Last updated: October 2022
One day I woke up and realized that, after what felt like a year off, I could get back to my kind of normal once more. A year where everything felt like too much, felt too heavy. I felt terrified to push myself more than necessary in fear that I would break.
Constantly trying to escape
It’s been as if I’m testing the edge of a frozen lake that I feel starting to give. I leap back just in time, and to my horror, the ice begins to crack open. That was too close for comfort. The tip of my foot dips in just enough for me to know my body wouldn’t be able to withstand the elements. The water stood ice cold and suffocating. At that moment, I’m grateful my body had the gift of quick reflexes. I cannot allow this disease to catch up to me. I cannot allow it to drown me; the fear I feel is real. It is planted deep within me.
I have been wondering when this day would come. When I would feel my MS; feel it trying to suck the life right out of me. I know that if I allowed it to, I would drown in the frozen abyss. It would be as if I had forgotten how to leap back to safety. There would be no strength left to fight my way back to the surface. Slowly sinking to the bottom as visions of what I had planned for myself plunge to the bottom with me.
Why I must continue fighting against MS
I have too much to live for, too much left to do, to let it swallow me whole. I’m 31, and I’m still unsure of what I want to do outside of being a mom. I have a college degree that I have yet to use, and I cannot allow this disease to be my endgame. I have to push, have to fight. I have to swim frantically back up, to leap out of the icy water with new determination. To gulp in the oxygen outside of the water and remember what it’s like to breathe again. To know that I have a second chance. I have to relearn how to live again without just going through the motions. I know that the girl with the zest for life, the fun and exciting one, the one always up for new things is still here. I just have to work to get her back. I know that I cannot be the only one feeling like I’m drowning in this disease and the pressures of life.
The weight of the unknown
I try to do my best, but the guilt and my health are heavy baggage pulling me downward. I feel that I am not enough when I can’t give everything my best. And, just like that, the cycle of drowning and fighting to the surface begins again. When will it be easier? When will it not feel so heavy? I’m weak, it's getting more difficult each day to pull from my inner strength. My reserves are getting smaller, diminishing with each task. I’m unsure if I can make more. Will they run out? If they do, what on earth will I do then?
Fear of no return
That is why most days it's best to ignore it. I honestly cannot say if taking that path is making things worse, but I have to push back while I still can. Will my mind remain strong enough, or will I allow these setbacks to break every piece of positivity and hope for the future I have? Break them into a cloud of powdery dust that melts into the icy abyss. The abyss that I've just fought back from with all of my might. If it melts, then just like that - poof, it’s gone! There is no coming back from that.
Fighting is my only option
I can’t allow my mind to go to that place. If I do, then that makes it true, and that's a truth of an enormous capacity. Too big of a capacity for me to withstand. So, I keep going. I will FIGHT, until my last breath. I will fight for this life I’ve dreamed of, this life that I've been given. My life that I feel so undeserving of, yet fallen hopelessly in love with. It's a life that tries to drown me in icy and uncertain waters churning with chaos and MS. The uncertain waters can try all they want, but I've learned to swim through uncertainty. I’ll continue swimming and fighting my way back to the surface time and time again. A survivor, not giving up even when the hurricane hits.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: