HELP Wanted?

I had to ask a stranger for help the other day. Not to just open or hold a door for me but to readjust me. A bit more intimate. It was 12:45 pm. I was in our building’s courtyard. My foot had slipped off the footplate of my wheelchair. I had tried swinging it up myself to no avail. I knew it was 12:45 because I looked at the time to see how long it would be until Adam would be home (at least 4 ½ hours). I knew I couldn’t wait. My leg had already started to ache. I made up my mind. Rachel, you need to ask someone for help. I knew I needed someone who was strong enough to lift my leg and preferably spoke English. Finally, an acquaintance walked out with his dog. I asked him to put my foot back. He looked, lifted, no big deal. I thanked him profusely. Done.

It was harder on me than it should have been. It took strength to admit I needed help. I have to accept I can’t do everything on my own anymore. Asking for help does not admit  weakness. With multiple sclerosis, constant adjustments need to be made, the most difficult of which aren't always changes in physical routines, but revisions in attitude. When you have MS there are times when you need to put your health and comfort above your pride.

Living Without a Cure

You often hear about cancer survivors; those who have beat cancer. But there is no beating a chronic illness. We live with multiple sclerosis; it does not go away and it can’t be cured. As Congressman Morris Udall said about Parkinson's disease, "I won't die from it, but I will die with it."

How do we live knowing there isn’t a cure? We live day by day. MS requires maintenance. We have to be regimented to make sure we get adequate rest, avoid triggers, take medications on time, and do what we can to avoid exacerbations. It is also important for us to just feel “normal” and go out and stay up late, even if we may pay for it later.

Knowing there isn’t cure doesn’t mean we live without hope. We do, however, have to combine a hopeful outlook with a realistic outlook.

So-called fixes are everywhere. If you do this and stop doing that, follow this, buy this book, etc. you’ll reverse MS. These ‘cures’ are often condescending and essentially blame us for making ourselves sick. Do not fall for false hope.

I think I’m a pretty smart person. I understand my circumstance is out of my control. No amount of kale can make me well again. And because there is no known cure, the best I can do is work with my healthcare team to manage disease activity, ease exacerbations and perhaps slow progression.

The progress, severity and specific symptoms of MS in any one person can’t be predicted, but advances in research and new treatments are perhaps moving us closer to a world without MS. We hope to prevail in the end. So be encouraged, despite the hard challenges that lie ahead.