As September comes ever closer, so does my medication change. During July, September seemed so far away but now as we get to the end of August, September 21st seems so much closer.
On that day, I will be talking to my MS nurse to begin the two week process of flushing the Aubagio from my system. I’m not sure what that will entail yet. I will be without medication to protect my body for three to five days and then I will begin taking my new medication Mavenclad. This new medication comes with a whole host of side effects and symptoms. I will have to isolate while I am taking it for up to six weeks or so as Mavenclad will destroy my immune system and builds itself back up again.
As I’ve gotten closer to September, the fear inside of my mind has grown and some days, it feels like it’s taking up my whole body, as if I am a walking cloud of fog and shadow. I am at the edge of the dark forest, and while I have seen the light within the trees, I have yet to go in. I am trying to understand this fear and the changing landscape of my body.
I know that the best thing I can do for myself is what I’ve always done, tackle everything with positivity and light, trying to remain thankful and grateful for the life that I have around me. It’s hard for me to do that without knowing what the new medication will do and how it will affect my body and my life. And yet, I can’t continue holding on to all this fear. I can’t let it rule my life or my body.
It’s not like I haven’t faced the unknown before. My whole life has been a series of unknowns, maybes and I’ve survived it. I’m trying to figure out why this unknown, the maybe of the Mavenclad, is having such an impact on me. I’ve been drawing cards and meditating about this and I’m no closer to an answer. I’ve come to realize that that’s okay.
I’ve faced Maybe’s before and climbed the mountains that I need to climb, but I’ve never really owned up to my fears before. When I took on the task of living my best life despite and because of my Multiple Sclerosis, I did so without acknowledging the fear that I carried with me. Now, I am trying to look at my fear in the face and understand it. I’m trying to see what I can learn from it.
So yes, I am afraid. However, this time my fear will be one of my superpowers. I’ve been open about my fear with my husband, friends and family. I also know that I am not alone in all of this, that I am not living on an island with only my cross to bear. It’s not a mantle I have to wear alone. That changes things for me, the knowledge that I am not alone on this journey and we are all facing the unknown together.
I think the thing that bothers me the most is that the MS is taking more away from me, despite what its already taken and what I’ve already given it. I had to miss a family gathering this weekend, I will have to miss a Thanksgiving celebration as it Thanksgiving takes place during the time that I will have to isolate because of my immune system being shot. As much as I try to take a point of view of positivity and light in the face of my challenges, I’m just so fucking tired sometimes of what it has taken from me and what it will continue to take.
I will learn form my fear and my anger, I will befriend them instead of running away, so that I can thrive and survive this. I will embrace the idea of maybe so that I can learn to breathe. I do not know what the Mavenclad will do to me until I am right in the middle of the storm. I will have to go with the flow and ride the waves. I’ve climbed mountains before and I will climb this one, too.
I will sparkle on, despite the maybe of Mavenclad and when I reach the top of this new mountain, I will let the sun shine down upon my skin.