Powerful Story of Survival: Thirty-one Years and Still Standing

For those of you who don't know Michael Schwass, in whose honor I am lauched the first edition of the Carnival of Courage, allow me to introduce you.

He's a member of the National Speakers Association, a therapist, a coach,  an author... and quadriplegic. The first quadriplegic ever to walk again without the aid of braces. I encourage you to read his compelling autobiography, Don't Blame the Game , for details of his personal journey. I met Michael sixteen years ago when he spoke at a group I was leading on the spinal cord unit of at Marianjoy Rehabilitation Hospital in Wheaton, IL, during my doctoral internship in counseling psychology and we became fast friends.

Michael was a star hockey player injured in a high school playoff game 31 years ago, later watching his team go on to win the Illinois State Championship. He never stopped being an athlete, though and his grueling daily exercise routine has been critical to keeping him functioning at his absolute maximum.  While he is no longer able to walk, he is still able to stand, a miracle I witnessed myself this past June. 

Despite his phenomenal strength of spirit, the long term physical effects of quadriplegia are devastating.  In 1997 he survived a staph infection such as took Christopher Reeve several years ago. I've known him to be very close to death three different times since I have known him. And maybe there were more times than that which he forgot to let me know about...he's cagey that way. He's had many surgeries (20 something?), including a life saving surgery in Ecuador a few years ago in which nerves were harvested from his legs to rebuild part of his spinal cord.

The aging process is sped up to double time in quadriplegia and over the years, I've seen the change in him, though remarkably I'm the one with the most gray hair.  I've seen him transition from a manual to an electric wheelchair. He's not as strong and independent as he was when we first met although his wit has sharpened to compensate for this.  Contrary to common belief, quadriplegics may still experience physical sensations below the level of their injury and certainly can experience high levels of pain. With arthritic changes, stresses on various bodily systems and our famous Chicago winters, Michael is no stranger to "discomfort" though I have yet to see him let that spill out in negativity directed toward others.  He is one of the most gracious and disciplined people I know.

If you were to have the pleasure of meeting him, you would experience a vibrant, wonderful, sweet and funny man. Very spiritual with a Buddha smile. You can forget, if you want to, that this is a man who has to pay attention to every little detail to keep that bod running. He has to put up with a lot of missteps by the rest of us and he does this with a grace that humbles me. Like the time I spilled tea on him when I had the slightest lapse of attention while holding the mug for him to sip from. Or the wacky time I almost flipped his chair in the van taking a turn too fast. Oh, how we laughed about that one!

For me, Michael is a confidante, a true friend.  He feels like a childhood friend even though we were adults when we met. We're a couple of old river rats who have done away with pretense long ago as you can see from this scraggly picture. Maybe you have someone like that. I hope you have someone like that. Someone that really sees you right through all your neuroses, or masks, or ups and downs and highs and lows. Your years of being in your game and those chapters that you'd rather forget and loving you just the same either way.

My husband is like that for me. And so is Michael. And, I know that Michael doesn't have the expected life span that I do. He's my peer but he won't get old with me.

Now, he could be here three more years, or five, or longer. But I can tell by the way he looks at me when I say "five" with that neutral look directly into my eye that says "be here now", that patient look that somehow tells me that five is maybe too big a number that I have to be ready.

A few of you saw me through a lot of kicking, screaming, sobbing and general existential melt down a couple years ago when this started to really get into my consciousness.  Michael worked very hard with me and I worked even harder on myself to get ready. I'm not saying I won't grieve the hell out of him when he goes.  But I am saying that I see him with very clear eyes and know today what a  gift I have in our friendship and how blessed I have been to have these sixteen years. I can sit now, on his gravesite and feel calm.  I know he has suffered tremendously in his life in ways that you and I could never conceive of. He was given one hell of a hand and he's played it marvelously.  When the game is finally over for him, how could I be anything but proud and grateful?

On this, the eve of the 31st anniversary of his injury, I am humbled and struggling for the words to express what his life has meant to me.  He has given me gifts that would cause most of us to shudder. He gave me the gift of recognizing mortality and of recognizing that time is finite.  He made death real to me. He taught me about love and friendship in a way that precious few men and women are able to grasp. It's been an amazing paradox to come to terms with, loving someone who is both vitally alive but that I could lose at any time. 

It's a fierce love.

We are all ephemeral and all our stuff means nothing in the end.  Love is all that matters, truly. This is the undercurrent that is running through my life, the awareness that life is so temporary and so precious. I hope as I share my continued learnings guided in part by Michael's wisdom and influence that you will feel free to share yours as well. That's why I set up the carnival.  I could think of no better way to honor Michael's influence in my life than to invite you to share your sources of inspiration as well, creating a vortex of strength here that any of us can draw on at any time.

I love you, Michael. 

Thanks for making it through that first night.

In other news, Michael's wry sense of humor and ability to laugh in the face of adversity never ceases to amaze me. When his van died this weekend, in the middle of our blizzard, he left me a message that was more laughter than words.  "You can't fight the Universe!' and then laughing and "serpentine belt went just as we were getting to the highway" and more laughter and finally, "I'm going to go pray now" and more laughter.

Since this article was first posted, Michael's challenges have continued to grow, as has his strength of spirit. The van was eventually fixed after spending several thousand dollars and he currently has had over a $1000 worth of repairs on his wheelchair and more coming.  While Michael is dedicated to being self-supporting through his work as a life coach, therapist and speaker his medical regimen is so time consuming that his work hours are more limited than an able-bodied person's would be.  As his medical costs continue to sky rocket, along with the costs of maintaining a staff of seven people to assist him in his work and daily function, I have set up a donation link for those people who have been touched and inspired by his story and wish to help keep him rolling. 

To leave a donation via PayPal, MasterCard, or VISA, please click here. ***PLEASE NOTE: The link will take you to a form formatted by TypePad that I can't modify so it will say you are leaving a tip for me.  While the money will be transfered to my tip account via TypePad, rest assured that every last penny will go directly to Michael.

To send a donation via check, money order, or cash, please send me an e-mail and I will provide  you with my mailing address.

Thank you for your support!

Seeking more inspiration? I also recommend you visit the Carnival of Hope.

Sports fans looking for more good reads, check out this and other posts at The Carnival of Sports.

Comments

[Connie Kuusisto]

Thank you for sharing this post with us for use in the upcoming Disability Blog Carnival #5. It's a pleasure to meet you - and Michael - online.

Join us on the 14th at www.planet-of-the-blind.com where we'll host a number of other bloggers writing about traveling with a disability.

See you there!

[Laura Young]

Thanks Connie, I'm looking forward to seeing your carnival. Glad I was able to share Michael's story with you. He's quite a remarkable man.

[Linda Freedman]

Inspirational isn't the word. No, it really is. What a fabulous story. Thanks, Linda

[Laura Young]

Thank you, Linda. He really is a remarkable man. It's my great pleasure to introduce you.

[Heather]

This is such a wonderful and inspiring story. Thank you for sharing it, and all the best to Michael.

[:: Suzanne ::]

I take it that his injury was not complete if he was able to walk again? Is he walking now? I'm confused about the 'walking' talk and the mention of wheelchairs.

My Dad is a T4 complete para at age 72. His injury was 9 months ago tomorrow.