Answers to Questions

Answers to questions

My brother’s wife raised a series of interesting questions for me to address in this forum. I hope the answers are insightful.

1. If you could eliminate one symptom, which would it be?

Mouth-watering question, but I think I would want my voice back. I don’t mean to sound ungrateful; I still can and do communicate verbally, and I can even sing a little, but if I could have my full voice back there is a chance that I could work, at least part-time, and I could sing again to my baby. You know, it is so pathetic: last month I took my PC with me to tuck her in and I played “Edelweiss” on iTunes for her. (At 11 ½, she’s rapidly outgrowing shenanigans like that.) Maybe it’ll be back for my grandchildren.

2. Do you look at people with disabilities any different now than you did before your illness?

Totally. If they obviously “have” something, I don’t hesitate to ask. I understand there is absolutely no shame in it, and they are probably eager to explain. And they are probably wondering what my problem is too.

I used to wonder when I saw people park in the handicap spaces and then just walk from their car. I don’t do that anymore, because I know that sometimes you park in the handicap spot no so much for the walk into the store when your legs are fresh, but you know that when you return it might be pretty dicey. (Most of the time I don’t need to use the spot, and I don’t.)

3. How has your perspective on enduring to the end changed?

I don’t know how to answer this question. It isn't that getting through every day is just so difficult. It's not. Yes, there are rough spots each day but I'm not in pain and for the most part I mostly think about that things I need to get done that day, not endurance per se. Having my health compromised I am much more appreciative of the health I do have and of life in general. I am not trying to side-skirt the question, but I don’t think I have any useful insights here.

With respect to "the end," I sometimes get the sense that, because of how I sound, sometimes friends believe I might be on death's precipice and say something kind to me just in case. And then I don't die for a long time. That is weird. (I'm sorry to disappoint them, but I'm glad too.) I mean, they don't want me to go yet, but it would be ideal if I ever had some dramatic improvement to accompany me, but week after week, I am about the same.

4. Do you live your life with hope of a cure or remission or is it easier to live your life assuming this is will be with you for the rest of your life?

It is kind of a balance. You have to have hope, even though I realize that I may never be restored to full health. I have hope with every supplement I take and with almost every meal I eat. Although with some meals you (and my nutritionist) would think “OK, he’s given up.” But I haven’t. I am getting used to it but I am not resigned to it. Does that make sense?

5. You've mentioned depression as an issue with this illness. Has that gotten easier to deal with or is that a constant battle?

It has gotten easier. I have found that I am much better at living with a limitation than getting one. Back in ’07-’08 I think it was more than just getting a little down, there was something in either the disease or the meds that was really wreaking havoc. But I have learned that the less time you spend thinking about yourself, the better off you’ll be. It is still a challenge to fill my days with constructive activity, especially when a wave of fatigue levels me, but I’m getting better at it. I am nowhere near as volatile and moody as I was in the past.

Favorite sister-in-law? There is no way to answer that on any objective scare; O just love all seven of them!

What if

My brother asked me to consider, and then report on my blog, what I would do first if I awaken one day and my symptoms had vanished. My initial reaction was “Go back to work” which I know is unsensational but it would be a top priority.

I’ve given it some thought, and I guess my first action would be to ascertain if indeed I was still living. I am certain that death will cure me of MS, and I would somehow try to see if that had happened! Assuming I was still living, I would awaken Kara (which might end my life anyway) and I would talk a lot.

Resuming my employment, or seeking new employment, would be the overarching priority, not just because I love to work or I feel there is a spreadsheet out there waiting to be created or data in need of analysis. There would be an economic urgency, as my disability pay stops when my disability ceases, but that is not the main reason either. It is just that over the last 2 ½ years as I have been unable to work, there has been a domino-effect on my self-esteem, my relationship with Kara, and with my children. I would be eager to reverse that fall-out if I could.

Assuming I had done everything I could on the employment front, and I was going back to work tomorrow, I would offer to resume bedtime stories to Natalie, I would sing with Erika, I would call my parents and all my siblings, I would call a few friends, and I would sing some more. A lot. I would be so annoying. (There might be some new fall-out.)

I like to think that I would first offer a prayer of gratitude, but in truth, I thought of all that other stuff first. I guess I would be like one of the nine lepers.

I would love to resume tennis and I would start running. Maybe train for a marathon. Or at least a 10K. Or a 5K. (Do they have 3Ks? You know, just to get you started? Presently I would really struggle to complete a 1K.) I would learn to wrestle. I would take a trip to Utah to show off for one of my favorite gals. If it were winter, I’d take her skiing.

OK, I am done with this musing. I don’t do it often because I am content with living in the present, and learning to live with my limitations, but I guess it doesn’t hurt to dream every once in a while.