February 18, 2002
Living with MS: It's not an option, and it can be HELL!
by William L. "Bill" Brayer
There are many people today living and coping with the physical, mental, financial and emotional hardships of having multiple sclerosis.
As depicted in several weekly TV programs, MS is a disease that affects not only the person who has it, but also the spouse, family, friends and co-workers. It touches everyone. Just look at the reaction of having MS from the TV program, "The West Wing."
This past month I have spoken to several people who have MS and I won't mention their names so as to protect their privacy, but they are in the process of: losing his/her job due to not being able to perform the duties for which they were originally hired; being evicted as they can't make their rent payments; can't get prescriptions filled unless they are paid for in cash; cannot have repairs done on electric wheelchairs or scooters because of lack of insurance coverage and in some cases can't get the durable medical or mobility equipment needed at all; and the worst scenario was a suicide attempt that failed and another who was just contemplating it.
Just knowing that one has MS, a debilitating, crippling disease, should be enough to deal and cope with, but it isn't.
Take "K", a resident at a care/rehab center, who was told she would have to wait at least three weeks until the proper paperwork was completed and approved in order to get her electric wheelchair repaired.
A very minor repair that would take just a few minutes to do was tied up in paperwork. She would have to spend the time waiting in her bed. She was provided a loaner wheelchair from an outside source. It actually took five weeks before the repairs were done Ñ a very minor, simple repair.
Then there is "M", a young single mother getting no financial help from the children's father, who left her due to her having MS, and has had to cut her work hours back as she can't continue to put in the hard long hours required. She has no medical insurance to pay for her MS medicine and is close to being evicted, as she can't make the rent payments. Her parents and family have been helping her out financially. Now, she wonders if life is even worth living this way.
"D" was let go from his career job after being diagnosed with MS. Having a wife and small children, he thought they would be better off without him and tried suicide. Luckily, he failed and then realized what a mistake it was. He has since applied for an entry-level job to assist his working wife with the family income.
"L" has to live with her elderly grandmother being her caregiver, because she has no other place to go or the financial means to pay for it if she did. She continues to fall and has been taken to the emergency room at the hospital many times. She has been told she doesn't qualify for state aid.
"G" doesn't qualify for financial assistance to get a wheelchair so she is confined to staying at home. She can't walk more than a few feet without having to rest and falls quite often. She uses a walker and a cane. She hasn't left her home in several years. Believe it or not, she lives alone and has no family living close by to help. The neighbors keep an eye on her by checking on her daily.
"H" has interviewed for several jobs, as she wants to continue working, but as soon as they see her using a cane and find out she has MS, the interview ends. What happened to the ADA (American Disabilities Act) which guarantees employment opportunities for the disabled?
I could go on and on, but I think you get the message. There is something very wrong with this picture. MS is not the only disease with these problems, but if we don't do something soon, many people will not be around to enjoy whatever quality of life they may have left. I believe we have to stop the bleeding, then treat the wound. I don't have the answer, but if Medicare/Medicaid, the insurance companies, DSHS (Department of Social and Health Services), and other sources available don't make changes in the way the system works, it is only going to get worse.
People with MS are 24/7, while the people working the system are 8/5. I wonder if the shoe was on the other foot, if it would be different.
Again I repeat over and over, unless you walk in someone's shoes, you don't have any idea what they are going through. You may think I made up these case histories, but I didn't. These are examples of what I get involved with through the outreach services provided by Sno-King Multiple Sclerosis Community Services.
If you want to know more about what you can do to help, call me at firstname.lastname@example.org, (253) 838-3309 or www.MSHelp.org.
William L. "Bill" Brayer is director of Sno-King Multiple Sclerosis Community Services Outreach Resources and Information Center.