What Would You Think If I Sang Out Of Tune?

It's not easy to think of things to write about. Frankly, I dread opening my blogging program for concern that I have wrote my last and I am all out of good ideas. I am probably delusional because in reality I often feel I haven't even scratched the surface of life with Spinal Cord Injury. Then I get an idea...

I am 37-years old. I was injured when I was 16. I was 4 months away from my 17th birthday. I had a job, a drivers' license, hell... I had even flown on a plane all by myself for the first time three weeks prior to my accident. I was just getting a taste of adult independence. Since my return from the hospital I have lived entirely with my family. I cannot be alone for more than three to four hours. I have a revolving door of personal care aides both paid and family to help me 24 hours a day. I require assistance with everything from bathing to dressing to cooking to using the bathroom to even rolling myself over in bed... and that's the short list. It sometimes requires two people to help me do something simple like get from the bed to the chair.

Family is devoted. Finding outside help that is reliable, well, I've fired over twenty-five people in seven years. So getting by with a little help from my friends is not always the easiest thing. The help I do have has been amazing and it is for you guys I write. Very little is said about care giving so this one is for you guys.

Imagine for a minute what it would be like if you couldn't use your thumbs, just your thumbs. Think about all the things you do every single day that requires thumbs. Now imagine your fingers.You can't move them either. How would you brush your teeth? Wait... break it down... how would you just put the toothpaste on the brush? How would you eat? Screw that... how would you even open the refrigerator door? Let's really think here. Just imagine a beautiful, warm summer day. You are sitting outside enjoying the fresh air after a long and brutal winter and as you happen to look down you notice a small, black spider making its way up your leg and disappearing into your shorts. No amount of stomping, shouting, swatting or wiggling can help you now as you can only pray that little F@!cker is 1. not poisonous, and 2. making his way towards daylight somewhere else on your person. Oh yeah, it's happened. It can make you feel completely vulnerable and powerless pretty quick... and that was just your hands. We haven't talked about everything from the chest down.

This is why everyday for almost 21 years someone very committed has not only gone about their own daily routine, but also mine as my hands, arms and legs. My brother Ethan and my Mother have been the primary sources of help, but you can add my Dad, my older brother, various friends and extended family members and five paid companions I trust.

It is by no means a glamorous job. There is rarely a set schedule. It can be as simple as handing you the TV remote to as complex as cleaning you up after you ate bad food. Think it's easy? Just when you've finally sat down or fallen asleep you are needed... again. You have to lift, shift, tug, pull, push, tuck, zip, button, scratch, clip, cut, crack, open, close, cook, wash, dry, spread, wipe, clean, brush, smooth, poke, stab, salt, season, hold and fold 24/7 and then some. You forget, you get tired. You get frustrated. You laugh. You cry. You roll your eyes... all the while being the closest friend under heaven and the one thing standing between me and the nursing home, or worse. I snicker a little to myself when people ask my brother what he does for a living and then say, "Oh, that's so nice!" with that oh-that's-not-a-real-job look on their face. They do not realize the President gets more time off then he does. Every stay-at-home mom in America knows what I'm talking about.

My paid aides have braved ice storms, worked sick, showed up on late notice climbing out of their own bed after settling in for the night, sat up with me all hours while I recovered from respiratory infections and much more. It is humbling really. I am alive and healthy because of these people and it amazes me how lucky I truly am.

In a time when doctors and medical management make the big bucks, the reality of it all is that it is those by our sides keep us healthy, motivated and alive. So to all the mothers, fathers, brothers, sisters, wives, girlfriends, boyfriends, husbands, friends and aides who have never left our sides... we love you. I love you. Thank you for your devotion, your attention to detail, your heart and all the little things that bring us one step closer to a cure, to walking again and one day returning the favor even when we know there is no way we can ever repay you.

Thanks for reading.

Comments

  1. Another great read!

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  2. I am weeping as i read this. That you have had to live with this circumstance for so long and have faced it with such grace, insight and humor. That your family and circle provide such loving care. It makes my heart well and break all at once. I am so glad we have gotten to know each other...even from such a distance. Know I will never stop trying to find ways to ease the pain, distress and hardship for you and my boy and the others who live with paralysis. Thanks to your circle. Thanks for your words.

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