Tuesday, March 15, 2016

View from the wife: what it's like being married to me

Déjà Vu: This column was originally published in the March 25, 1991 Journal-News edition, a newspaper distributed in Rockland County, New York, 

I'm re-publishing this column as part of my online blog. I still believe the message is appropriate today and is an example of the activities many of us with disabilities can enjoy in the United States, and perhaps around the world. Photos may be added to this posting from my collection or the web.

Some of the organization names may have changed or no longer exist in New York State as of this writing.  I hope you find this column helpful and informative.

I've received a number of letters from readers asking how to be in a relationship with a disabled person. My wife, Maggie, and I have discussed these letters. After one such discussion, she decided to write an essay describing what it was like being married to me. The essay touched me and I wanted to share it. So Maggie gave me permission to submit it as this week’s column.

                                           ***

My husband has been a quadriplegic, paralyzed in all four limbs, for 10 years. We dated for two years and have been married for almost three.

While we were dating, family members and friends would ask questions, such as, “Why are you always with that guy?” and “What can he, a person paralyzed and in a wheelchair, offer you?”

At the time I couldn’t give them specific answers because I really didn't know myself. What I did know was that when Jim and I were together, we had fun and could talk about everything. He became my best friend.

I first met Jim at work [at IBM]. And occasionally we’d eat lunch together. Thoughts of those times remain etched in my mind. We went to the company cafeteria and walked by the piercing stares of strangers, which made me feel like a freak.

I’d usually pick up two plastic lunch trays and ask Jim what he wanted to eat. Once I cut his food, I sat down for what I knew would be an enjoyable meal, despite the constant staring.

During the two years we dated, Jim explained and showed me the obstacles and problems that come with being a quadriplegic. When our relationship became more serious, we talked about marriage. During those talks, Jim would ask me questions such as, “How do you feel about helping me in the bathroom?” Do you think you could help me to bed every night?” “How do you know you won't get tired of these routines?”

So, by the time we were married, I was aware of many of the procedures involved with caring for a disabled person. 


But even taking partial responsibility for his personal care was scary in the beginning of our marriage. In fact, I used to wonder if I’d be strong enough to handle all the physical aspects of being married to a paralyzed person.

Although we hire nurses to help us in the morning, I asked Jim to let me do his evening routines. But it hasn't been easy – – filling in when the nurses don't show up, making sure he's positioned properly at night, cleaning him and his urinary supplies, or just helping him out with minor things.

I'm also responsible for all physical aspects of our daily lives. For example, I take out the garbage, and learned to
repair door hinges and wheelchairs. These are

accomplishments for me because I couldn’t use a screwdriver before I married Jim – – I didn't have to.

But I have to say this: Jim is worth every ounce of my time and energy. If I had the chance to marry him again, I would.

My feelings for him are not based on sympathy, but on love and dedication. During our five years together, we've developed a wonderful relationship. He's added so much to my life in this short time – – his ability to give, love, share, laugh and forgive, and his “don't give up” attitude.

I realize now how the tables have turned. I depend on him. When things are tough, I turn to Jim for his upbeat words of praise. He seems to have this very normal sense about life within his “abnormal” body.

After seeing what he has been through and how well he copes, I've gotten a new perspective on life. The problems that most couples fight about seem almost trivial or

insignificant to me. Sure, we fight hard, but we love hard too.
This type of relationship isn't for everyone, and we work very hard at maintaining ours. The result is mutual respect and appreciation for each other.

I’ve found my knight in shining armor, wheelchair and all.

                                               ###

I. Maggie and I are in the 28th year of our marriage.

II. For those who read my last blog, "Wheelchairs: A Job Lifeline for Disabled Consumers and Workers," my wheelchair was finally repaired.

Pages