment, I remembered all the journal entries I had written about applying for SSDI and what it felt like, to me. I don't talk about money too much here at NTE,(except for the fact that I don't have any) but money and disability - specifically poverty and disability - are intricately linked. In the United States, and around the world, individuals with disabilities are more likely to live in poverty, and according to the World Bank, in third world countries, they make up a disproportionate segment of the "grindingly poor."

I am fortunate enough that these are not my circumstances: I am not among those living in poverty. I have benefits above and beyond what many of those with disabilities can expect in their own lives - I live in the US were I can count on some measure of support from my government - in the form of reduced cost/free medical care and the money I get from SSDI (at least for now, we'll see what November brings). But even that is not enough for me to live independently - were it not for my parents, I would have to make the choice every month between food and shelter, not to mention medications, clothing and other necessities of life. There are housing programs in my area, but they are troubled with the same burdens of all other social services programs: long waiting lists, a one-size-fits-all mentality (which almost never fit me), and lack of funding. Either way, without my parents, making it, financially, would be extremely difficult. It's a constant worry, even with them, but I have this cushion here, which allows me to afford things like Internet (yay!) to make my life more comfortable.

But the choice to apply for SSDI, and then following through the long and difficult process is something that most people don't really think about. So I've dug through my journals and come up with two entries on the subject... the first is from August of 2003, when I applied (for the 3rd time) for SSDI, and was feeling, well, you'll see how many different things I was feeling about it:

Nobody ever says "this is what it is like to be 24 and applying for Social Security." well, this is what it's like.

It's like you've failed. Like you're never going to be able to be more - do more - than you are right now. As if all the dreams and goals you have for yourself are as far out of reach as Mercury - and always will be.

It's embarrassing - to have a Master's Degree - to have earned a Master's Degree - and still be incapable of using it. To be filling out form after form after form where you have to clearly and concisely list all of your inadequacies, even the ones you avoid acknowledging to yourself. To say "Yes, I had wanted to be a teacher, responsible for the care and cultivation of young minds, hearts, souls and bodies, but right now I can't even be left alone to get to the bathroom." To be forced to admit - particularly to yourself - just how bad it really is: how many days a week you can't get out of bed, how many times a day you require help, how you can't lift over 5 pounds, how you can't tie your own shoe some days.

It's frustrating. Especially with such a load of 'controversial' diagnoses (CFIDS/FM/etc) to think that after I've bared my worst secrets and groveled for money I'd much rather be busy earning, that they might not believe me, or think that I've exaggerated, or turn me down - again. As if I had no interest in doing more than lying here, pretending to live. As if my sole goal in life was to get other people to support me - so I could live at home with my parents forever, and spend my time watching Law and Order re-runs on TV.

It's like saying "I give up." And this is the hardest one to swallow. Because I don't give up. What I'm really trying to say is "I just can't do it right now, and I need your help," but that's not what it feels like I'm saying. It feels like I did give up, and now have to beg for enough money to live.

It feels helpless, powerless... to wait until some faceless and medically ignorant bureaucrat decides whether or not I'm sick enough to deserve help. I have applied for SSDI twice already, and each time I was denied. A part of me, a not so small part, rejoiced when they said no, although I needed the money and was totally unable to work, because it meant that I wasn't sick enough - I wasn't the hopeless & forever kind of sick.

It feels futile - to know how much of life I am missing out on, and to be unable to do anything about it. What do you do after your doctor - and every other available, knowledgeable doctor - says "we just don't know what else to do... we can't really help you yet." I know that some people lead crusades to help themselves, or the ones they love. I admire them, I do, but I don't have that strength. I just don't. For me, each day is a battle - from breathing, to sleeping, even eating - every.single.thing. is a challenge right now. I honestly can not remember a pain free day - my last pain free day... I don't know when it was. So that's the only battle I'm up to fighting right now - I wish it wasn't. But it is.

It's more of just living in 'until'. Maybe even the ultimate step of living in 'until' because I've made it official: "Until I can care for myself, do for myself, earn for myself, I need this help. I need this money. To live. To be. Please Help."

It's sad.
It's scary.
It's yet another aspect of being ill that I would have rather passed on by, thank you very much.

But right now? It's also necessary - for my survival, for my sanity, for me. So I'm doing it, again, and I'll hope for the best (even if I'll be praying that by the time they decide, I won't need it anymore.)

The second is from January of 2004, when I received my first check (including the back money from when I'd first applied), and you'll see that my feelings about the money are still pretty complicated:

Got my first SSI check today: $3000! The most money I've ever had in my whole life. I've been vacillating all day between being upset and being happy. First I think, "All of this money, and I did nothing to earn it!" Then I think "Hell yes, I earned it: nine years of dealing with a life altering disease. All consuming chronic pain, dozens of doctors and diseases with no names or treatments; all the complications that nobody expected or could explain, all the symptoms that interfere with my every day, my every hope or ambition or dream." So did I earn it? I suspect I did. But it still doesn't feel good, the way I expect a paycheck would feel: Earned free and clear, through doing the job you love (or hate, as the case may be). A good day's pay for a good day's work. Plus, it feels so final, as if there is little hope for change or improvement.

I just don't know what or how to feel. It's very confusing.

I do need the money: even though I'm living at home, off my parents, basically, I need to be able to contribute something. And still, I'm too sick to take this money and actually do anything with it. Even if I have earned it, I can't just spend it: I'm too sick to shop, even. *This is obviously before I got my laptop and a debit card.* This day is just too conflicting... I don't know what to think.

What are my thoughts today, four years later and unfortunately still on SSDI? Still pretty conflicted.

In some ways, it's a lot easier now than it was then: I've since done a lot of thinking about the responsibilities of the government towards it's people and the need for social services, etc. I don't have a lot of questions about whether or not I 'deserve' the money - I pretty much figure I don't 'deserve' my illness either, but if I'm stuck with that, I should ask for the help I need if it's available. I've gotten to the point where I don't always feel as helpless/powerless with my situation, because I have doctors who work with me and friends who listen when I've feeling overwhelmed.

But I'm still sad and upset that I'm not doing what I want to be doing with my life, that it's just not possible to be working (or having a family or traveling or any of the millions of other things I want to do that require more than I have to give). That's not something that goes away. I don't think it should go away, personally, because that would be like giving up: I've adjusted a lot of my dreams to fit me for now: watching the children in my family, helping to care for them as they grow or writing for websites and on this blog because it's something I can do that keeps me connected to my dreams as well as the rest of the world. I may still be living in 'until...', but I've made 'until...' fit me as best as I can.

Anyways, that seems like a very long post, not just about money, but about all of the feelings that come along with asking your government for financial help. I don't know what other peoples' experiences are, but this is is how it felt for me, to be 24 years old and to realize I wasn't going to make it without some financial help. I was lucky enough that it was available to me, I realize now, and the past few years would've been a lot tougher without it. So for today, I'll be grateful, even if I'd still rather be working. I'd still rather be earning my money at a job I love, feeling like I was doing more than making it through the day.

And now I'd like to direct you to the hub of BADD, Diary of A Goldfish, where there's a zillion and one more posts about a zillion and one more topics, all related, in some way to disability. Even if you can't get through them all today (yeah... I tried that last year... it did not work out), bookmark the page and get to them as you can: I know I will be.

Thanks for reading! Happy May Day all!


Angeline B. Adams said...

Yeah... I know all about the mixed emotions. Especially when you have to list everything you can't do... it's very hard seeing it all written out; very hard not to feel defined and circumscribed by it in a way that goes beyond practical day-to-day coping; on a psychological or spiritual level.

I'm really glad people are using BADD to talk about this kind of thing and bring it to the attention of others.

Wheelchair Dancer said...

Thank you for this. We too rarely hear about the process, the fear, anxiety, and feeling that come with it. Too often, in the mainstream world, I encounter the idea that it's a slam dunk that is exploited by the undeserving. Oh so not true.


seahorse said...

I recognise a lot of your feelings in this post. I've had money from the UK's hardship fund for essential items for myself and my son. I told him the Government provided his bed, carpet, curtains etc.

It's hard to be so dependent and to accept I cannot work. But I find it harder to be grateful when the politicians running the show are so screwed up in their approach to disability.

Ruth said...

This post goes a long way toward dispelling myths out there about SSDI, the whys, wherefores and hows of it - applying, waiting, applying again and the cognitive dissonance involved -you put it all so well.

Sally said...

You are not alone, in your experience, your feelings about applying for assistance, about receiving it, about being dependent, not being able to be the person you are.
My 'bump' (well she was a bump when I was pregant with her !) is almost 30, and has had what you have for almost 20 years, off and on, now 'on' all the time. And a Masters. And your description of applying for financial support and having to describe on the application how difficult it is and not wanting to be needing it then getting the back pay (yeah ! all that money) ... then finding a way to spend it ... getting a debit card and internet access .... yes yes yes. She, and many others, have gone through that experience, but she felt alone and isolated in that experience at that time.
So, there are many others, you are not alone ... gradually things will change. Blogging will make a difference.

Anonymous said...

What a thought-provoking post. Thank you for sharing this. It brought back my own mixed feelings about having SSI--being grateful for it because I've not found work, but at the same time feeling that I've not truly earned it, even though I do have a disability.

David said...

Thanks for this. Great post!

Laurie said...

Wonderful post--so honest and insightful, as always. My father always told me "Illness changes everything", especially when I stressed about financial help, and he's right. Of course it's such a conflicted, complicated issue, but you said it best yourself--you didn't ask to be sick, or for things to be this way, and you've earned this, even if you don't always want it.

Anonymous said...

Thank you, thank you, thank you.

And geez, I can't stand that it took from August to January for you to get your first check. What if you *hadn't* had your parents? Where would you have spent those months?

We really have to do a lot better for each other in this country, including ditching the Self-Sufficiency Uber Alles doctrine so many of us seem inculcated with so early, and so thoroughly.

Anonymous said...

Oh, and BTW, your blog is pretty. :)

Valerie said...

This was a very interesting blog posting. I am amazed at the process you went through. My dad became disabled from an early warning stroke at 57. It took 2 years to get his disability check. It was a painful process for him.

Thank you for a look into your deep thoughts.

Anonymous said...

I just found your blog today and, based on this entry, I've found a jewel. I love how you openly share your thoughts on the reality of having a disability. And I agree- it sucks to have earned a Master's Degree yet not be able to use it.

I will definitely be back :)u

Never That Easy said...

Thank you all so much for stopping by - I'm so impressed by this year's BADD posts, and can hardly believe this many people have made it over here already. (I'm still about 1/4 of the way through: and I read fast!)

I'm glad that this resonates with so many of you: it's so much easier to accept what you're going through when you know there are others who 'get' it.

Kay Olson said...

This is a wonderful post, and Ruth is right about the cognitive dissonance of the application process. For myself, I found the dissonance included the fact I was pretty darn healthy, relatively speaking, just using a wheelchair full time and not getting job offers despite all the interviews. All those questions about what you can and cannot do were so mindboggling to me because while I did have to face my own limits to answer them, they also really expose how the ideas of work, employment and ability are framed to leave certain people out.