Thursday, March 12, 2009

Carnival of MS Bloggers #31 - Beauty and Inspiration

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Beauty, Inspiration, Honesty

The Wheelchair Kamikaze shares  

No, not photos of wheelchairs, but photos taken from a wheelchair. The camera I use to do the Wheelchair Kamikaze videos is actually a still digital camera that also happens to shoot halfway decent video, and I do a lot of still photography using the same camera/tripod rig.
I was an avid amateur photographer before I got hit with MS, and had to put photography aside for about five years because of the disabilities brought on by the disease. Funny thing is, while I tried my damnedest to stay out of a wheelchair, using all manner of braces and canes, I was physically unable to operate a camera. Once I finally agreed to get the wheelchair, I was able to once again pursue my photography passion. Since I got a camera with a flip out view screen and a flexible tripod as gifts this past Christmas, I've been able to start shooting again. I think there might be a little lesson in there for us all...
And that lesson is, of course, to always ask for really good stuff for Christmas...
Here are a few of the photos I've recently taken. Click on the thumbnails for a larger view...

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Mary lives with MS, works as a nurse, has started a travel blog, and writes beautiful poetry. Here is one I believe we all can relate to, found at Dealing with Human Pain by Travelogue.
After Awhile (first draft) by Mary E. Gerdt

After Awhile

After Awhile,
Things will be better,

Time will have passed,
Regrets will have faded,

Sorrows will dry after
The crying,

You will feel better,
Not like your dying.

After while,
When your back home

And safe in your place
Where you can roam,

And be one with nature,
Feel carefree again,

After awhile,
When we are older,

And we are settled,
And we are bolder,

We’ll reach for the sky,
Like we did before,

We’ll lose all our fear,
That closes the door.

After awhile,
The sorrow will fade,

That tugs at our heart strings,
That God alone made,

To keep us as humans, not a machine,
Who is hurt by a word, or an unkind deed.

Who heals when times get better and then,
Who bleeds and cries when losing a friend.

No mechanical device, we are flesh and blood,
And tears that we cry,
Rain down from above,
And fall from our faces down to the ground,
And wash off the fairies who watch us and frown,
Sad at all of our earthly emotions,
They stay close at hand when you’re feeling so lonely.

Never think you are alone in the middle of the night,
Or think your small world is causing a fright,
Open up and see the rest of the world
Is on your doorstep and ready to right,

All the bad ills and bad feelings you have,
May you see a world not so bad.
When you are feeling fear and evil intentions,
Look at a flower and its simple invention,

It is not so simple after all,
The flower can lift spirits after a fall,
The scent takes us to places long gone,
With the passing of time,
After while,
Sorrow will be done.

Lori shares some Fast Fun Facts about MS 
at 12 December 2008 - Saying It Out Loud.

Two out of three people with MS are women.

Your odds of getting MS increase by four times just by virtue of being born north of the 40th parallel. Canada has one of the highest rates of MS in the world.

According to 2007 research, only 24% of people with MS are wheelchair bound, and usually 15 to 20 years past diagnosis.

I have been told that finding comfort in the statistics about my condition is a tad odd, but I do.

As most people don't get MS, I've already beaten the odds. So, the likelihood that I will get the worst and most severe forms of the disease are even less. I'm also really fortunate that I'm under 40, living in a country with socialized medicine and great amounts of research dollars, in a province with Pharmacare, in a city with one of the best MS clinics in North America, and can survive on federal income supports until I can find a new job later this year. I shudder to think what our lives would be like if we were living in the US with Joe full time in school and me getting forced out of a job with no insurance benefits.

Seriously, think about that. Our lives would completely suck in so many ways I haven't even been able to fully imagine how much that would suck.

Don't get me wrong, my life is sucking pretty hard right now, but I think that we've plumbed the depths of that suckage. Unless something goes radically wrong before June I think we've seen the worst of the disease for the next five years or more.

I am fortunate to be diagnosed in 2008. If I were diagnosed even in the year 2000 I would not have the opportunity to get the drug I am currently on. I've been reading some phase 3 drug trial information and there should be oral medications that work better than the injection drugs we have now available mass market before I turn 40. There's a lot of holistic research being done in BC regarding exercise, fatigue relief, cannabis, nutrition and the like. In May I find out if I can be considered for some of those research projects.

I've decided that if they can't find a cure in my lifetime I want to be a part of trying to find one for the next generation. I want a cure, and barring that I want a treatment that's like the insulin for MS. I want to be able to manage this, and I guess that's going to be a process.

The social worker at the MS clinic gave me a nutrition article telling me to eat lots of antioxidants, omega 3 fatty acids and drink a glass of syrah, cabernet sauvignon or pinot noir a day.

As someone who loves bright fruit and berries, sushi and avocados, and red wine... eating for my health is going to be a real pain in the butt. ;)

I'm not really good at looking on the bright side of things, but I'm pretty good in a crisis. I'm not interested in becoming a motivational speaker or lying to people about what I'm really going through. I've always said that I am a realist not an optimist. I'm not supremely confident in my ability to want to live. That's the biggest one. I'm trying, but finding the will to live and actually do something with my life seems unlikely.

I'm not noble and things less than MS have destroyed my life to the point where no matter what I do my life will never recover. I have been brought to my knees by things far less than this disease and spent years in the abyss of depression, self-destruction and poverty.

Many people told me that the first year after diagnosis is really difficult but once you find your "new normal" you learn to deal better. That's probably true.

A year can change so many things.

This concludes the 31st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 26, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 24, 2009.

Thank you.
Comments for this post.


  1. Another great Carnival...The Wheelchair Kamikaze's photos are outstanding.


  2. Oooh... Incredible shots. Love 'em all, but the arch path is my favourite. Gorgeous!

    May I opine for a moment, even though I'm a brand new commenter? I use a wheelchair, I am not wheelchair bound (or confined by a wheelchair). My chair liberates me - without it, I'd be stuck in bed. I get twitchy about language, especially the language able-bodied people try to impose on a situation they find horrifying. Which isn't so much, because hey, you get to take pictures. And go places. And drive over the feet of people who pity you (oops, did I say that out loud? ;)).

  3. Lene, all commenters are welcome to opine (except for the spammers, they get deleted). :)

    It seems to be a common perception for folks who are knew to mobility issues that using a wheelchair is equated to "giving in." I haven't needed a chair yet, so just going by what I've read and been told.

    But the amazing thing is that once a wheelchair is USED as a tool, it opens up a whole new world of possibilities. Mobility is a wonderful thing and wheelchairs make more people mobile.

    You really should check out this video the "Kamikaze" posted recently. It records his 5 minute commute from apartment to doctor's office building. Simply excellent.

  4. Jen, thanks.

    Between Marc (kamikaze) and Stephen (one life), I've got a satisfying collection of photography to view, me thinks. Now, if only Chrysalis (formerly Ammey) starts posting her photography again, I'll be made triple-y happy.

  5. Wow! This is a great carnival! I loved the poem and I also enjoy the statistics that give me a measure of hope, too. Gotta find inspiration somewhere.

  6. hi Lisa-

    I go to neurofeedback in DC, near Bethesda. It helps with my memory/cognitive fog issues. Also with energy.

    My PT has really helped with balance and neuro re ed- I can make my left leg follow commands better despite decreased sensation.

    Happy Friday!