Reeve Foundation Paralysis Community

About 10 years after my accident which was in 1979, I happened to be seeing two couples whose husbands had recently become C5 quadriplegics (same as me). Same disability same implications and same wheelchair.

One couple was in their early 20s and had been married one year. He was in the police Academy and had his accident riding his motorcycle one weekend. No surprise that this was a catastrophe. She didn't bargain for this, he didn't have coping skills and to them the wheelchair meant the end of everything. Their marriage broke up within six months.

The other couple were in their 60s and had been married close to 40 years. He was near retirement as a truck driver for a construction company when his truck rolled down the hill and he broke his neck. When I saw the couple for the first time, they were fairly lighthearted and even playful. They wanted to know the mechanics of having sex again she wanted to know if the would be okay to leave him for a couple of hours while she went shopping. Therapy lasted only a few sessions and they were fine. To them, a wheelchair meant an inconvenience but the fundamentals of their lives were unchanged.

When I first had my accident, my wheelchair meant I would be living with something horrible for the rest of my life. Years later, I was bedridden with the decubitus for over a year. When I got back in my wheelchair, it represented freedom and I was thrilled to be back in the chair. And now? I honestly don't know. Don't think about it much.

So here's my question. If the stainless steel is just stainless steel, then what is it that causes our suffering?

 

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"will be released April 2010

Ok, I’ll bite; here’s how it feels to me:  It’s not the wheelchair at all.  It’s the loss of a dream and the loss of how we thought happily ever after would turn out that causes the suffering.

 

I personally don’t think all SCIs are created equal.  Of course it is a devastating injury no matter what, but some injury levels impact the mechanics of marriage more than others.  Plus, I think your stage of marriage plays a role.  I can’t pretend to know how others feel or cope, so I’ll speak for my situation.

 

I think several things factor into the suffering I feel.  My husband’s C3-C4 injury makes him 100% dependant.  He can’t drive, can’t feed himself, shave himself, shower himself, brush his own teeth, any ADL, he can’t do.  His TBI causes him to have short term memory loss, trouble communicating and finding the proper words to use, and manifests itself in a severe lack of motivation and an altered personality from the guy I married.  Our marriage will never be what it was originally.  The entire responsibilities in our marriage have shifted.  I am the only one that can work now, so the financial burden rests with me.  I take on nearly 100% of the responsibilities of the kids and the household duties.  Plus there is the added responsibility of caring for and being in charge of the care of my husband.  Our original marriage dream has died and that causes a tremendous grief which leads to the suffering we both feel.  It's not the chair, it's the death of a dream. 

 

Maybe without the TBI the suffering would be less.  Maybe without the responsibility of young children, the marriage would be easier.  Maybe if he was a C6, things would be easier.  I don’t know for sure.  All I know is that our current set of circumstances have left us redefining our lives and our roles.

 

You may be wondering what keeps us together.  It’s our history, our children, the desire to remain a family and the fact that you have to sort of be in love with his soul not just the person.  My husband is different now, but I still love his soul and his essence.  It’s like that song, I can’t un-love him, or un-feel his touch, or un-remember the way it used to be, so amidst the suffering, we try to find a way to redefine our marriage so hopefully the suffering will ease with time.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

My chair and I have a love hate relationship. Every morning when I wake up and see it I hate it but I am thankful I don't have to drag around on the floor.

It's not the chair that gets me it's the feeling of insignificance I feel at times. Going somewhere to have a good time and being unable to get in or participate simply because someone didn't think of someone like me. That my city built a brand new football field and then didn't put a ramp so that when my child gets hurt on the field I can get to him. Nor did they put a place where I can watch with an unobstructed view. Being told at the amusement park that I can't ride even though I know I will be safe. Then they tell my son he can not ride without an adult. It's being overlooked for jobs I am capable of and having people be in awe that I can do normal things like drive or live alone. Why are people shocked I drive but not shocked I can't get in the building.

I am independent and I am thankful for that but there are days I feel I have to fight for everything. From a parking spot to respect from my children's teacher and the ability to just be and go about my life without a big deal or struggle. I would like to just cross the street without feeling like every car is staring and thinking watch out for the girl in the chair. People don't freak out like that when someone walks across the street. And if they are going to freak out could they at least notice that the curb cuts in this town are wrong?

Yes, I have had one of those days.

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I just came back from yesterday.

Dan Gottlieb:

Years later, I was bedridden with the decubitus for over a year. When I got back in my wheelchair, it represented freedom and I was thrilled to be back in the chair.

After being stuck in bed off and on for very long periods for most of the past 18 months or so I have to agree that I felt the same. Although it was a thrilled-hate mix if that makes any sense. I actually felt very conflicted about it. I was happy to be up and mobile again. And then angry at myself for ascribing any kind of positive emotion towards my chair.

 

Dan Gottlieb:

So here's my question. If the stainless steel is just stainless steel, then what is it that causes our suffering?

Speaking just for myself I think it boils down to the fact the chair makes me feel like much less of a person. Like I am defective, worthy of scorn, useless. I could go on and on with that list but you get the point.

 

When I am in bed and I look at my chair sitting there it is like an enemy taunting or mocking me. Sneering at me, reminding me what I can't do anymore. It also is a constant reminder of my dependency. Having a C2 injury my dependence is pretty much total so waking up in the morning and seeing it next to my bed, often the first thing I focus on, can be painful.  It is paradoxical because without the chair I would be even more dependent than I am. The chair gives me one of my few opportunities to do things for myself, even if it's just going down the block to the coffee shop or going from my bedroom to the living room to watch TV. Or go to a store and pick out something I want. But that is a cold comfort.

 

I can remember the day it arrived. This was my first chair other than hospital and loaner ones I had been propped up in. I took one look and asked that it be taken away. I was repulsed by it. My mom tried her best by commenting on how pretty the paint job was which just made things worse although looking back I know it was just her way of trying to cope because I think she was probably almost as hard hit emotionally by seeing it for the first time and what it meant as I was.

 

But I guess I have tried to make peace with my  chair.  I don't know that I have any choice if I am going to be able to move forward with my life.

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"Don't be silly, Toto. Scarecrows don't talk. "