“I’ve been through a whole lot. Trials and tribulations. But I know God. Hope the wholly water don’t go dry.” ~ Kendrick Lamar
My neurologist’s English accent made it hard to understand what he was saying. But his conclusion was obvious by the expression on his face. It caused all my hopes to dissolve. Paralyzing my consciousness. Damn near killing the dreams of my future.
Until then, I never knew how it felt to be broken. But now I can testify. Because I have been ordained by my diagnosis. And a part of me believes this is how I’m supposed to be. I accept that reality in order to maintain my sanity.
God gave me the ability to choose how I want to share the story of this plight. So, I elect to do it by spreading the love I receive from the world. Despite knowing it may not come back to me in the form I want. But trusting it will come back.
Still, I have breaches in my faith. Sunday morning sitting in church reading scriptures. Searching for relief. The smell of burning candles saturate the cavernous room. As the building slowly fills up with parishioners, people are saying hello to each other. The reply of God bless you echoes through the cathedral. I find each salutation inexplicably calming.
Right up front, in the handicap section, that’s where you will find me. Listening to the Word. Tring to figure out if I’m the Shepard or the sheep. Dressed in all white. Looking like an Angel. Feeling like a sinner. Rosary beads in hand. Gazing towards the sky. Tears in my eyes. Asking the heavens why. Praying for protection. Nonviolent, but still hoping the Universe kills what’s residing inside of me.
Living a life sustained by faith. Body parts like ice castles built by bruised feelings slowly melting from each exacerbation. Folded hands placed firmly together. A Japanese thank you. Each finger clasped tight. I close my eyes to escape my reality. Sleepwalking like I’m healthy. Even though I have trouble controlling my movements when I’m awake.
Old lady to my left. Old lady to my right. Despite having their own visible limitations, I can tell from their stares they feel sorry for me.
With pity on their faces they say, “God bless you my child”.
I know they mean well, so I greet them with a receptive grin. Then I bow my head. Ignoring my surroundings until I can hear nothing. Slow breathing until I can sense nothing. Deep meditation until I can feel something. Waiting for the voices from heaven to transport me through my thoughts. Floating on hope. Finding peace knowing soon someone will give me another Sunday morning God bless you.
Bit late in responding After nearly 40 years, I am probably at a similar level of disability to you. Constant UTIs from the damned catheter and bowel issues. Your writing is beautiful, spiritual, profound and important. Please keep expressing what your soul is feeling.
Wow!!! I don’t usually reply but I identify with this so much. Well put
I enjoyed your post! I was diagnosed with MS in 1991, and currently reside in a hospice house. I’m on my way out to take a walk with my rollator, and I’ll be thinking of your message and the prayer of Saint Francis. Have a great day!
You keep me going. I fell and broke my femur bone, was in Rehab for a year to learn how to walk. Times are hard for me, But I stay in prayer. Hopefully they will find a cure,
I always look forward to your posts ! The comments and stares from people in church can hurt so we have to train them to be better. I tell people to watch the Paralympics and that I do not accept your pity !!
Keep your chin up. Remember the bracelet I sent you. I can do all things through Christ that Strengthens Me!!
You are a BRILLIANT writer!!
Vivian
I understand how it feels to be stuck with MS. I also pray daily for healing and a cure.
I have followed you for years now and each stage is tougher than the last. I am not FT in a qheelchair yet. I do use a cane and walker, regularly. Each real change in base líne is tough. Esp eye problems, walking. You inspire me.
Brillianly transferred from inciteful thought to pen!