Caregivers of the world, unite
by Janine Lodato
Biologically, I am the third of four children born to my parents in the 1940's. My older brother was born in 1942, my older sister was born in 1946, I came along in 1948, and my younger brother was born in 1950. We are two girls and two boys, baby-boomers most of us. I see my siblings only occasionally because they all have built their own lives with their own children.
I am the only one who never had children. I am the only one whose hair is still dark. I am the only one with Multiple Sclerosis (MS). I think I am the only woman who looks forward to the future because of stem cell research. Yes, I had boyfriends in high school and graduate school, but I grew up in the 60's when guys didn't ask girls for marriage. No one I cared about ever asked me to marry him and share life with him. It was just a difficult time of life. The husband I have now I married later in life.
Now, I have a close friend and her husband from Germany who came to help me in my convalescence. She is my sister-in-care. He is a brother-in-repair because we have so many problems with our house, he can help us repair those problems. My girlfriend has been here for almost two months by herself. She has been helping me and my husband in this time of trial with my MS. Her husband just joined her, and they will do some visiting and traveling in America since the exchange rate for Euros is in their favor.
My biological sister had worked for American Airlines and was able to get them travel passes from Germany to San Francisco. So, their sacrifice has been in time more than in money. As a quadriplegic whose motor skills are pretty much shot, but whose mental skills are not, I can offer her good companionship and a certificate in care giving for both me and my husband, who had a lot of buttons to sew onto his shirts an shorts.
Considering everything I am the luckiest person on the face of the earth, as Lou Gehrig has said, a fellow autoimmune sufferer. Having fought off a 31 year assault of MS on my body, there are some things I can still do. Primary among those is that I can still see, still hear, still smell, still talk, still taste food, still feel a touch.
I have also found that there is good news regarding my condition, that being that I am not blind, not brain-dead, not boring, not betrayed, and not broke.
Research has found that 80% of people in my position suffer from 'spouse desertion'. I don't fit into this arge segment; my husband is staying with me 24/7. He can do this because he can do his work on the Internet.
If many of the spouses would be given the opportunity to tele-work then they would not betray their partners with a disability. The government should encourage the employers to allow workers who have a spouse with a disability to perform tele-work style.
The mind is a powerful tool. When the body flakes out, the mind can take over for the body's shortcomings and my time with useful and enjoyable tasks. Rather than going to an exercise gym the mind can connect to a 'brain gym' via the Internet.
So the Library of Congress and the Government could provide the Internet as a free service to the people with disabilities.
The Government and the medical establishment should put together a data base of care givers and the people with a disability who need care givers, so they can match up according to needs and availability.
While I have always appreciated having three other biological siblings, I also very much appreciate my new selective siblings. One never has too much of a good thing.
Published: May 2006
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