Thanks to the one who shows us the way

My old friend, Bob Peters, one of the most active and humble man in the disability community developed a deep, terrible infection in a bed sore.  The multiple award winning activist lives with passion, dignity, bravery and class. His time spent prone was dedicated to writing, organizing, and inspiring others.   

He wrote to me today and he’s on the mend. Here is part of my e-mail reply.

 

Bob,

You are amazing! You are one of my heroes, someone with true vision and deep, strength and faith. If you can make it, so can I.

My MS has turned from relapsing/remitting to full progressive, so I’m in my own wheelchair now, the “Black Flash!” Both eyes are gone so I have the new software to continue writing my articles.

I lost a year when my angel, Melanie, was put on the wrong antidepressants and made a very serious attempt to end her life. It was maybe the hardest and loneliest time of my life, catching rides with her mom to go see her, literally crawling blind and unable to walk through our apartment.   

After six months of no housework, things were getting pretty ugly in the apartment. One day in a burst of energy, I tried to clean the house, busy little beaver that I am when I get those bursts of strength. You try to do all the things you couldn’t do in the last two weeks, and end up putting yourself back in bed for the next three.   

Deciding to start with the glass: Why would a blind man take it into his head to clean all the GLASS in the place? Habits and patterns change glacially slow. I guess Patsy Cline and Willy Nelson wrote my theme song, “Crazy.”   

I found a spray bottle under the sink that I was sure was glass cleaner and went to town. I did a great job, considering I could barely even FIND the glass! “You missed a spot,” my cats told me.   

And as I cleaned, whistling a little tune as “Snow White” taught me. As I cleaned I noticed that the room was taking on a new fresh scent, as an extra bonus. Was I proud of myself. Turns out I had not chosen wisely, and instead of glass cleaner, I had been using a homemade concoction of vodka and essential oils that Melanie used as air freshener.   

But returning to my story, I fought a colon tumor last winter that almost took my life after totally blocking everything up. Seven months of torture, while the insurance companies, hospitals, clinics all arguing. Living with these “character builders” has taught me a lesson in sociology: The worst crime you can commit in America, home of the brave, is to be sick and poor, or with no insurance. With the help from literally hundreds of friends, helping me with prayers, cards, e-mails and money, I was able to have a series of operations, and I’m still dancing!

The muscles that control my swallowing and vocal cords are becoming paralyzed. So the decade when Melanie and I spent 200 days a year doing speaking engagements is fading fast. I will miss it. One time I had to do six speaking engagements in Bemidji, finishing at 10 p.m. Melanie drove us to northeast Michigan, singing the Melissa Ethridge sang: “Baby, you can sleep while I drive,” so I could keynote a conference at 9 a.m.

So, like you Bob, I’m turning more and more of my time to writing.   

Bob, do you see how many ways you inspire me? How your life and sufferings were not in vain? How you were terribly injured in your youth, and were deprived of so many things. But it didn’t stop you, or embitter you, or make you hard and cold as my wounds did to me. You embraced life even stronger, with a wife, family, friends, a cause to live, fight and die for. You make me believe I was also put on this earth for something, not just to spend my life in institutions? 

There are more adventures, more victories, more love and battles and defeats to come, and the road is still out there but I’m traveling on a different path. The MS and depression are brutal but subtle. I’m trying to work on my inner self, to open doors that I’ve worked on over the years, blowing out the cobwebs, letting in new, fresh in.           

Bob, again you’ve shown me the way. That no matter what happens to this body, this mere flesh, my spirit, my soul will forever be my own. As I told my depression and MS this morning in the hour-long ritual of awaking, finding what still works, and then getting out of bed, telling them the same thing I’ve told all my enemies, unhearing institutions, hardened institutions of authority, collection agencies, cold medical professionals, compromise, appearance, greed: “Take what you want, Man; You will cause you have. But don’t come shufflin’ after my soul.”

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