My wife stood out among the rest of the high school freshman because of her nice ass and playful personality. Those were the criteria I had for selecting the person who would eventually become my life partner. Brilliant.

She was 15 and I was 16. I know what you are thinking, but no, the Frankie Valli song goes, “she was fifth grade, I was sixth”. Our story is cute…but not that cute. Anyway, Kim almost immediately decided we would be married. It was years before I realized that this decision had already been made for me, that it was the right decision, and that I really had no say in the matter (although she may have created that illusion in order to humor me).  This was to become a lifelong theme in our marriage. She almost immediately knows what should happen next, and she waits patiently or gently nudges me, until I finally come to see the light. When she’s in a particularly generous mood, she allows me to think that it was actually my idea in the first place.  There was that snowmobile I bought her (me) for Valentine’s Day one year.  That was all me. 

So if you read my initial post in this blog you know that I listed Kim’s caregiving as one of the factors I have working in my favor- one of the reasons I lead such a contented life as a disabled person. Actually, I think that it’s a little misleading to list Kim as just another tool in my disability toolbox. There is no person, organization, or medical device in this world that is more responsible for my happiness and well-being than my wife- not by a long shot. 

We married after I graduated from college, even though Kim had one more year of school to go. We lived in Ohio and Vermont but returned to Maine to start our family. We worked hard and did our best to raise our children well, but I won’t deny that we took some time to have fun along the way. As our children became more independent and our careers successful we were setting the  table for a wonderful empty nest stage. Our relationship was strong. We had played by the rules (for the most part) and we were poised to reap our reward. It was likely we’d travel. Maybe we would buy a second home on a lake or near the ocean, or maybe we’d buy that big fancy camper that requires an oversized pickup truck to haul. We’re still suckers for sitting by a campfire in the evening.

These are the things I wanted for my wife. She deserves it. But life is not like a bank account. Just because you make deposits doesn’t guarantee that you will enjoy withdrawals later. There is no FDIC insurance working here.  Life doesn’t owe us anything. Life simply happens, and you make adjustments to the best of your ability. I just felt a momentary urge to mention something about lemons and lemonade, but I supressed it because I‘m afraid I’d lose half the readers, and justifiably so.  Close call.   

I find it difficult to believe, but the divorce rate is remarkably high among couples where one partner becomes disabled. For us, I think just the opposite has happened. We’ve grown closer by facing our challenges together. Although our lifestyle is not (and will never be) what we once imagined, we are making the best of it. And I’m not convinced that we’re any less happy than we would have been with the travel, or the second home, or the big camper. Who knows, maybe we will travel a bit.

There must be books written on the challenges faced when a spouse takes on the added role of caregiver. Without having read any of them, I am certain that there is a consistent theme in each book about how the disease can be as trying for the healthy spouse as for the sick spouse.  I believe this. I’m not just playing the martyr when I say that I’m glad it happened to me instead of to Kim. I’m actually being a bit selfish about the whole thing.  When you’re standing on the outside and watching your sick spouse it must be difficult to know the right thing to do or the right thing to say. You can’t tell if your spouse is about to fall and needs you to provide a cushion or if he/she will be annoyed because you interrupted what was going to be a successful maneuver. When you’re on the outside you can’t tell if your spouse is in serious discomfort or is just grimacing because he’s got, well, killer gas. I suppose Kim can’t know for sure if the disease is actually making me despondent and I’m only faking contentment, or if I’m really doing OK on the inside. Kim, I’m really doing OK.

I feel very fortunate that I have a life partner, best friend, and now primary caregiver as wonderful as Kim. However, I deserve no credit for this decision made so many years ago. I didn’t choose her because I thought she would make a great life partner. I already told you why I chose her. I just got lucky, very lucky. Kim has a contagious passion for living, and is a wonderful mom. She is thoughtful and caring, sexy and fun-loving, intelligent and dedicated, optimistic and industrious, loving and patient. She could’ve done so much better than me, but I’m glad she didn’t.

It’s just another example of the charmed life I lead that to this day, in addition to everything else, she still has a nice ass and a playful personality.

I love you Kim.  I sleep well knowing that no matter what challenges await us, the ones that are on our radar as well as the ones we don’t even know about yet, we’ll be facing them together.  And even more importantly, the joys that we’ll experience in the coming years…we’ll be celebrating them together.   

Maybe we’ll celebrate another World Series win this year? Uh, well, ya, maybe.

Image by Esthr via Flickr

I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair . My friend remarked, “you could hurt somebody the way you drive.” She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he’d probably just dust himself off and apologize to me.”

Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):

1. If you’ve read my earlier posts you know that I have a high-tech wheelchair. If you’d like to know how it works, and I’m not in a big hurry for some reason, I’ll probably tell you everything I know about it. However, I would appreciate it if you don’t cause a scene. Please don’t yell out in the middle of a busy shopping mall, “Earl! Earl! Get over here! You’ve got to see this! This chair is the freakiest thing I’ve ever seen!” This really happened to me last week.
2. If you are so inclined, feel free to offer me assistance with tasks. However, if I say “that’s okay, I have the door” then please don’t open the door for me anyway and just get in my way and turn what was going to be a slick maneuver into a pileup in the doorway. In many situations I wholeheartedly welcome offers of assistance like this. So please don’t take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to offer assistance if it feels right, but be prepared to step away if your offer is kindly refused.
3. Personally, I find it okay if you ask me “why are you in a wheelchair?” It gives me a chance to advocate for my favorite disease. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
4. On a related note, unless we are close friends please resist the urge to give me advice on how I can be fixed. Most of the time a person is in a wheelchair because of serious injury or illness. However, I don’t know how many people have, upon learning that I have MS, blurted out the fact that they know the cure for MS because of a friend or relative’s experience, and here it is! In contrast, an acceptable conversation starter would be, “did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. I have no doubt that your heart is in the right place, but remember that there is a 99% chance that I know way more than you do about why I am broken, and what I can and cannot do about it. I’ve spent hundreds of hours studying this.
5. Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, do not go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. I am hereby publicly apologizing for all the toes I already have, or may in the future, run over.
6. Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. “You poor thing. I feel so bad for you,” is not good.
7. Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is really annoying.
8. When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
9. A couple of months ago I was preparing to leave a restaurant, and sat before the exit trying to determine the best strategy for getting through those big heavy doors. Sure enough two young men zigzagged around me and barreled out of the restaurant without even asking if I could use some help with the doors. If you see a disabled person pausing in front of a door, then there’s a good chance that they would appreciate somebody holding the door open for them. After the doors slammed behind the two young men I threw my arms out in disgust, a pure reaction, and a waitress saw me and opened the doors for me. I was a little embarrassed that I had reacted in that demonstrative way. I don’t feel “entitled” to help from everyone who comes along, but the situation just struck a chord with me.
10. Finally, if your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile I’ll get one right back.

I hope I haven’t made it too complicated for everyone. I will reiterate that the vast majority of my dealings with people in the community are very pleasant and respectful, and are not like those described above. Now get out there and interact with your favorite cripple disabled person!

I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.