My MS Story Chapter 37 – Long Term Disability

(Photo credit: SalFalko)

“Hard work never killed anybody, but why take a chance?”
  - Edgar Bergen

May 23^rd, 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.

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 23^rd, 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.