Wednesday, February 26, 2014

Some Things I Miss (and a Few Things I Don’t)

Things I Miss
1. Walking (obviously) 
As a wheelchair user, I’m not only missing out on little slices of life due to accessibility issues. I’m also denied the many health benefits of walking. Every so often I stumble upon an article highlighting the importance of getting up and moving, like this one: Too Much Sitting Linked to Chronic Health Problems. I’ve grown to despise these reprimands. I get it already! Eventually, they all read the same to me – “Get up and walk, you lazy piece of shit, or suffer a horrible, untimely death.” 
I also miss out on other health benefits. According to this article entitled Mental Benefits of Walking, putting one foot in front of the other reduces mental decline, lowers Alzheimer’s risk, improves sleep, lightens the mood, and can even serve as a form of meditation. 
I enjoy accompanying people on their walks, although it just isn’t the same for me as it is for them. But please, continue to invite me along. 
2. Helping out 
Whenever someone encountered difficulty, it was in my nature to step in and help out. Kim couldn’t reach something on a high shelf; I would get it for her. Neighbor got stuck in her driveway during a snowstorm; I pushed her car. Friend bought a new dishwasher; I helped him carry it into the house. Today I am only a powerless bystander. I realize that I’m still helpful in other ways. For example, I manage our family finances and dispense husbandly and fatherly advice, perhaps too liberally. And I understand that I’ve taken on new roles with my MS advocacy. But I miss being able to just step in and lend a hand when needed. 
3. Typing 
Dragon NaturallySpeaking is a lifesaver. It allows me to put words to a page without the use of my hands. However, I still miss typing, for a few reasons. First, our house has an open layout. When I'm dictating to my computer everybody within earshot knows what I'm saying, and that doesn’t work for me (other than the most mundane tasks such as responding to a straightforward email). Second, I had a pretty decent respiratory cold last week and didn't feel like speaking to anyone, let alone my computer. Third, Dragon is only about 95% accurate. This may seem impressive, but keep in mind that a typical blog post is about 1000 words. That means I have to find and repair about 50 errors in each post. 
Although Dragon NaturallySpeaking is a wonderful thing, it’s just not the same as typing. 
4. Spontaneity 
There a lot of things I can no longer do. The remaining activities all require a certain amount of planning, or unusual attention to detail, or both. Travel, dining out, going to the ocean, even having sex, requires forethought and preparation. Sometimes, knowing that there is planning to be done is enough of a barrier to discourage the activity altogether. I’m engineery, so let’s not pretend that I ever led a carefree life of whimsy. But I do miss the modest amount of spontaneity I used to enjoy. 
5. Having a career 
I was not a workaholic, and I'd be lying if I said I loved going to work each day, but having a career was personally fulfilling. I always played an important role in the companies I worked for, and people seemed to want me on their teams. I miss the feeling of usefulness that came with my career. I also miss the travel, and the money. 
6. Being away from Kim 
Please don’t misunderstand. If you've been reading this blog you know that I love my wife dearly, and that even before my disability we spent most of our free time together. However, there were certain activities that I enjoyed which required that I be away from my wife. Some of these, such as going with the guys for a hunting or sports weekend, are not practical for me anymore. I need Kim’s help just to get through the day now. Similarly, Kim used to get away for professional conferences and the occasional ladies weekend. At the moment we have no procedure in place for anyone other than Kim to be my caregiver. We should, but we don’t. Kim and I can’t be apart for even a single night. 
7. Playing sports and games 
When I was diagnosed at age 38, I wasn’t playing in any men’s sport’s leagues. But I was active. I could shoot a little hoops, play catch, ping pong, bean bags, billiards, Wii, foosball, etc. I was competitive, and won my share of contests. Online cribbage and Words with Friends help, but they don’t satisfy my need for play and competition. 

But I Don’t Miss
1. Golf 
MS gets the credit for rescuing me from a game that cost too much money, required too much time away from my family, and left me miserable more often than not, except for that hole in one. (Please don’t send me links to handicapped golfing websites.) 
2. Dancing 
I always hated dancing. Now I can’t. (Please don’t send me ideas for ways that I can dance in my iBot.) 
3. Swimming 
I could swim enough to keep from drowning, but it was an activity I never enjoyed. We had swimming pools in two of our houses, and they were wonderful for the kids. I may have jumped in 5 or 6 times per year. I never found that the discomfort of having water get in my eyes and up my nose, or the initial temperature shock, were enough to warrant the meager benefits. I don’t miss swimming. (Please don’t send me links to handicapped swimming sites.) 
4. The bullshit part of my career 
As I mentioned above, having a career was a partially rewarding experience, which I partially miss. However, I cannot count the times that I had to deal with absolute bullshit at work. The problem was not tyrannical, immediate supervisors. Most of my bosses were excellent mentors and all-around good eggs. But that didn't stop them from asking me to do stupid things, for stupid reasons. More often than not this was the result of upper management feeling the pressure to meet month-end, quarter-end, or year-end goals. Satisfying this urge usually required the temporary suspension of sound business practices (like customer satisfaction). Once you start playing this game it becomes self-perpetuating, an endless loop of jumping through hoops. 
Fulfilling? Not so much. (Please don’t send me links on how to overcome my disability and reintegrate into the workforce.) 
For my healthy readers, what do you think you would miss most if you had MS or a similar disease? For my disabled readers, what is it that you already miss? What don't you miss?

Note: My longtime readers may recognize this as similar to a post from October, 2010. I made significant updates and improvements, however.
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  1. I miss all those things, too, except I'd have to move the golf and swimming into the "miss" column. I'd also add that I miss writing with a pen/pencil. I can still do crosswords (I'm an addict) in ink with my left hand printing the letters. (Don't send me info on online puzzles -- I do those, too.) I miss the drawing, calligraphy, painting, and needlework I used to do. I try to just fill my days with other activities and not think about the things I've lost, but often that glass half empty attitude slips in.

  2. most of the time, i think i could just copy and paste from your posts to my blog. your thoughts are so close to mine, and i think you express them better than i could. i miss driving - just being able to hop in the car and go somewhere. i am also in the early stages of a little photography project for a friend, but finding the mechanics of it so deeply exhausting. what should have been a half-day shoot is bleeding into the last days of the week. i miss having energy.

  3. Ditto to everyone and may I add "Hurrying" to the list. I was/am a Type A, always dashing about, and often running late but I usually managed to make it on time anyway.

    No more of that! No more arriving at an appointment two minutes before the allotted time. The trek in from the parking lot requires at least ten minutes.

    I could tell you how much better my life is now that I'm not always stressed out and behind. I could mention that arriving 15 or 20 minutes early is a whole new world of comfort, or that I'm a much easier person to be around now that I have some patience and forethought.

    All of that is probably true but I still miss hurrying.
    Thank goodness I can still feel the wind in my face when I'm going 4 mph on my scooter!

  4. Who would have ever thought I'd miss doing laundry, cleaning the house, shoveling snow, mowing the lawn, grocery shopping, etc. etc. etc.??
    But boy do I miss it all.
    Mostly I miss being able to run around and get down on the floor and play with the grandkids.
    And like others said - not even having the energy to do what I'm still able to do.
    Oh yeah, really miss driving, too.
    Sometimes it's hard to make the best of it. Most of the time I just try not to dwell on it.
    Keep on keepin' on!


  5. A great list!
    I miss standing. Standing is a great vantage point for looking around. I miss the energetic feeling of standing up straight, head level, shoulders back, stomach in, just standing. I miss the camaraderie of standing shoulder to shoulder and looking eye to eye.

    Something else I don't miss? Backpacking. Really, putting that heavy pack on took the fun out of the wilderness for me. I was too competitive to admit it.


  6. Muffie, thanks for sharing your list. I really don't spend much time thinking about what I've lost either. I still have so many interests.

    Stephen, yes driving! I definitely should've listed that.I hear you about photography. I'm finding it more and more difficult myself.

    Daphne, excellent item – "hurrying". I was never a type A, but I certainly liked having the ability to hurry when I needed to, and I now realize that I miss it.

    Dee, good list. My kids were too old for wrestling on the floor when I became disabled, and I don't have grandchildren yet, but I can imagine your frustration.

    Anne, thanks for stopping by. Standing, yes! I'm able to approximate standing in my iBot wheelchair, but it's definitely not the same.

  7. Huge Dittos! Thanks to everyone for saying exactly what I feel! Standing and hurrying are definately on my list, along with wearing makeup,jewelry, and shoes. Makeup because by the end of the day, I'd be too tired to take it off; jewelry cuz my hands don't work to put it on; shoes cuz they just fall off.