Even with multiple sclerosis, I’m celebrating my independence
Keeping in mind what I can still do as we recognize the Fourth of July in the US
Here in the U.S., today is the last day that someone out there will have all 10 fingers. It’s probably wishful thinking to suggest that it’ll be only one person, but I’m trying to be optimistic. In anticipation of the holiday tomorrow, fireworks sales started picking up about a month ago. Millions of my fellow citizens have stocked up, and some of them may not be as careful as I am.
In case you think I’m being aloof or overcautious, I’ll reveal that we have some fireworks, too, but it’s my wife and kids who’ll be setting them off instead of me. That’s for several reasons. First, my children can operate a childproof lighter while my multiple sclerosis (MS) won’t let my hands do so anymore. The second reason is that the fireworks come with a warning label that reads, in part, “light fuse, and get away,” and MS has seriously affected my ability to get away.
Tomorrow is the Fourth of July, and fireworks are part of the traditional celebration here. It’s a little ironic that the light from our fireworks, and the others we’ll see tomorrow to mark U.S. Independence Day, seem to illuminate some of the independence that I’ve lost.
I know that the examples I’ve given are little things, but then most of the examples of my lost independence are little things these days. Things that don’t seem like they should be important have become increasingly important to me. It turns out that MS magnifies more than small increases in temperature or a seemingly minor illness; it also makes the little ways that I’m still independent seem big.
My declaration of independence
Looking up the definition of independence will yield a number of similar results, but for me it boils down to two things.
The first of these is trust. You can drive on your own, live on your own, manage your own finances, and more because you have the trust of the people or institutions around you. Along with that, you also should have trust or confidence in yourself to do things without the assistance of someone else. In both cases, honest communication is the key. That means being honest about your abilities with other people and with yourself. I’m not sure which is harder.
My other criterion for independence is what you consider to be normal. That can be particularly difficult to define even if you don’t have multiple sclerosis. With or without this disease, what was normal for me 10 years ago isn’t my norm now. MS further complicates it by being so variable. I don’t have a set norm. What’s normal for me can vary based on the time of day, what I ate or didn’t eat, how much sleep I got the night before, and the weather, among other factors.
That can lead to the pitfall of comparison. You might question why other people with MS are better off or worse off and wonder what’s wrong with you. Remember that multiple sclerosis isn’t a one-size-fits-all disease. What works for some doesn’t work for others, and in the same way, what’s normal for some isn’t normal for others.
I’m telling myself these principles as much as I’m telling them to you. Even though I know it’s an exercise in futility, I still compare myself with other people with and without MS and wonder what I’m doing wrong. The truth is, I may not be doing anything wrong except trying to conform myself to someone else’s normal.
My definition of what it means to be independent seems to have changed. But has it? I’ve changed, my life has changed, and my abilities have changed, but my idea of independence hasn’t. I trust myself to do what I still can, and so do the people who care about me. My concept of what’s normal for me is a bit flexible, but if I’m doing what’s normal for me, then I’m doing it independently.
I’m going to enjoy all of my family’s Fourth of July activities, especially the fireworks. I may not be able to light them anymore, but that’s part of my normal. I still think their glow will illuminate my independence.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Julie devlin
I would love to receive any news on MS
Ian R
I hope you had an enjoyable 4 July. We visited Florida c.7 years ago and had a great time watching the 4 July parade.
The loss of independence is one of the cruellest dishes MS serves us. MS is sometimes described as a disease of losses.
As our disability worsens we lose more and more of our independence. I’m still semi-independent - I still drive, walk short distances with a crutch, shower (with the help of handrails).
It’s time that the pharma companies / MS researchers used “Independence” as an outcome measure for their expensive drugs. The number of relapses and lesions is irrelevant to MS patients who really want to “stay in employment until normal retirement” (financial independence), “continue to walk / drive a car” (travel independence)…. We need treatments which stop worsening disability (thereby stabilising our current level of independence) and, eventually, treatments which promote some repair (giving us some of our lost independence back).