Wednesday, September 4, 2013

Coping with Chronic Disease

 (Photo credit: Wikipedia)
I can no longer type, and I can’t hold onto a book. I am unable to raise my arm high enough to wave at a friend. I am incapable of getting into bed by myself. I can’t eat, dress, or bathe without assistance. I’m still able to wipe my ass, but barely.

All of my great outdoor passions have been taken from me: snowmobiling, hiking, hunting, golf, camping, and ATV riding. I can’t drive a car, and I can no longer operate my handcycle. I can’t shuffle, deal, or hold on to playing cards. It takes great effort for me to sign my name, and that’s all I can do with a pen.

The insult “he couldn’t hurt a fly” applies literally to me. I can’t swim, or bike, or jog. I can’t walk, stand up, or even crawl. I can’t get up when I fall.

These are just a few examples. I could give you so many more.

And my condition is probably going to get worse over time. Nobody knows why I have MS. Nobody knows how to cure MS. There aren’t even any FDA approved treatments for my type of multiple sclerosis.

And yet…

I still love my life. Having MS sucks, but it hasn’t made me bitter or particularly sad. Here are a few reasons why I still wake up almost every day with a positive outlook:

I’m not wet, cold, thirsty, or hungry. I’m not afraid, intimidated, or abused. I enjoy broad liberties and freedom of expression.

I can still see, and hear, and speak. I can swallow food and breathe on my own. My bowels and bladder still (pretty much) work. I’m not suffering from constant pain. I can operate a computer using a mouse and Dragon. I’m able to sit up in a wheelchair. I can scratch most itches.

I have a diversity of interests which occupy me all day long. I own two amazing wheelchairs, a wheelchair van, and an accessible house. I have a strong support system, led by my incredible wife. I am loved and appreciated and well taken care of.

I smile and laugh every day (is this a cause or effect of my contentment?).

These are just a few examples. I could give you so many more.

So I ask you, what right do I have to complain?

Originally, I planned to end this post right there. Dramatic, huh? The implicit message would have been that everyone should be thankful for what they still have and not lament what they’ve lost. There’s no room for self pity. If I can do it, then so can you.

But I need to be cautious, because the last thing I want to do is be insensitive to people who are unable to cope as well as I do.

For example, I recently received an email from a reader who wondered why she couldn’t be as content as I am even though her MS disability is less severe than mine. She feels sad about having MS, and she also feels guilty about not handling it in a more positive manner- a double whammy. She holds me in unduly high regard for the apparent bravery I display in coping with my disability.

As I’ve stated many times before, I believe my ability to see the positive in an otherwise difficult situation is due more to my genetic makeup than any courage or intestinal fortitude. I should be envied more than I am admired. Individuals who struggle with adversity and are unable to notice the silver linings are not inferior or weaker people. It’s just that this particular skill doesn’t come to them naturally; they have to work at it.

For those people, I recommend going through an exercise similar to what I did at the beginning of this post. Acknowledge what you’ve lost, but also be thankful for all that you still have. I know of several readers whose list of items to be thankful for is not as robust as mine. But I know of no one whose list should be empty. I understand that this exercise probably won’t be enough for most people. There are also resources available on the internet which provide strategies for coping. I am unable to personally recommend any of them, as I have not researched the subject myself.

Additionally, you might benefit from revisiting two of my earlier blog posts. The first one is entitled My 10 Keys to Resilience. I suggest that you read the post in its entirety, but here is the list of those 10 items:
1. Don’t ride emotional roller coasters
2. Don’t become too attached to any particular activity or pastime
3. Accept that life does not owe you anything
4. Stay connected with people
5. Remain inquisitive
6. Get out in the world; don’t withdraw from it
7. Enjoy each day as if it could be your last (please forgive the cliché)
8. Have hope, but don’t rely on it
9. Find the humor in life
10. Give yourself a break
Half a glass of water
Half a glass of water (Photo credit: Jeff Youngstrom)
The second blog post that you might revisit is “Remember, There Is Always Someone Worse off Than You:” Is This A Valid Coping Mechanism? I explore this question in some detail and conclude that the answer is yes.

It’s not only people with chronic, disabling diseases who struggle to find contentment in this sometimes cruel world. Anyone at any time might experience depression or despair. Sometimes this necessitates clinical intervention, but other times it just requires a fresh perspective. I hope that this post has been helpful in that regard.

In closing, here is a quote from Helen Keller, who was uniquely qualified to address this issue:

“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”
Enhanced by Zemanta


  1. Thank you for this Mitch!!! Just like there is always someone worse off than ourselves, we all have our good days and bad days. Your tips for being happy with what we have are such great reminders.


  2. Mitch, I agree with you--I think the attitude can be learned, but it is really hard work and takes time.

    Fortunately for me, I learned it before I was diagnosed with MS in 2003. I learned it years ago when I was going through a very dark time. I couldn't understand why I was so negative and unhappy when I had so much going for me but I seemed caught in a net of misery and I couldn't find a way out.

    But I made a conscious decision to change and some people gave me suggestions on how to do that and I tried a lot of them and in 6 months, I could see that I was no longer negative 70% of the time, it was now only 50% of the time. In another 6 months, I was amazed to realize that I was fairly happy 70 - 75% of the time.

    I began to recognize the negativity when it started (my sense of humor was always the first to go) and was able to ward it off. In another year, I think I hit 90 or 95% positive and have remained there by keeping an eye out for warning signs. In the 5% negative times, I am so miserable and grumpy and detest myself and my mean tongue (which I used to think of as sharp, biting wit) that I just don't stay there long.

    I only say all this to give hope that it's possible. Being willing to change is the first and toughest step and after that it turns into wanting to change. (note I said wanting to change, not wanting to be happy.)

    I can truly emphasize with people who feel trapped in negativity because I'm so grateful that I found a way out. Look what it has given me--an amazing life, even with progressive MS and creeping disability. In fact, even that has had its benefits: it has given me some patience, which I always wanted but never had the time for it. Well, hah! I have plenty of time now, which just seems hilarious to me.

  3. I see this post as a much needed pep talk! Thanks for reminding me to be thankful for what I have, and not dwell on the dark side. Your spirit is amazing, and we all -- abled AND disabled -- can learn from it.

  4. Kathy, I'm glad that you liked it.

    Daphne, what a wonderful success story. Thanks for sharing it.

    Muffie, yes, that is kind of what I intended – a pep talk. there is nothing here that most people didn't already know.

  5. Mitch, I share your pain, and also your generally positive outlook, although I have no idea why.

    I know that sometimes I just need to get the heck away from MS, as much as I can. I can't escape the physical disability, but I can stop reading about it, and talking about it, and thinking about it, and writing about it. As much as I care about the welfare and doings of my Blogger Buddies, sometimes I just need to stay away for a while.

    Works for me. I always come back :)

  6. Mitch,
    I wonder if the example your Mom set also gave you an extra plus of dealing wth life's circumstances.
    Bless her heart!


  7. Zoom, I hear you. That's why I write about things other than MS sometimes.

    Dee, you are so correct. I was remiss not to mention her in this post.

  8. Great post Mitch!

    The MS cloud hangs over my head sometimes too. Usually I need to recognize that's what is going on before I can address it. Maybe you've found yourself there too?

    It takes a conscious effort of will to focus one's mind on a new perspective, and boy does it take vigilance!

    Here's something quite unexpected to me - shocking the system by facing a fear head on and taking the plunge - literally - refocused my outlook.

    At this year's Seattle Maker "Faire" I was zipping around and met another lady with MS in a wheelchair. And she invited me to go skydiving. Say what? I thought that was for young, healthy punks! But she's "jumped" out of a perfectly good airplane several times. So I figured if she could do it, and her legs were worse off than mine, then I could too.

    So I did. They strapped me to a professional sky diver, she threw us both out the plane, we free-fell for a minute, she deployed the chute, and she landed us safely on the ground in a grass field on my keister.

    And I'm going to do it again on Sunday with my wife and nine other friends.

    I add this to your post only to provide the perspective that sometimes there are things I dismiss as no longer possible when I don't need to (which opens my mind to considering what other things I can still do that I want to), and that I was surprised that challenging myself in this way lifted my spirits and changed my outlook.

    And just to be clear, hey, I'm not suggesting everyone with MS should go jump (or get thrown) out of an airplane.

    Thanks for your post Mitch. Your posts are one of things in my week that make me happy!

  9. Darren, what a wonderful story! Congratulations on taking the plunge.

    I did struggle a little bit with that issue as I was writing this post. I sounded a little bit defeatist by clearly stating that I was unable to do all these things. But from a storytelling perspective, I wanted to contrast all that I have lost with my ability to accept it and move on. I had to build the drama in the first half of the post in order to make the part after "and yet…" really jump out at the reader.

    But in the spirit of you jumping out of an airplane, I haven't completely lost all of the things I listed. For example, there are still ways for me to hunt, and there still might be ways for me to peddle a different kind of hand cycle, etc. I just haven't pursued these options yet. Perhaps your story will inspire me to, and then I'll write a different kind of post :-)