Don’t Call Me Brave, I Didn’t Choose The Ill Life

“You’re such an inspiration!”, “You’re so brave”, “What a warrior you are!”, “I’m so proud of you!”, “You’re my hero!” These are just a sample of the types of comments that so many people with Multiple Sclerosis often get from other people. While they are exceptionally well-meaning and even appreciated, I think there are many in our situation that cringe at those phrases. The main reason it may give us pause, as we try not to make a face, is that it very much highlights the very thing that so many of us are trying hide: that we are different to you.

Who is brave?

When I think of bravery and inspirational people, I tend to think of people that chose a path when they could have avoided it. Like people who volunteered in WWII, or first responders who charge into an accident scene despite the danger to themselves, or even teachers (low pay and all those kids? Whew, that seems brave to me!). I know I never volunteered to get Multiple Sclerosis. Trust me, if I could give it up, I’m sure I would. There would be few situations where I’d probably choose to get an incurable disease. But, I have it, and like most of us with it, I survive. You really have no other choice, you can either go with it and do your best to thrive or give up and, I don’t know, not survive? I don’t know because people don’t really give up. We really aren’t given the chance to give up. That’s kind of my point: we aren’t really given a choice at all.

CAREGIVER PERSPECTIVE: UNEXPECTED SADNESS

I got hit by feelings of sadness unexpectedly today. Keeping my self out of my husband’s sight at all times, I had to work really hard to hide the fact I was very close to crying. Usually, I guard my emotions well, and rarely break down. However, I have one weakness that I can’t seem to guard against: music.

Fell in love with his singing

Lynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either.
Afraid of being hurt a second time, I kept up an emotional barrier until he wrote a song that he sang to me as part of his marriage proposal. I love his voice and to hear him sing as he plays his guitar or drums just melts my heart.

Struggling to Find a Purpose

Since I’ve been writing about my life with Multiple Sclerosis, I’ve covered a wide range of topics. Many of those will typically include pieces that discuss, not necessarily a specific symptom, but the changes and emotions I (or others) encounter because of living with MS. While symptoms like pain, fatigue, and cognitive function are extremely difficult to live with on their own, the collective effect that the disease has had on my life is sometimes the most difficult to deal with. One of these unfortunate effects that I struggle with, often on a daily basis, is trying to find my purpose in life.

Questions purpose in life

While not everyone with MS is on disability or forced to leave their career, there are many that are in just that situation. No longer able to work full time, struggling to fill their days. Additionally, many people may still work, but their bodies allow for little more than that. They are still making a living, but perpetually paying the MS Tax for it, leaving them with a tired life of only work. Whether the disease takes your livelihood or your social life, or both, it can create feelings of unfulfillment and lead us to question our purpose in this life. What’s a life when I’m not contributing and making a difference? What’s a life, if all it is is work?

When You’re Doing All You Can

“What about this? What about that? Have you heard about that other thing?” Our well-meaning friends, and sometimes even ourselves, are constantly looking for the answer to our chronic illness. Searching for that magical treatment that will fix us and let us live the lives we once lived. The not-always-welcome-truth of the matter though is that many of us are already doing everything we can to fight our disease. It’s not easy to accept that multiple sclerosis has no cure. It’s also not easy to accept that you may be doing everything you can and you’re still not back to your old self. Coming to terms with having an incurable illness is extremely difficult. Accepting that you are doing all you can doesn’t make you a quitter though, it allows you to begin to live.

Are you really doing everything?

I can’t talk about accepting your position until I emphasize that, maybe more than any other disease, multiple sclerosis requires you to do a tremendous amount of work. Are you seeing a knowledgeable enough doctor? Are you maintaining as healthy a diet as possible? Are you getting some form of exercise? Have you seen speech, occupational, and/or physical therapists? Are you taking care of your mental health? Treating multiple sclerosis requires much more than a great neurologist. Even if you are taking a disease-modifying medication and you haven’t had an exacerbation in a long time, you may still not be doing enough. There may still be room for improvement. There is a lot you can do to fight this disease, it really is a pain in the ass. I have to be blunt here: honestly, if you aren’t a little frustrated by the number of appointments and things you have to do to fight this disease, then you aren’t fighting it as best as you could be.