Pain and Hurt from a Narcissistic Disease- the Draw and Repulsion Of MS Pain- My story

Can you remember having a loose tooth as a child. It hurt, just a little. The pain drew you in. You wanted to touch it. You wanted to experiment with that pain. There was a sharp edge, but that imparted an exquisite knowledge of the world. This pain was necessary to growing up.

There is the pain of a mild bruise. You ran into the coffee table and it’s a little greenish yellow in its center, and blue as it extends to meet your normal flesh. It’s sore to the touch. It fades, but you touch it to see if it’s still there.

Cowboys and heroins deal with pain. They overcome pain, but they feel it acutely on the journies to redemption, discovery or love.

Maybe my relationship with pain was romanticized. I grew up with stories of the overcoming of pain, but I also grew up with stories of its tragedy. I sat as a young adult with an MS diagnosis while my Grandfather had a moment of clarity, the fog of his Alzheimer’s disease lifting. He told us a story, my great uncle Owen run over by a wagon wheel when a child spooked the horses with a slingshot on the school wagon. My grandfather’s pain, but also the remembrance of this last act care giving to his little brother shown in his eyes. He recounted sitting with Owen, while he died, and holding him. The story shone in his eyes as he took advantage of the clearing of the mental fog, to share this vital information with his progeny. Later, he laid his hands on my head to bestow a Grandfather’s blessing for my good health. He blessed me that this burden would never become more than I could handle. He blessed me that I would have help watching over my health, from my family, alive and dead. He blessed me that my doctors would know what to do, and I would always find answers to the questions I sought. I felt so comforted by the weight of his hands, resting on my head. I felt a portion of his soul, interacting with my brain. Sometimes it rested heavy.

My head is tingling all the time now. It’s been a gradual change, from headaches, to itching, to tingling and numb patches, and other patches of hypersensitivity. But I just thought to comfort myself with the memory of his hands. I remember my grandfather’s hands and the way my beautiful Aunt would place a warm, clean sock filled with rice, heated in the microwave to return the color. She diligently replaced it. I remember how she would sing while she completed her chores of care and love.

My grandmother told me another story of an ancestor who’s little sister snuck up on him when he was harvesting with a sickle. She was cleaved by accident. I thought of the pain he must of felt for his favorite sister. This pain seems pointless. Lost love and relationships that are felt for generations. I cannot think of those stories without the flow of tears.

Yet I was attracted to these stories. The beauty of my ancestors loss and perseverance. My grandfather saved my brother from being thrown out of rollercoaster by pulling him back in by his belt. He cared for us. Aside from his wife’s one miscarriage he never lost another child; he was vigilant.

So I’m speaking of pain and the way it can be seen. Pain can be pointless, or it can bestow knowledge.

When I was 22 I had a relapse that would suddenly take away my ability to walk, and then I could walk again. It would give me violent spasms that I couldn’t ignore. Buckling from my core, reverberating my spine and shooting through my limbs. The pain was an extreme discomfort and a total loss of control. I was taken over it seemed, possessed. I let it take my mind for a time as was a draw the pain, like the loose tooth of childhood. I feared the pain but I dwelled in it. Like the mists of green spells that drew princesses to their doom, they drew me, enveloped me, and violated me to the point I waited in dread and anticipation of the next wave of spasms.

The cure for the pain was fighting the desire to isolate. I want to hide away and punish myself in pain while my soul hungered to cry out for someone to help. Words would be caught in my throat. But if a loved one came, a family member, my boyfriend, I could get out. The touch of another human being who loved me drew me out of the pain. It lessened as its all consuming nature disintegrated. I found I didn’t have to dwell there.

This came up in my mind as I listened to the song Hurt by Johnny Cash. “You can have it all, my empire of dirt, I will tear you down. I will make you hurt.”

MS is insidious. It takes away parts of our bodies by controlling our minds, interrupting our spinal column. How do we fight something that takes us down and tears apart the temple of our body from the inside?

We fight it together. The connections MS breaks can’t break our connections to one another. We fortify ourselves against this monster by building up someone else who’s had a hard MS day.

I don’t know quite where I’m going with this, the pain came to my mind as I listened to Jonny Cash as I lay in bed, really unable to do anything else today. My husband helped with the kids and helped get lunch ready while I tried to repair myself enough that I can get up later. I do this by turning off, meditation, listening to music, closing my eyes. I gotta just turn off, no need to try to work through the glitches. Let the glitches work out themselves so I can get up again.

I have MS Hug, the pain cleaves through sometimes. I am still here, and I feel like my grandpa and those two ancestors that went through that core pain and the ultimate sacrifice. My mind preserves their beautiful lives and the tragedies that ended them. I’m still whole, I’m still here and the protection of the people that have raised me has seen to it.

Thank you everyone who reads these words. Thank you for pulling together to fight MS. Thank you Grandma and Grandpa for sharing these stories of pain, to help me find the beauty. My pain is so much less than their’s. I still am privileged to have family in this life.

My pain may not mean that much more than some misfiring wires that are confused, taking sensations away and sending out negative ones when there is no enemy coming at me from the outside. Yet, I still live with an insidious disorder, that gaslights me constantly. My bits have been divided, but they still come together. MS, you can keep your “empire of dirt.” I have a life that shines.

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