In March, I swore to myself that I would not release articles any longer. I felt, and still feel, that nothing more needs to be said. However, as dualism would have it, I think I am in error.
I am looking for inner peace. I know of my own mortality and am waging a battle grasping for straws.
For those of you late in joining this journey, I have a slow-progressive neuro-muscular condition. There is no cure, and the disorder will get worse. We are thinking that it is HSP Complex, that is: Hereditary Spastic Paraplegia. The “complex’ caveat means it isn’t just paraplegia, but quadriplegia also. I have issues with my full body, lower and upper. The issues seem to be focused on my voluntary and sensory systems. However, there is scant evidence that some of my autonomic systems are affected.
My brain exists in a mind-fog a good portion of the time. We don’t know if the diversion from reality is due to medication or the degradation of my neurological system. My facial muscles are occasionally affected by the rigidity. Most notable is my inability to drink from certain cups. My lips will not conform to the shape of certain cups and the liquid drips everywhere. Drinking from straws is a challenge, too. We have giant smoothie straws which my lips have a better chance of sealing on.
My neck muscles get very tight. Turning around to see what is behind me is an impossibility most of the time. We are finding more issues with my neck. We are awaiting test results.
My shoulders, arms and hands are increasingly affected. Sometimes, just touching the keys of a keyboard is horribly painful. Other times, I can’t control my fingers so I use voice recognition until my voice is so garbled that the machine doesn’t recognize me.
The muscles between my ribs do an amazing job of making me feel like my chest is trying to tear itself apart. This is nicknamed the MS Hug. The sensation is common in multiple sclerosis. Although I don’t have MS, my disorder mimics the symptoms well.
The abdominal wall occasionally buckles beneath my Intrathecal Baclofen Pump located to the left side of my tummy. I have never gotten used to the feel of the muscles contorting against the hard underside of the pump. It is a very uneasy feeling. If we could increase the dosage of ITB, I could function better, but alas, I have a sensitivity to the one drug that would help me. Increasing Baclofen levels shut down my ability to breathe. So, that’s out.
The lumbar, sacrum and illiac regions of my lower back are the genesis of all my issues. Indeed, my original diagnosis was a simple back ache. Now, we know my vertebrae are mostly fine. A little osteoarthritis here and there. It’s the nerves they protect that is rotting from the inside. Bastards, all of them. I wish I could replace all my nerves, that would cure this. Sorry, a little emotional there.
The adductors, left and right, are generally so tight they need to be deactivated. I’ve received Botox injections in them because they were screaming tight for over a month. With Botox, you loose the muscle, but you gain sanity.
My calves, and forearms, are getting huge from the stress consistently placed on the muscles. However, when I flex them to show them off, there is no going back. I have to massage the pain out of them and try to get them to relax. For some reason, this set of muscles are increasingly problematic. We have tests, later today, to hopefully determine why. From knees to toes and elbows to fingertips, my body frequently is on fire. It is amazingly painful. I understand it is fake and I put it out of my mind. Still, it is disconcerting.
There are a number of prescriptions at my disposal. Some, I’m must stop taking due to the cost. This is a losing battle, why throw money down a hole for no reason. The question I pose to myself is at what point does the neurological centers wear away so much that I completely go insane? Will that ever happen? What will it be like, trapped inside a body that you can’t control?
I have a friend that passed from ALS. I am told she only could text at the end. Blessedly, she went quick. My wife and I will likely have decades of this disorder before we finally slip up with the medications and I stop breathing one last time. I pray she doesn’t blame herself when it does.
We play with fire, every time I take medication. However, life is a trade-off. With the meds, my pain-level is about 5/10. Without, 8/10. If you ever have had a pulled muscle, think of having that pain in about 60%-80% of the muscles in your body, appendages, neck and face. Then you will begin to approach where I am on a good day. A bad day means I am delirious with the pain. I start loosing my ability to articulate at 8.5/10. At 10/10, I don’t know who I am. I mentally retreat into a place that is difficult to describe. Hopefully, I can write about it in another article.
Seems a little sensational? You are not alone in your belief. Many of the people I considered to be close to me, think I am lying. My prayer is that this disorder is not wholly genetic and ends with me. I do not want this to be in my kids’ bloodlines, nor in my nephews’ and niece’s. No one should be made to have this pain, regardless of how cruel they are to others. I have a few people I have been blessed with their presence when things have gone bad. In my mind, they have earned their wings. “And the king will answer them, ‘Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me.’” Matthew 25:40 NRSV.
Thanks for reading,
Jay C. Theriot