The past few months have been incredibly emotional; I think I have been kept so preoccupied with the whole process of everything that I really didn’t allow the questions to seep out until a month ago.
I was speaking with my neurologist on my final appointment for the study and the questions came out, one by one.
“My body is responding well to the medicine?”
“I had only one relapse in eight years when I was on a medicine that reduced my disease activity by only 45 percent?”
“This medicine reduces my disease activity by 95 percent?”
“So if I did as well as I have with the medicine that only reduced my disease activity by 45 percent, then I have a good chance of never having another MS relapse again, as long as I am on this new medicine?”
That was all I could say — “Oh.”
What could I say? It was such a strange conversation. I cannot count the times I had imagined walking into the neurologist’s office and having him walk up and give me a shot in the arm and then tell me I was cured.
This is definitely not a cure, but it is a new world for me and it showed up in the most unexpected way, and at such an unexpected time. It almost seems too soon or too easy.
So Many Questions
I have been shy to talk about this. I am still trying to figure out what it all means.
Who am I now? Who will I be now? What will I be now? Is this really real?
I have been struggling to accept that this medicine will not make me sick. There are plenty of risks for sure, but so far I have been totally fine, which never happens with MS medication and me.
The last medicine I was on stripped away my immune system to nothing. I am terrified of feeling confident in this medicine, of dreaming of my life again, only to have my body react negatively and find myself back to where I was just a few months ago.
Can I be a person who walks confidently through life? Can I sleep through the night with the knowledge that I will not wake up paralyzed?
A few months ago, the rational part of me was expected to acknowledge I had a solid chance of waking up some morning at least partially paralyzed. That is to be expected when you have MS.
Now, I am finding the rational part of me is expected to revert back to a mindset that almost all of us are born into and carry about ourselves for our lifetimes. I am expected to believe that I will not wake up some morning to realize I have lost the ability to move, to see, to touch, to taste.
I am supposed to go to sleep every night and rest assured that I will feel the same when I wake up as I did when I rested my head on my pillow.
A New Reality
One month ago, I slept through the night for the first time in almost 10 years. I woke up rested. It turns out, for me, sleep is my first step towards accepting this new reality.
I believe it is going to take many years before I will be able to fully accept I’m in the clear. For now, I feel the wealth of luck I had doled out onto me.
Out of the 2.5 million people in the world with MS, I am one of the first handful to be told I have a solid chance to never have another relapse again. I am holding this blessing and loving every moment I can enjoy it, with the hopes that those moments will keep stretching forward.
This drug is going through the FDA approval process as we speak. They are hoping to have it to market by the end of 2017.
Hang on, take good care of yourselves — hope is on its way. I love this medicine; it has treated me very well, and it has also ignited a competition with other MS drug manufacturers who are racing to get their comparable pills to the market.
A new world is on its way — be ready for it when it arrives.