Before I got multiple sclerosis (MS), I didn’t know what was important in life. I thank MS for helping me focus. Over 35 years, as the disease has taken away mobility and limited what I could do physically, MS has forced me to focus on what I could still do and to give those things the attention they needed to succeed. As a result, I have achieved more with MS than I did when I was more able-bodied.
As a smart, healthy white boy child in 20th century USA, I was often told I could do anything I wanted. I could be whatever, go wherever I pleased. As a result, I scattered my attention and efforts and wound up achieving very little. I had hugely unrealistic and contradictory goals like “saving the world,” becoming a famous writer, a musician, and a healer of sick people.
I tried all these paths: playing in a band, organizing political campaigns, writing for progressive newspapers, becoming a nurse and studying alternative healing methods. I had some low-level success in them, but not much. I was going in too many directions at once and not putting enough time and effort into any of them.
I thought I could do it all, that I had all the time in the world to achieve some unknown thing that made me feel good about myself. As I grew older, these vague, unmet expectations left me frustrated.
In my 30s I developed MS, and chronic illness gave me focus. As walking got harder and fatigue took away hours of each day, I realized I didn’t have forever. I couldn’t do it all. I needed to be realistic about what I could do and how I could do it. Whatever I set out to do needed to be specific and to match up with my limitations, and I had to give myself to it completely in the hours I devoted to it.
Learning to live with MS was a gift to my writing career. Chronic illness is a great teacher, and as I struggled with it, I was inspired and strengthened by the lessons it kept sending. I wished it would stop, but sharing these lessons gave me something to write about. It still does. I was able to write my first book, The Art of Getting Well, about these lessons and get it published by an actual publisher, go on short speaking tours, and get occasional gigs like this one at WebMD. It wasn’t saving the world; it wasn’t becoming famous, but it was something.
To do even this much, I needed to change some habits. A big one has been budgeting my energy. I can’t write all day; there have to be frequent breaks to stretch out or lie down. I couldn’t book long tours of speaking engagements, because I would collapse. For people without chronic illness, work/life balance is important; it keeps them happy. For people with MS, getting enough rest and paying attention to our bodies is necessary to function at all.
As time has gone on, I’ve had to be ever more strict about guarding my energy. I can only do so much in one day or one writing session, only do so much cooking or cleaning without needing a long rest break. Likewise, we can only do so much in a year, or in a lifetime. It’s so much better to do a few things well than to do too many things and make a mess of them.
For people with jobs, setting these kinds of limits is a lot harder. Employers don’t want us to balance. That’s why I’m so grateful for Social Security Disability Insurance (SSDI). As an advice nurse (a seated job), I may not have strictly been unable to work, but it was getting more difficult to focus for an 8-hour shift. And I couldn’t do anything else in life but work those shifts and crash.
So I applied and I qualified. I look at SSDI as government paying me to do good things. Freed from the energy drains of work, I could focus on what was important to me and try to do good in the world.
Even without burdens like a full-time job, small things can interfere with focusing. I’ve had to learn to let all the trivial or negative stuff go. Not to worry about what other people think of me. Not to try and do everything myself. Get help with unimportant things that others can do better than I can. I don’t have to be the star of the show; it’s also good to be a role player or even an extra. I’m still part of the show.
Then when the time comes to take a solo, I can have the energy and focus to do it well. The good thing about having a diagnosis like MS is that others won’t expect you to do everything. They do need us to do the best we can.
We need to focus in areas besides work, and MS pushes us to do that, too. With relationships, I may not be able to do as much for people physically as they need or I would like, but I can give them love and listen to them. I can share with them what I do have.
There are a whole bunch of skills to help with focus. Learn how to be clear and specific about the help we need and what we can realistically accomplish in a given time frame. I have learned to always ask for more time that I think I really need, because MS will cause missed deadlines if I’m not careful. And who needs the stress?
So I stand by what I said in the first paragraph. I’ve accomplished more with MS than I ever did without it. I’ve published two highly regarded books and collaborated on two others. I organize to bring people together in my community. I’m not what most people would call successful, but I’m OK. With or without MS, none of us were going to save the world anyway. We can focus on the lives we have and do some wonderful things there.
To connect with other people living with multiple sclerosis join our MS Facebook Support Group.
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