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 (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.”