When I Say WE, I Mean YOU

Because I can barely do anything physical, Kim and I have this running gag.

“Kim, we need to mow the lawn, and by WE, I mean YOU.”

“Kim, we need to build a brick patio, and by WE…”

“I know, Mitch. I know. When you say WE, you mean ME!”

As satisfying as it may seem to lounge about and do nothing other than make suggestions and dispense praise or criticism, I’m saddened that I can’t contribute more. Before my diagnosis there were some chores I hated and others I liked. I particularly enjoyed anything that made the outside of our house look better. I was the guy who took care of the swimming pool. I did most of the mowing and at least half of the raking. I loved to cut, split, and pile firewood. I enjoyed pruning trees and bushes. At two of our homes I installed fences. I can’t say that I loved to mow the lawn, but I can’t say that I hated it either.

Today, it eats away at me to see these opportunities and not be able to do anything about them. I have to be careful to not overwhelm Kim with my “Honey, we need to…” suggestions too. In fact, this is one of the few areas of friction in our marriage. I need to do a better job of either cutting these requests to a bare minimum or delivering them in a more thoughtful, considerate manner. Alternatively, if I whisper my requests in her ear while she sleeps she might awaken with the inexplicable urge to do exactly what I suggested. I think I like that idea better.

It’s not as if Kim used to be timid, and all of a sudden had to grow a pair. She’s always had enough audacity to dive headlong into complex projects that she may or may not have any business attempting. Fortunately for us, they usually turn out well.

Also, it’s not as if she loved to lounge around and take it easy before my diagnosis, and now she is forced to get up off the couch. In fact, another running gag of ours pokes fun at her inability to kick back and relax. She seldom reads for pleasure and won’t watch movies with me. This is probably a diagnosable and treatable disorder. No doubt there is a pill that she could take to cure this brand of crazy. But I hope she never finds it, because I like her and my household just the way they are, thank you!

Another motivating factor for Kim is her extreme frugality, which she comes by naturally. I sit back at a safe distance when Kim and her parents devour the coupons and flyers in the Sunday paper. Because of this genetic trait, Kim can’t stand to hire professionals to do any work around the house that we might be able to do ourselves, and by we I mean her. Recently, however, she has exhibited some cracks in this facade, and has not completely discounted the possibility of us hiring some help for a couple hours a week, but I’ll believe that when I see it.

I’m not the only one who comes up with ideas for projects. Yes, I was the one who pushed for the patio that she built this summer (to the right and below), which is nearly identical to the one she built at our previous home (above). Our friends, Khoren and Kelly, who purchased that home from us two years ago, are still enjoying Kim’s first patio. But Kim is the one who decided on her own to paint every room in our new house, to change all the hardware on the kitchen cabinets and every doorknob and hinge in the house, to put hardwood flooring in Zach’s bedroom, and to refinish and paint all of the kitchen cabinets. She will undertake those last two projects this winter. Kim is fairly accomplished at installing hardwood floors (picture at top of post), but this will be her first kitchen cabinet refinishing. Does anyone have advice for how we (Kim) should approach that project?

To summarize, Kim now does all the things that she used to do, all the things I used to do, and all of the additional tasks associated with taking care of her disabled husband. Kim is able to accomplish this because she is a restless penny-pincher, and a loving, caring, and incredibly awesome person.

Thoughts on MS and Aging

I liken MS to premature aging. Not everybody has MS, so it’s sometimes difficult for people to identify with my situation. But everyone gets older.

At certain milestone birthday parties, like a 40^th or 50^th, well-intentioned friends and loved ones often poke fun at the guest of honor by presenting him or her with symbols of old age such as adult diapers or a cane. It’s all in good fun, but it highlights the fact that items such as these, and many more, are associated with growing old, and growing old is associated with becoming feeble. And if MS is like growing old, well you get the picture.

Then there are ailments which are all considered part of growing old: cognitive decline, fatigue, stiff joints and muscles, sensitivity to both hot and cold weather, and balance and strength problems. Another classic marker of old age is the propensity to watch the Price Is Right. These are all blessings that MS has bestowed upon me, albeit prematurely (remember to have your pets spayed or neutered).

Many older people are known to complain about their accumulated infirmities, and perhaps they have earned that privilege. But in certain instances those who are complaining should take into account whom they are complaining to. For example, my father found it more and more difficult to walk pain-free during the last few years of his life. Out of sheer habit he repeatedly grumbled to me about this unfairness, and how growing old was a burden. He did this as I listened to him from my wheelchair, in my mid-40s. On one level I was offended by his insensitivity, but in the end I just cut him some slack – he was inconsiderate but not malicious.

When I go out and about in our neighborhood during normal working hours I am often embraced by the retirement crowd as one of them, even though I’m clearly much younger. Just yesterday I was at the grocery store, in the embarrassing medicines aisle, when a very kind 73-year-old gentlemen approached me and struck up a conversation.

“What did you do for work?” he asked. I looked at him with some level of bewilderment. Sensing my confusion he said, “I assume you don’t work anymore?”

“Yes, I am retired,” I replied. “I used to be an engineer.” Apparently this is how retiree small talk works.

We each went on to brag about our children, and in his case, grandchildren. We also complained about the weather, the rising price of everything (even though inflation has never been lower), and several other injustices. He was a very pleasant fellow, and I enjoyed our conversation. Me and the old folks – we get one another.

As my abilities continue to fade in certain areas, I sometimes can’t determine if it is due to normal aging or if it is due to the progression of my MS. If I start to forget people’s names more often than I used to, is that MS progression or normal aging? If I need to take two naps a day instead of one, MS or normal aging? Become constipated? MS or normal aging? In the end, the root cause doesn’t really matter because the treatment, if any, is the same. But nevertheless, I occasionally lose sleep wondering exactly which incurable affliction is putting the screws to me, the one that everybody has or the one that only a few of us have.

I think we can all agree that certain aspects of growing old suck. But having the body of a 95-year-old when I’m only 49 sucks the big one.

Until scientists solve the aging problem, and Ray Kurzweil predicts this will happen as early as the year 2045, old age stereotyping and good-natured ribbing will continue to exist. Do I feel uncomfortable when this style of humor is used at milestone birthday parties? My honest answer is yes. However, I’d rather be invited to the party and feel uncomfortable for a few minutes, than not be invited at all.

Bonus Time

Nature (Photo credit: @Doug88888)

This post was originally published in 2011, but on the heels of last week's post, I think it is particularly apropos. Enjoy.

My friend Keith ruptured his aorta a few years ago. The bleeding was slow enough and the medical attention he received was timely enough that he survived, despite the odds. If not for outstanding doctors, strength of will (his and his wife’s), and good fortune, we would've said goodbye to Keith years ago.

My mother-in-law was diagnosed with breast cancer a number of years ago. It was a large tumor and she was given a 50-50 chance of survival. It could've gone either way. But due to her indomitable spirit, the support of her loving husband, and modern medical technology, Carole is still with us.

Congresswoman Gabrielle Giffords was shot in her head (in her freaking head!), point blank, by a deranged assassin. Yet she not only survived, but is growing stronger each day.

Keith, Carole, and Gabby are all living on bonus time.

It is heartwarming to learn about people who have cheated death. The heroes of these stories have each acquired a renewed appreciation for life, having come so close to losing it. In some sense don't we envy these folks? Don't we almost wish for our own near-death experience, so that we could stop taking life for granted, so that we would have legitimate grounds to cherish each and every day?

I'm here to say that we can all breathe this rare air without battling cardiac failure, overcoming cancer, or surviving a shot to the head. If you think about it, each of us is already operating on bonus time. Here’s what I mean.

First, every single one of our direct ancestors had to successfully survive their own birth, avoid childhood diseases and maladies, live to childbearing age, mate and produce an offspring before dying of disease, starvation, war, or attack by sabertooth tiger. And except for the last 50 or 100 years, all of our ancestors did this without the benefit of sterile operating rooms, Facebook, or Prozac. Consider the odds that each of our family lines has overcome, generation after generation, to win this tournament of life. Although we may not have cheated death as palpably as Keith, Carole, or Gabby, we have cheated nonexistence by a considerable margin.

, U.S. Congresswoman. (Photo credit: Wikipedia)

Second, think about all of the people that could have been born instead of you, but never were. What if your parents had not met one another, but had fallen in love with (or at least had sex with) somebody else instead? The person that is you, with your unique genome, would never have been born. What if your mother, or her mother, or her mother, had come down with a headache (real or imagined) and hadn't been in the mood to procreate at the very second that she did. Because so much of who we are is the result of the random merging of genes from each parent at the split second of conception, if this moment had been delayed at all then some other child with different hair, a different personality, and maybe even a different gender would've been born instead of you. In the sense that you exist and all these other potential people don’t, you have been profoundly fortunate. Congratulations.

Third, think about all the close calls that you've survived, the first of which was your own traumatic and risky birth. Then think about how many times you’ve stumbled but caught yourself; how many times you almost crossed the street but at the last minute noticed a speeding car out of the corner of your eye; or on how many occasions you overcame any number of teenage and early adulthood risky decisions involving alcohol, drugs, and other dangerous behaviors. Frankly, thinking back, I'm amazed that I've eluded death for as long as I have.

By simply being alive enough to read this blog post you've overcome greater challenges than heart disease, cancer, or gunshot wounds to the head. You shouldn't be here. No one of us, by any statistical analysis, should be here at all. But we are. There is no need to wait for your own story of extraordinary survival. It’s already been written.

Give yourself permission to embrace that same zest for life that Keith, Carole, and Gabby already have. Stop sweating the small stuff. Stop giving a damn what everybody thinks about you. Most importantly, stop putting off your dreams for another day. Start living them today, because the splendid adventure that is your life is a gift that so many other potential people never got the chance to experience. If nothing else, don't we owe it to them to make the most of our good fortune, to live life to the fullest?

Joy (Photo credit: www.0260mkg)

And the size of the dream is not important- climbing all the great peaks in North America or trying to be a more considerate spouse. It doesn't matter. The same principle applies.

When you wake up each day, take stock of how incredibly fortunate you are to be here at all, remind yourself that you're already operating on bonus time, and then act accordingly.

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.”