Don’t Hate Me Because I’m Beautiful

Remember how Vigo the Carpathian died, according to Ray (Dan Aykroyd) in Ghostbusters 2?  Probably not.  I’m pretty sure I was the only one to see that movie.vigonormal

Spoiler alert – He was poisoned, stabbed, shot, hung, stretched, disemboweled, and drawn and quartered.

People made an assumption that he “died of old age” at 105, but that was far from the truth.  How often do you find yourself judging someone based on prior experience or taking the easy route?

I’ve spent the last nine years committing myself to causes and helping others despite my own challenges.  I, for example, do a lot for the National MS Society.  It’s a little like going to the gym.  I know that I’ll be better for it in the long run and I’ve learned how to truly enjoy the process.

I lend a hand (figuratively) to several groups in town, including the MS Support group, the Spinal Cord Injury group, and the alumni board for my masters program.

My real passion is conducting therapeutic drum circles for everyone from seniors in assisted living to children with disabilities.  I stay pretty busy, despite the fact that I don’t work anymore.

So why do I do it?  Surely I could sit back and rot away or enjoy the “easy life.”  I don’t make money doing this stuff – I must be getting something out of it, right?

I can do these things despite my condition.  I’m not the only one in a wheelchair.  It doesn’t matter that my hands don’t work well.  I can pull out my fan whenever I need it.  I don’t need to worry about putting on a hazmat suit or decontaminating my wheelchair.  And, I make my own schedule.

Oh yeah – and I seem to have a good rapport with people of all ages.  You see,

“I’m an ideas man.” – GOB Bluth, Arrested gobDevelopment

But mostly – it’s therapeutic.  I feel good when I do it.

It’s not that I don’t wear myself out – sometimes to the point of collapsing – when I’m trying to stand while packing up my gear.  It has happened, but I look at everything as a learning experience – if I can figure out what will make packing up easier and more sustainable so I can keep doing this for the foreseeable future, I’ll do it.

It can be physically challenging but it’s always socially gratifying.  And it lasts.

I get so much pleasure from enriching the life of someone who needs it or getting through to someone that no one else has been able to, that what happens in the short-term is not remotely significant.  Not only that but I get to enjoy the music and focus on the students in the meantime.  It’s extremely rewarding.

As an example – I was working with a small group of first graders with various disabilities last week.  One of the teachers approached me and whispered that a boy that had responded hasn’t done that with any other male adults at the school.

I will remember THAT more than anything that happened that day.  The good far outweighs the bad.

Is there bad?  Most people wouldn’t think so because I tend not to complain about it.  I might make excuses for my behavior – probably too much – but usually don’t complain.  Why?  Because I serve others, listen to good music, or do other things to change my state of mind before wallowing in self-pity.

I remember a meme that was making the rounds a few years ago of a woman standing on her wheelchair to reach a liquor bottle.  I don’t remember the quote but the idea was that if she can stand on her wheelchair, she must be faking it.

For me, standing is an option and even though it’s hard to do, I continue to force myself to stand so that I don’t deteriorate any faster.  I can tell you that I hadn’t been to the mall or anywhere else that required walking for a few years leading up getting my wheelchair.

Not only that, but just because I make it there under my own power doesn’t mean I’m not ready to pass out.  It’s not always a light switch.

I tend not to make a big deal out of issues that I have because 1) there’s only so much I can do and wishing that it wasn’t the case isn’t going to make it any different.  I just need to keep making adjustments to my lifestyle – my eating habits, my exercise habits, my sleep routine, my stress control, and the experiences that I have.  I need to control the variables.  2) Because bitching about things only makes them worse.  We find what we are looking for – always.  If I’m complaining about my legs, I’ll look for more reasons to complain about them and find I was right when I discover them.  It compounds the problem.  3) I want to set a good example for my kids.Jim receiving donation

So I look at the bright side and enjoy life by spreading the idea of positivity and serving those that need it.  But people still have questions:

Am I in pain?

Almost always.  Not the “stabbing pain” that so many of my friends are burdened with, but more of a chronic achiness in my legs, like I just ran a marathon or climbed 10 flights of stairs with two bags of groceries.  Sometimes it’s so bad that I have a tough time falling asleep and it’s the reason that my feet rarely stop moving.

How’s my coordination?

Well – I haven’t been able to write in years.  I can barely hold the pen for a signature at this point.  As luck would have it, I’m right-handed and my right side is the bad one.  I can’t write, hold food on my fork, or stand on my right leg while I’m getting dressed.

Weirdly, despite the weakness on my right side, my left foot is the numb one – figure that out!

My hands have become so shaky and my balance so bad that I have to have my kids carry any soup, cereal, or drinks to my spot at the table or in front of the TV so that I don’t spill them.

Why do I use a cane or wheelchair?

My legs are heavy – almost like their stuck in quicksand.  This means I tire very fast on the rare occasion that they’re working correctly but that they usually don’t move if I need them to.  Often times, the result is that I fall.  Combined with my stellar balance, this means that even turning around while sitting might end with me kissing the pavement.

Bladder issues?

I had a bladder like a pregnant chipmunk before MS – now it just has a 5-second fuse attached to it.  I tend to dehydrate myself before I go anywhere.  It’s not terribly healthy, but there are worse things.

What’s the worst thing I’ve experienced?

Hands down, the worst part for me was losing my ability to speak clearly.  It sounds odd, but I found out when I originally had major speech problems in 2006 and then again in 2008, that I would happily give up my ability to walk or write before my ability to communicate.

Everyone’s experience is different, though.  I sometimes have trouble swallowing but have found ways to manage it.  THAT could surpass the speech issue if it gets worse, I suppose.

Some people that I know have cognitive issues.  I have certainly been in a fog or gotten stuck, but have, depending on who you ask, been relatively clear-headed thus far.

What other issues do I have?

Heat tolerance.

I’m not talking a Whitney Houston or Meatloaf sweating issue – I’m talking about being shot with a tranquilizer dart.  I often joke that once I start to feel comfortable (temperature-wise), I know I’m in trouble.  For a guy that shivers uncontrollably, it’s no joke.  I HAVE to be cold if I want to be functional.

It’s all manageable.

I know a lot of people that have it worse so I just do what I can to make the lives of others a little better which makes mine better as a result.  A lot better.

Is that selfish?  Maybe – but it’s a passion.

My hope is to show everyone that, no matter what they’re dealing with, you still can make a choice to feel better.  That doesn’t mean great – just better, but it adds up.

I always say that you feel good for a reason!  If something is making you feel better, you’re creating a better environment for your body to recover or heal.  You’re working with your therapies rather than against them!

I’m genuinely good with the way things are.  Let me say that again –

I’m good.

I manage my symptoms (sometimes obsessively) and found a therapy that I truly enjoy.  It’s hard to complain.

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2 thoughts on “Don’t Hate Me Because I’m Beautiful

  1. Loved this! My ‘symptoms’ were all listed…thought you were talking about me! I wish could be as involved and understand your reasons why you are.
    I was before and felt helped for same ressons. But nowadays can’t drive so stuck home. Keep moving! PJ

    • I’m glad you liked it! It definitely wasn’t always this way but I found that when I do it more, I become more sensitive to subtle “wins” and get more out of it. It improves, becomes more energizing, with “practice.” Thanks!

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