A few weeks ago an old friend called me out of the blue. We had been in touch on and off throughout the years, and she knew I have MS and am a Health Advocate. She had a friend who lived in my town that also has MS. She was wondering whether I’d be interested in paying her friend a visit. It seems her MS was steadily progressing, and her living situation was not adequate for her daily demands. I told her I’d be glad to help.
We met her at her friend’s house. From the outside it looked quaint, situated on a cul-de-sac and overlooked a gorgeous lake. Her show-like dog was loose outside, clearly starving for attention as he immediately sprinted toward me to be stroked. When I entered the house, the stench from cigarettes hit me. It looked as if no one had cleaned in weeks, with laundry and litter scattered all over the floor. We walked down five steps to where her friend’s (who I will call Sally) bedroom and bathroom were. It was the basement, yet it was bright and cheerful since it was a walkout to the backyard with a clear view of the lake.
I looked at Sally sitting in her wheelchair, watching television and looking unkempt. When I looked at her face it hit me – I met her years ago when she was thinner and happier…and walking. She had been working tirelessly to recruit people for her team for WalkMS. Now she was confined to this small room – her world consisted of a chair, a bureau, a TV and her bed. As we began to talk she told me she had two children, ages 10 and 13, and a husband who “hated her and was only caring for her because there was no one else.” I was deeply saddened.
A few years ago I received my Patient Advocate Certificate and was trained in separating myself from the patient so I could be effective in helping out. If you become too emotionally involved, you lose your ability to think clearly and act responsibly. That was in the back of my mind as Sally and I spoke. I wanted to be her advocate and give her the benefit of my knowledge and experience.
Prior to my visit, I compiled a list of things she should do in order to make baby steps forward. Things like talking to her insurance company about getting a home health aide, calling the National Multiple Sclerosis Society to fill out an application to qualify for programs and financial aid, calling MSFriends for 24/7 support and gave her names of physicians I knew personally enough to recommend (in case she was unhappy with hers). I had Sally record the telephone number for Medicare and place it into her cell phone. I told her to place an ad in the community newsletter asking for someone to donate a ramp, and possibly find a team of residents to help clean her house (realizing this may be emotionally difficult to ask).
I noticed her feet were blown up like balloons, and asked whether she was concerned about them. I asked her permission to call her physician. (I was worried about the possibility of edema or, worse, blood clots). We phoned her neurologist.
I have lived with MS for 25 years. I have relapsing-remitting, and I can walk and drive and bike. I have led support groups and worked with MSFriends. I give lectures to nursing homes about MS on behalf of NMSS. I write about MS and blog about my life. But no one can adequately prepare you for the ravages of this unpredictable disease that upsets the lives of so many.
In the moment of reaching for Sally’s hand and gently telling her I was there for her, I suddenly felt wholly unqualified to preach the gospel according to me. She was living a life very foreign to me. Yes, we have the same illness. But it wasn’t the same at all. Was I helping her? Would she be angry that I could walk and she could not? All I knew was that I would have to do the best I could, and the rest was up to her.
After our talk ended two hours later, I said goodbye and told her I’d keep in touch. I wrote to my friend and provided the details of what I think Sally should do to better her and her children’s situation, and gave her names and phone numbers of people who may be able to help. I asked her to gain Sally’s permission to rally the family (she hadn’t spoken to anyone in years) and to rally friends as well. I told her to call me if she needed me again.
We live in a fast-paced world where everyone runs on his or her own treadmill. We, the MS community, know the importance of helping each other, of reaching out to others to comfort, advise and inform. Without that we would feel alone and isolated. There is so much good information and good people around. I know here at HealthCentral we are setting the standard of what we are all here for – to help one another.
P.S. I have since heard that Sally has spoken to Medicare, has a home health aide coming to her house, has an LPN friend looking in on her, and has been in contact with her siblings. I consider this a giant step forward. Let us all pray that her life becomes one of quality.
Published On: September 25, 2012