Reality and Fear: Being Disabled and Separated

August 25, 2012 at 9:56 pm (Death and Dying, Disability, Living With Chronic Illness, Mental Health, Uncategorized) (, , , , , , , , , , , , )

This entry is for Winter, who suggested I write something about this.

Being separated when you’re disabled is scary. I mean, being separated is pretty damn tough on anyone, even if they know or suspect that it isn’t permanent. I don’t mean to make myself look like a special snowflake, but I’m feeling like being separated when you entered into the marriage a fairly-healthy individual, and are leaving it chronically ill, presents its own buffet of new and interesting challenges.

My spouse supported me throughout most of the marriage. I made money from time to time, but in such small amounts that there’d be no way I could ever support myself in the real world without someone to pay the bills. I never took applying for disability seriously, mostly because he seemed pretty happy and willing to provide, and he made enough money that my lack of a steady income didn’t hurt us in any way. In hindsight, this was a giant mistake, and I knew it the whole time, but between feeling ill and being terrified of bureaucracy, I made it anyway.

 And here I am, now living at a friend’s place temporarily, trying to figure out how I’m going to afford the future. There’s no question I’m entitled to spousal support/alimony, but we seem to have very different views on what that looks like. I’ve started the lengthy SSDI process, but I figure I can’t even begin to dream about that money for at least a year if not longer. I’m seriously looking at some ways to make pocket change working from home, but in such a way that doesn’t threaten my chances with SSDI.

And it’s not only the money, although sometimes it feels that way because it’s the biggest monster peering out at me. I lost the one person who walked through my whole downward spiral with me – who knew me when I was relatively healthy, and saw all the incremental steps towards chronic illness. I lost a person who cared for me, in a physical sense, in that he massaged my legs when they hurt, and stayed with me in the hospital when I was sick, and who did kind things for me when I was unable to do them for myself. He made me feel as though love could actually be unconditional, at least for a time, as he tried very hard to make me feel bad about my failing health.

However, I would be lying if I didn’t think that my illness didn’t play into how things fell out. I needed him to see reality for what it was – to accept that there was no mythical day coming when I woke up and felt completely well again. I think he chose to start a new relationship behind my back because he needed an escape from ours – a place where he was the one taken care of, rather than doing the caring. I think he needed a pair of arms that made him feel masculine and virile, and for some reason I had been failing him on that account.

On my side, I was frustrated beyond belief that he couldn’t see how much living in one room day in and day out was affecting my mental health. No amount of me begging and pleading for him to find accessible housing – or even somewhere I could make due – encouraged him enough to take any real action. As recent as a few months ago, he was trying to convince me that if I could just stick it out for one more year, then we could buy a house rather than rent and wouldn’t that be better? And yet he didn’t understand when I told him no, that wouldn’t be better. I did want to own our own home, but it was a million times more important to me to live in a house where I could move around safely and without pain. When I walked out of that house, I knew for certain that he still doesn’t understand that.

 But enough about our shit. I want to talk about the challenges of being on my own, and how life is changing, now that I am separated.

 

  • I am terrified for my financial situation. There’s all the regular expenses that one has to deal with, like rent and food and utilities; on top of all that, things like health insurance and my many prescriptions weigh heavily on my mind. For now, I am still figuring things out, and hopefully with the help of an arbiter we can come to an equitable solution.

  • I am coping with the feeling of abandonment, especially during a time where my health has been more of an issue. I’ve both been in more pain and had less mobility, and also feel closer to an answer than I have in the past. Losing the one person who’s been with me since the beginning (and who has stated that they are no longer interested in hearing about anything medical going on, even emergency level things) has been very difficult for me to swallow.

  • Not being in the place where I have grown to feel most comfortable in, which has been my shelter from the world for a very long time, is challenging. It doesn’t help that where I’m staying now (with very open-hearted hosts, mind you) is much further away from all of my regular doctors. So what was once a ten minute trip to see my GP is now an hour long trek, and that’s if traffic is in our favor.

  • I am irrationally afraid that this will start some sort of chain reaction, where my other lovers will somehow come to the realization that being in a relationship with me is more difficult because I am ill. It also makes me fear that I will meet no one else who will ever want a spousal relationship with me, seeing as I am very damaged goods.

  • Through many difficult conversations, I have come to realize that living alone is not a real option for me. Thankfully, I happen to have someone in my life who just also happens to be looking to relocate, and so I was able to come to an arrangement with them about finding somewhere together. However, there’s a little part of me, the part that feels abandoned, that hates that I can’t just strike out on my own and prove that I can survive without him; and I fear that this new arrangement will only serve to highlight how very much I can’t stand on my own two feet. Many people have theorized that the reason he betrayed my trust is because he assumed I was physically incapable of leaving him, and I’m worried that’s in fact the case.

 

That’s about all I feel comfortable sharing with the blogosphere at the moment. Obviously, I have a lot of feelings about the situation in general, and I don’t want to lose the point here. I want to find a way to plumb the depths of this experience and find a way to express how it relates to being a disabled person, a person with a chronic illness, a person who has lost the partner they thought was going to walk the whole road towards death with them.

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3 Comments

  1. Heather S said,

    I have been where you are in all these feelings (well, sans the other partners, because I only had one mortal partner). It’s been almost a year since I left, and I have received better medical care, better friends, and I have been touched at how many people have reached out to help me cope with my illness (I finally have a Dx for mine, at last). I bet you will find the same as time goes on.

    And you are NOT damaged goods, even if you are sick. There are days I have to tell myself that too.

  2. EVCelt said,

    Here and listening. Holding you in my prayers.

  3. Elizabeth said,

    Elfy love to you!

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