Sunday, November 1, 2015

Stealing Back Passions


Multiple sclerosis has a tendency to really, really annoy you. For people who don’t have this disease, this is a difficult concept to fully grasp. The best way I can put it: combine Jar Jar Binks, a shoe freshly stepped in dog doo-doo, Nickelback, reality TV shows, impenetrable battery packaging, potholes, the last episode of Dexter, and trying to find the start of cellophane. That kind of annoying, times, well, a billion. And one of MS’s prime annoyances is its proclivity to steal away passions you enjoy.

I used to be a bike rider, until balance issues knocked me literally off the saddle. So last year I swiped back that passion, purchasing a trike. Once again I was able to hit the trails, finding renewed freedom on three wheels. But then this spring my MS went all Screech on me (i.e, extremely annoying, re: Saved by the Bell), pirating my leg strength. That meant my already short and slow trike rides had to get shorter and slower. When Laura, jogging leisurely, quickly turned into a distant speck while I tried desperately to keep up with her scorching 6 mph pace, I almost cried Uncle. Almost.

While my legs bark at me these days when I do anything remotely taxing—like going to the pantry to grab a bag of Cheetos or to answer the front door (Laura wisely put up a sign that reads, KNOCK LOUDLY AND WAIT A FEW MINUTES, seriously)—my arms thankfully are still mostly cooperative. Yeah, they are numb, my right side can get a bit “heavy,” and coordination is not 100%, but they work infinitely better than the two sticks masquerading as functional legs. Why not a handcycle? I discovered last year I couldmotor on one, and I could pass along my newish trike to Laura so we could actually ride together.

Now I am not going to deceive or kid myself. Having multiple sclerosis means there will always be this tug-of-war, an unwelcome thief trying to swipe joys and a stubborn SOB (uh, me) who doesn’t want to let them go. I have a simple rule: When multiple sclerosis tries to steal your passions, do everything in your power to steal those passions back. I know I won’t pull that flag onto my side every time, and even when I do, it might take on a wholly new form (a handbike rather than a bike-bike). But I have to try. I always have to try.

So this past week I raided my disease’s passion chest, and stole back my passion for riding once again… with a little help from Craigslist (and a good friend with a large minivan). I went farther on my new arm bike than I’ve ridden on any type of cycle in the last six years. And then I did it again two days later. And again today. And I’ll keep doing it again and again as long as I can, sacking as often as possible my multiple sclerosis like the hell-bent marauding plunderer I’ve grown to become.

19 comments:

A Mom's Journey said...

I truly love your determination to say "Screw U MS". And passion to prove your stronger. I too comprehend the challenging fight MS makes us fight. For the last 15v years I've fought this fight, and as of the last 4 years I've fought the fight to drive.
It wasn't until a month and a half ago that I got my car adapted with hand controls that I realized that as long as I have the ability that I too need to steal my passion back.
So every thing I do I too elate over it and find pleasure in overcoming the stolen that MS attempts to do.

Keep fighting the good fight!!!
~Tanya

Dave Bexfield said...

Tanya, good timing. A future blog is about hand controls. I just switched to them this summer and it was so smart! Like you, I waited longer than I should have and fought it. In retrospect, that just meant wasting time fretting. Way to go!

Rebecca Thomas said...

Your blogs are great! Love the wit and love the messages. Thank you. I'm leaving work the day after tomorrow because my role was made redundant and am planning to set up my own business. 'Bloody scary', as we'd say here in the UK, so very good to read a blog about stealing back the passion - that's what I want to do. I'm thinking of getting an electric bike - I'm still able to cycle but live at the top of a hill which is too much work in itself, so I don't do it. Rebecca :)

Anonymous said...

Thank you Dave! I needed to hear this today. My MS is BS shirt needs a companion. I will keep stealing back my passions and keep adjusting

Dave Bexfield said...

Thanks Rebecca, Anon! Our hills might be tougher to summit than others, but we have to try.

Marina said...

Love that you found something that works better for you and even better that Laura has a trike now and you can ride together :) You have such a fantastic attitude, I admire it quite a bit, one day I hope to be like that!

Dave Bexfield said...

Oh, I know you well enough, Marina. You are like that!

My Odd Sock said...

Oh, I hear it now. Pretty soon you are gonna be bragging about how big your guns are getting from using your arm bike. "Laura, I need shirts with bigger sleeves!"
You'll look like a WWE wrestler---all arms-no legs!

Congrats on your bike! I've always wanted a racing wheelchair, but they are so darn expensive.
I too love my hand controls. Had them since '07. They make you a better driver as well because you can't drink, eat, text, talk, pick or scratch--you just drive!

Best regards!

Dave Bexfield said...

MOS, I've already started to rip my sleeves in preparation for my very, very large muscles. Laura: Why are all your shirts torn? Me: Cause I'm getting ripped! Laura: Yes, you know how to let 'er rip. Sigh.

As for driving, a noise itch is the worst!

Matt Allen G said...

I just want to say... The last episode of Dexter STILL bugs me, best show ever though. Haha anyways, I am right in the middle of trying to find a way to get some of my passions back from MS but it is ANNOYING (well, frustrating) because every idea I come up with just does not do it for me... But I am too young to "give up", as tired of the fight as I may be, I know I have to keep pushing and it has become painfully obvious that trying to live without my passions? It has messed me up. BTW, I want a trike so bad haha... $$$$$$$

Dave Bexfield said...

Annoying is putting it mildly! Keep pushing my friend, you'll get there. When you are in ABQ, feel free to stop by and try my trike. Affordable ones (used) do exist...

Anonymous said...

Absolutely needed this blog this morning! Everything happens in perfect time! Heading out this afternoon to size up the Treking Poles......no more waiting! Thanks Dave!

Dave Bexfield said...

Anon, you'll find they make a tremendous difference. Just be patient and use them properly.

Matt Allen G said...

Haha I know, as someone with a relatively vast vocabulary I can honestly say there are not always words to describe MS so we have to settle haha

Dave Bexfield said...

You usually are pretty eloquent with your MS vocabulary, Matt. For those uninformed, check out Matt's outstanding and insightful work here: http://www.mattsms.com/

WJ Hartvikson said...

What kind of trike did you get? I'm currently looking, and will likely get 'electrics' added for those times when the legs can't peddle any further

Dave Bexfield said...

This is an arm trike, WJ. Note that while electrics are nice, it adds significant cost and weight (transport can be challenging).

A Mom's Journey said...

Dave you r a true warrior!!!

Dave Bexfield said...

I try, AMJ! Thanks.