MS; my friend…my demon. The endless oppression I feel as it towers over me, whipping me for everything I do. No matter how hard I try; try to befriend it, forgive it, love it; it turn it’s back with hateful spite. One day I walk free, the next I’m crippled with pain…with numbness. The roller coaster I’ve boarded is relentless.
I relish the better days; feeling incandescent with hope that the next day could only be better. I forgive, I befriend, I trust, and it stabs…when I am most vulnerable. How many times is acceptable to have your hope crushed? Your forgiveness disintegrated to nothing.
Is my hope for “good” my fault?
I like to believe that there is good in everything. If you search hard enough in those unsteady areas, you’ll find the goodness it holds. I can try to explain the challenge that I face in finding the beauty in my situation, even when I keep falling…literally. It’s so easy to be happy on the days when my MS is napping and when I am being extra careful not to wake it. But when it strikes, I can’t help feeling helpless and discouraged…because this keeps happening to me and, why do I let it? I let it drag me down into a deep pit of anger and sadness…of loneliness. And here, I see the face of my demon.
Everyone says that your attitude and focus play an important role in recovery. They say “stay positive…you’ll get through this…just relax.” I believe they are right but, I only wish it were that simple. Because, not only am I fighting with my body, I’m also fighting with my mind; to NOT be sad, to stay STRONG, to keep MOVING forward. When I persevere through the lashes and finally rest…crippled…I feel angry for not stopping before this point.
Now that I reflect on these moments, I see the goodness in my perseverance. My fault is NOT in my hope and forgiveness, but in my anger towards myself after the terrain I’ve overcome. Though I say MS is my demon, I believe it is more my teacher; and that the negativity I let consume me, because of my MS, is my demon.
This week was a demon week. Still struggling with the virus brought by my fever; exacerbating ALL of my symptoms. I felt lethargic, weak, fatigued, sad, and hopeless. I was in that pit and I felt sorry for myself. In public, I tried to mask all of the pain and self-loathing, of not being able to complete things as I should…as most anyone can. I kept a smile displayed in attempt to convince myself and others that I’m okay; when really, I’m dying inside. Few suspect anything, only those that can see me limping and bouncing off of surfaces. I see their look of concern…of pity…and my feelings are mixed. What are they thinking? How pathetic do I look? Do they know? Do I want them to know? So, I sit and my leg begins to bounce…continuous and involuntary; I have to physically stop it with my hand. I wish…I pray…how badly I want this to be over. And, in the privacy of my room, I feel all the rage and pressure that’s built up over the day, and I sink into my sad little pit. Life shouldn’t be this hard, should it? What am I doing wrong? How do I get rid of my demon?