Thursday, May 20, 2010

My MS Story Chapter 37 – Long Term Disability

social security benefits
(Photo credit: SalFalko)
“Hard work never killed anybody, but why take a chance?”
  - Edgar Bergen

May 23rd, 2010 will be my one year anniversary.

I met with my doctor in December of 2008. “Don't you think you should consider going on disability?” he asked, not for the first time.

“No. Not yet. I’m still doing fine,” I responded, not for the first time.

But I wasn’t doing fine. My MS was growing steadily worse. I had fought the good fight to remain employed, but maybe my working days were coming to an end. In fact, maybe I was continuing to work for the wrong reasons.

Our personal lives (who we are) are so wrapped up in our careers (what we do) that sometimes it is difficult to separate our personal identity from our professional one. If I was no longer a manager in an engineering firm, then who would I be? MS had already stolen so much; could I let it steal this part of me too? Would a disability retirement benefit me because I could focus on my health, or would staying home from work be the beginning of the end? Would I be giving up on more than just my career?

It came down to what was in the best interests of my physical health. My psyche would just have to adjust. I couldn't let pride get in the way of doing the right thing.

It was time. I remember calling Kim from the road to tell her the moment I had reached this decision. Of course, she and I had discussed it many times, and of course, she was supportive.

When making life decisions like this I am very deliberate- considering all the facts, the advantages, and the disadvantages. But once I make a decision, I proceed quickly, and I don’t look back. In fact, I can’t think of any major decisions that I’ve spent significant time second guessing (although I’ve made my share of mistakes, sort of like the one on the left).

Once the choice was made, I needed to inform certain people. I worried about how this news would be received. As it turned out, my fears were unwarranted.  My close friends and family were, to a person, supportive. The most common sentiment was ‘this is long overdue’. No second-guessing. No judgment. No emotional pity.

My employer was also supportive. I was clear with them that I had researched this course of action, and I was ready to proceed. My boss and the human resources department were understanding and helpful.

I began to fill out the mounds of paperwork for the long term disability insurance benefit from my employer and for Social Security disability. I had heard many horror stories about the disability application process -- how most people are denied on their first application and need to go through an appeals process. But the first official step in this entire course of action, the step that set all the wheels in motion, was to one day, all of a sudden, just stop working. There is no other way to begin the process.

When you are hit by a bus, you know that you can’t go to work the next day. When you have a massive heart attack, you don’t wonder if you should be at work instead of in the ICU. But when you have a progressive disease, it’s unclear which day is the day that you can no longer work. Is it next month, next year? Was it last year? Is it today?

I decided that the day I could no longer work was about two weeks out. I spent that time with my employer to tie up loose ends. I still had trouble shaking the idea that I was somehow giving up. Intellectually, I knew this was the right thing to do. Medically, my doctor assured me that this was the right thing to do. Legally, I was in good shape.

imagesCAJS6E6Y Fortunately, when making decisions I give a lot of credence to my intellectual side. I had mixed feelings about this move, but I proceeded anyway. On my last day at the office my coworkers threw a party for me in the form of a roast. Kim had provided them with some incriminating material and photos. We all laughed and laughed. What a memorable sendoff it was.

Since I came home on May 23, 2009, I have not worked another day, and likely never will.

In the weeks after I stopped working there was good news and bad news. The good news was that my Social Security and private insurance applications were quickly approved, with little additional scrutiny. The bad news was that my Social Security and private insurance applications were quickly approved, with little additional scrutiny. I mean, these two organizations didn’t even put up a fight about paying me significant money for the next 20 years. Was I that bad off? I guess I was.

Since May 23rd, how have things gone for me? Who have I become, if I’m not working-Mitch anymore? I’m still trying to figure that out (really, who isn’t), but I’m doing OK. My disease has continued to progress, at least up to the point of my CCSVI procedure in March of 2010, and maybe even since then. I can’t tell.

But I’ve adjusted to being disabled-Mitch. As it turns out, life goes on after work. I still have an identity, sometimes a rather complex one, even though it does not consist of a profession, and I'm okay with that. I suppose I could sit around all day and worry about what MS might take from me next, but that wouldn’t do me any good.

I think I’ll just enjoy each day for the gift it is, thank you.
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  1. Hi Mitch,
    Excellent post, difficult to make the transition from working to handicapped and not working.

    I found it very difficult, only just coming to terms with it now.

    When I made my application for dishability money I hated it wanted so much for it to be a temp.application.

    Hope you are enjoying the moment right now.

  2. Mitch - as usual your approach to disability is similar to my own. Once I decided I was done the next step was a neuropsych evaluation that showed my mental abilities had declined compared to similar healthy individuals with equivalent education. Man that hurt. It turned out to be the best course of action as the paperwork flowed very easily given the medical certainty. I was lucky in that my final employer, Microsoft, had a good support system in place to get the process moving. Surprisingly, given the many stories of troubles, my application was approved on the first try too.

    Now as to adjusting to the retired life (which I prefer over calling it my disabled life) it was quite a trick to adjust from many hours, much responsibility, to neither. I didn't miss the stress that's for sure. I did miss the intellectual stimulation and working on something important.

    My solution, as I've shared with you in the past, is to focus on 5 core areas:
    1 - Family time
    2 - Learning
    3 - Helping, Pay it forward, volunteer
    4 - Creating - writing, art, music
    5 - To do items

    Focusing my time around those 5 areas helps me to maintain family stability, continue to be a life long learner, giving back to the community, creating new ideas and pictures to express my thoughts, and getting the piddly things done that come up each day - like folding laundry or paying bills.

    Answering the question of "Who am I now?" takes some deep thought and time. In some ways losing a career needs to be grieved like any other thing that MS "takes". Our struggle was encapsulated in a TED talk by Jill Bolte Taylor, a neuroscientist that suffered a stroke. She said "I'm still me, just a different me now."

    Link to the talk:

    Thanks for your post!

  3. Yeah, Mitch, what you said. All of it (except the CCSVI part).

  4. Oh, Mitch, did this ever strike a chord with me! I, too, had my profession [education] so intertwined with who I was, that the actual leaving struck me hard. The disability application for me, also, went quickly and smoothly, but left me saying, "Oh crap, I really am disabled, then." Glad to hear that you're doing well emotionally with all of it -- you're very strong.

  5. Mitch,
    Boy did this strike a nerve. First of all, you beat me by a month and a day (June 24, 2009). Second, my transition was anything but smooth. My disability was originally denied leaving me caught in between already having announced my retirement and not being able to. Add in the normal bull crap from the insurance companies and I was in a world of hurt the entire summer. Long story short, clinical depression, lost fifteen pounds, went on Zoloft in October. Everything has been great ever since. I also credit you and Kamikaze Marc for showing me the light. Thank you guys. I owe you my hapiness.


  6. That roast was the most fun I had at work! I really wish we had recorded it! Jen

  7. You just made me realize that my 4 year anniversary just came and went on May 12. This is probably the first year that I completely forgot about that.

    Not to undo any work that feminists have done on my behalf, but it might have been socially easier for me to retire due to disability as a woman and a mom.

    The way I retired was different because I was RRMS. I thought I would get better. The MS had actually turned to aggressive SPMS so I never did get better. That was a tricky transition for me, realizing there were to be no more remissions.

    My employer and co-workers were not surprised. My disability insurance and government disability (Canada) were easily convinced too but the endless paperwork and hoop-jumping were exhausting when you are already dealing with a devastating condition.

    I am very fortunate that I still have a close relationship with the co-workers that I liked. I talk to at least one of them daily via the internet or other means. I'll even be hosting a baby shower soon for the folks at work.

    Thanks for bringing this topic up. It's great to hear how you and others have dealt with this tender issue.

  8. Herrad,

    Thanks for stopping by. One thing I didn't mention, but you may have felt to, is the "shame" associated with going on disability. We're raised to be self-sufficient, and going on disability is a bit like accepting a handout, which elicits shame (shouldn't, but does).


    I toy with calling myself retired too sometimes, but then, if it is an online friend for example, he or she might say, "oh, you don't look that old in your pictures." So I vascilate between saying I'm disabled and saying I'm retired. Sometimes I call it "disability retirement." You are a very contemplative person. Thanks for sharing your thoughts and that link.


    parallel universe?


    Thanks for stopping by and commenting. I guess those of us who's application goes smoothly should not complain about it...see Charlie's story in the comment after yours.


    That is a horror story- everyone's worst fear who goes for disability (except that it did eventually work out for you). I'm glad that I've been of some help along the way.


    Thanks for organizing that roast. I still have the powerpoint slides, etc, and I look them over and laugh once in a while. Unforgetable sendoff!


    You are right, although women's rights have come sooo far, there remains some sentiment in society that an unemployed man is worse off than an unemployed woman. I agree, it is nice to stay in touch with former coworkers. I had lunch with a coworker yesterday, and then stopped in the office for a visit and caught up with a few folks.