Friday, September 25, 2009

My MS Story Chapter 10 – You can’t handle the truth! OK, maybe you can.

It's an awkward position to be in- strategizing about the ideal time to reveal the truth to someone. But then again, MS has placed me in quite a few awkward positions.

The job offer came in. We negotiated a little bit and then I verbally accepted. My new boss had convinced the owners of this small but fast growing company of the merits of hiring me for this newly created position, and he seemed very pleased to have brought me on board. Based on a skill I had honed as a teenager when asking Dad for the car keys, or breaking the bad news to Mom that I got another B in high school, I identified this as the opportune time to talk to my new boss about MS, you know, 30 seconds after solidifying our new arrangement.

"There is one thing I want to make you aware of," I said over the phone. "I've been recently diagnosed with MS, and it somewhat affects my ability to walk long distances. I have to stop and take breaks before I continue sometimes."

"Oh, no problem." Ted was a very up-beat and can-do sort of guy. I’d caught him on an emotional high, and at least on the outside he absorbed this information with polite indifference. Only Ted knows if there was another voice in his head saying, “Yup, I should have known this hire was too good to be true. Damn.” I doubt it though.

Ted continued, "I don't see why you can't just stop and take a rest whenever you need to at these plants and job sites that we’ll be visiting. When can you start?"

Thus ended my several months of unemployment. I would work at this company and its subsequent incarnations until I left the workforce for good in 2009. What an incredibly understanding employer they turned out to be. Every reasonable accommodation I requested was granted (I didn’t request any unreasonable accommodations. Should I have?). But more importantly they treated me like a normal person. They let me tell them what I was physically capable of doing and not capable of doing. They didn’t make assumptions about my abilities based on my diagnosis. They were, and still are, a wonderful group of people, and I miss them.

With MS, it's often not only the symptoms that get you; it's the uncertainty. For those of us with a progressive form of the disease the uncertainty isn’t about how you’ll feel tomorrow, or in what way the disease may attack your body next week, as is the case with the relapsing/remitting form of MS. Nothing happens suddenly with PPMS. I am highly confident that tomorrow I will feel very much as I do today. That is the good news. However, I also know that today I will be noticeably worse off than I was six months ago, and this deterioration will be both permanent and irreversible. That’s the bad news.

With PPMS the uncertainty lies in what tasks you can still complete, and which ones you can’t. This is acutely evident during seasonal activities. "Hmm, I didn't have this much trouble raking the leaves last year." Or, "I guess I can’t shovel the snow anymore.” Was I really and truly upset when I determined that I could no longer operate a push lawnmower? I’ll let you guess the answer to that one.

I was wedged in this nether land between being healthy and being disabled and my plight was invisible to the uninformed observer. I actually began to wonder if being in a wheelchair would be a preferable situation. My condition did not warrant a wheelchair yet (that was still years away) but the concept held a certain appeal. First, it was a more stable, less unpredictable condition. When you are in a wheelchair you don't have to wonder so often what it is that you are capable of. There is a clear group of activities that you can do and a group of activities that you can't do. Second, when you’re in a wheelchair you don’t have to describe your level of disability to other people. They can see it the minute they meet you. “Oh, he's in a wheelchair. OK, then I won’t ask him to join me for a jog after work.”

It’s not that I really wanted to be in a wheelchair.  The salient point here is that I was frustrated enough with my situation that I was having these types of internal debates at all.

Here are a few notes, taken verbatim from my journal in the fall of 2003.
11/6/03
Went hunting for the last three days at camp with Andy. My hunting ability is significantly diminished from last year. My left leg is too weak to lift over obstacles. My balance, from weakness, is so poor that I have to hold on to tree branches on almost every step. I’m OK for a few minutes, but as soon as I get tired then it becomes difficult. I almost fall frequently. I fall occasionally. Essentially, I can no longer hunt in the woods. I am relegated to fields and roads/paths. I can still get in a tree stand with a good ladder.
     11/25/03
    Shot a doe deer today with Dean and his father.

    11/30/03
    Preston helped me cut up the deer. It was a lot of work. 

     12/02/03
    Took my last dose of Methotrexate. There is no evidence that it is helping, and there are some small risks
    associated with taking it.

    12/14/03
    They caught Saddam Hussein today.

And so ended my second full year with MS. I wasn't doing great, but I was doing better than Saddam Hussein.



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