Every Victory is a Victory
One of the most difficult parts of living with multiple sclerosis (for many of us) is probably accepting that we may no longer be able to do some of the things that we used to be able to do. This really drives me mad even though I have come to terms with many of my physical and mental disabilities MS has brought about. But it’s not as simple as that, you see, relapsing-remitting MS is a very dynamic disease in that it can always get better or get worse and for some of us that may be more frequent. You finally come to terms with your new baseline or your new “normal” and then? Then you have a relapse and everything is just terrible but the worst part is, even when you get over a relapse, when the waters settle, you may not be 100 percent back to your previous baseline. “Normal” for you has once again changed. Now you must learn to accept you new “normal” all over again.
It’s true what they say, “you don’t know what you have till you lose it”. Before I was diagnosed with MS I road motorcycles, I hiked, I bowled, I went out late, I drew, I sculpted and at one point I could run a mile in just over 6 minutes! And I could do so much more! But after I was diagnosed with MS and after time saw my disease progress I found myself able to do less and less. I slowly accepted that it was no longer safe to ride motorcycles, my hikes got shorter, I no longer had the strength or balance to bowl, I no longer had the energy to stay up and go out past nine or ten at night, I had to put my pencil down and I could hardly walk unassisted let alone run! As I lost the ability to do these things I slowly realized that I had to learn to appreciate every little victory in my life that I could because living life feeling as though you can not accomplish anything is very depressing.
At first, this was hard because I would struggle and require more and more of an effort to just walk around public and I felt no sense of accomplishment because all I could think was “yeah, but I used to be able to run… what happened? How did I get to this point?” That mentality changed when I was stuck in an inpatient rehabilitation hospital for 6 weeks. I was losing so many functions so fast and was stuck in a wheelchair for what felt like forever! I just wanted to walk so badly! On my own two legs! Something so simple that I had been doing without thought for almost all of my life. I didn’t know what I had till I lost it. I hardly had any dexterity in my hands, my speech was so slurred, I was being spoon fed while we discussed the fact that I may need a feeding tube, I could not use the bathroom on my own, nothing was working! I felt so broken… I had realized just how fragile I was.
Though it was a horrible experience I am glad I had it because not only did I learn a lot but I learned how to celebrate every little accomplishment, I learned that every victory is a victory. Learning to walk again is probably my best example of this; the first time I stood up from my wheelchair without anyone around to help me felt so good! A while later I was walking around the house with a walker! No one really likes the idea of a walker at first, especially when you are just 22, but I didn’t care because I was moving from point A to point B on my own two legs! Victory! One day I may have only been able to walk 20 feet and the next day I may have only been able to push it to 21 feet but to me? That extra 1 foot meant I was 1 foot closer to 100 feet. Over time, with much hard work, I went from measuring my walking distance in feet to measuring it in miles. So that first 1 foot was a victory because it was proof of progress.
Progress may feel so slow but progress is progress and you have to feel proud of every bit of it. I find myself feeling good that I was able to do such simple and mundane things simply because last week I was unable to. “I did the dishes today” “I used the oven today” or “I made it from the kitchen to the living room without spilling my cup of coffee today!” The other day I was able to climb up a ladder (just two steps/rungs) and install a ceiling fan! I could not believe it! Sure, before MS I was a DIY guy and could have done that with my eyes closed (not really, that would be all sorts of dangerous) but wow! I did it on my own! I sort of felt dumb for feeling so proud of myself but to not need help felt so great! Who knows what I will be able to do in a month!
So, to me? Yes, it was simple compared to what I used to be able to do, but now? Now all I really think is “every victory is a victory” and whether you think it was a small victory or a huge victory it was still just that, a victory.
I have the hardest time with my MS during the following season: