I was always reluctant to go to the local MS support group meetings. Oh, I went when I was first diagnosed, but felt symptom free and irrelevant. I felt like I didn’t have anything to offer those already in wheelchairs and dealing with the social security disability system, for example.
Now that I am more disabled, I find that I’d rather spend my limited energy on other things. Like this MSFriends Peer Support Hotline. Everyone I’ve talked to so far has been a “repeat caller” and I’m constantly surprised and pleased that my experiences and the seemingly random things that I’ve gone through has allowed me to personally relate to every repeat caller so far!
For example:
M. sounds like a NY socialite. She recently took a fall and is now relying on a wheelchair (me too) and availing herself of the public transportation van service for the disabled. I told her that I had been finding comfort in Nancy Mairs’ book Waist High in the World.
She was moved to a short-term nursing facility but now has decided to move into an assisted-living residential facility. She asked me whether I thought it would be better to live near her children or to live near her friends. I said friends, definitely, that I consider it a quality of life necessity, but that she should consider the source: I’m childless.
E. is suffering from a similar type of bowel issue that OH is currently wrestling with. Because of this, I was familiar with his meds. He told me his gastroenterologist and his neurologist were not sharing information. So I suggested that he continue to look for doctors, that it was not inconceivable that he could be suffering from more than one thing, and that he needed a “quarterback” to manage the team.
D. was despondent over her chronic MS fatigue. I told her that I had recently read a description of MS fatigue as a “system-wide shut down.” No wonder she was suffering! I told her to be gentle with herself, to allow herself to take naps during the day, but she replied miserably that she had found that they interfered with her nighttime sleep.
So I reminded her that there was medication that could help, and she admitted to me that her neurologist had given her a prescription for one but that she was afraid to take it. Did I know of anyone who had already taken it?
Amazingly, I had!. But I told her that I was not taking it right now because fortunately I had experienced MS fatigue as a flare-up, an exacerbation, and so I wasn’t dealing with it at the moment. I told her that it was okay to take 1/2 or 1/4 of a pill at first to experiment with how it affected her.
J. sounds like the Eeyore character from A.A. Milne’s Winnie the Pooh. You know, “Don’t mind me but thanks for noticing.” He apologizes for taking my time every time he calls. He didn’t want to have coworkers feeling sorry for him, or giving him special treatment, so he didn’t tell them about his disease until his boss pulled him aside to “talk about his drinking.”
S. is in Louisiana and needs a neurologist that accepts Medicare. She says that her MRI scans were lost and one of her neurologists went missing after Hurricane Katrina. Another died of old age. When I suggested that she could go to medicare.gov to find a doctor that did accept Medicare, she admitted with embarrassment that she didn’t have a computer.
I felt like such an idiot to assume that everyone has computer access in their homes now. I got her street address, then went to the site myself and printed the list for her. I also included in the envelope the phone number for the Louisiana chapter of the National Multiple Sclerosis Society and some other local resources.
T. can no longer play his guitar or paint, but all his friends are urging him to write a memoir, to tell his story. He wants to do it but he’s paralyzed about where to begin.
I told him that I’ve been interested in writing since I was young, have read a lot about it and have taken lots of classes on it. I then suggested that he not get hung up on the intro. That he should just remind himself that he can come back to it later, but just to dive into the story. Maybe start with his childhood.
And even then, like the author Anne Lamott notes, “(W)ith writing, you start where you are, and you flail around for a while, and if you keep doing it, every day you get closer to something good.”
Happily, I’d like to reiterate that I feel strangely, uniquely qualified to volunteer here and that I have discovered a purpose. This is truly peer support. These are my people.
RELATED STUFF
- Plan B: Further Thoughts on Faith by Anne Lamott