“We all live in a house on fire, no fire department to call; no way out, just the upstairs window to look out of while the fire burns the house down with us trapped, locked in it.” ~ Tennessee Williams
My head is haunted. Daydreams and fantasies control my thoughts. It’s maddening. Can’t believe what I’m experiencing. Diagnoses doesn’t seem real. Thought my doctor was blowing smoke. But he was right. MRI set my reality a blaze.
Now I’m on my hands and knees gathering up the ruins. Digging in the ashes. Searching through the cinders and debris for any remains. Preoccupied. Can’t focus on everyday task. Because I’m fighting for a cure. Battling my own body as it rubs two sticks together. Scorching my soul. An arsonist burning down everything I’ve built.
Making me unrecognizable. I’m different now. Reborn every day. A new person. I barely remember the first me. My life goals are a moving target. My purpose constantly changes. Ambitions are linked to my circumstance.
Continually falling down rabbit holes. Hoping sanity doesn’t abandon me. Wishing I could go back to pre-diagnoses and make the clock tick slower. But every day is spring forward daylight savings.
Husband used to take me to the mall and tell me, “Get whatever.”
Now he takes me to doctor appointments and says, “We need the mall money to cover the co-pay.”
Pills for breakfast. Anxiety for lunch. World swirling out of control. Driving around dead man’s curve. Trying to keep my thoughts straight.
Chasing rainbows at night. Wishing on imaginary stars. Praying for a cure with no side effects. Living in a pit I did not dig. Feeling like I’ve lost everything but hope. Turning people off because I keep talking about pain. They want me to hold my tongue. Well, hold my beer because I have just begun.
Nancy Reagan told me to just say no. But I need that dope. I ingest those toxins just to make it through the day so I can feel normal. It stops the seizures, calms the lesions and keeps the other symptoms at bay.
Steroids. Prednisone. I’ve done it so many times. For so many years. Osteoporosis runs through my body.
Red buckets filled with old needles sit on the floor in the back of my closet. Arms baring the evidence of early multiple sclerosis. Skin damaged where I used to poke myself. Searching for good health. Sore fingers. Sore shoulders. Sore stomach. Before oral options. But no more. Now pill popping is all the rage.
Happy most of the time. But my situation can be draining. And in the hours before chaos, my life feels like a movie. Except that it’s not. It’s real.
Besides you can’t hold me responsible. MS is to blame. And yes, I will admit, I am annoyed. Upset because I didn’t get to choose. Seeing red. Illness just appeared out of the blue. Got me thinking about waving the white flag. Forcing me to flee.
Now I’m trying to escape through the crawl space of my house as my surroundings simmer from the heat. Witnessing a demolition. Watching multiple sclerosis start little fires everywhere in my life.
I was very moved to read of your experiences with ms. I too have ms. Every day is a challenge. Some good some not so good. Your openness is refreshing , your courage inspiring. Stay strong
Nicole, this is such a raw, honest, and sad discription of your life. I also have MS and have lived with it now 40 years. My experience with this disease changed almost 12 years ago when I joined an MS study with Dr. Raymond Damadian, the inventor of the MRI. He imaged me and identified problems in the craniocervical area, where the spinal cord connects to the brain. Using advanced software and hardware able to image the movement in cerebral spinal fluid (CSF) designed for the Upright Multi-position MRI (which he also developed), he identified a unique phenomenon occurring in MS patients. When MS patients are imaged in the recumbent position, their intracranial pressure is normal but when imaged in the upright position (weight-bearing), the pressure more than doubled normal. (Healthy subjects experienced a slight drop in CSF pressure when imaged upright.) This ground-breaking observation led to his first observational paper written following his CSF flow study. No other MRI is capable of comparing recumbent and upright imaging, and no other MRI is able to image the movement in CSF regardless of how powerful. Pharmaceutical companies have educated both patients and neurologists to try another medication or pill to address this disease. What choice do they have?
Simply put, it was this information that helped me, and also knowing Dr. Damadian, and being fortunate to be included in his MS study. My images displayed a diagonal atlas (C1), a rotated C2, and scoliosis in my cervical spine creating 4 blockage points in my CSF flow. As a result, the CSF was backed up in the ventricles of my brain (where the CSF is produced), and leaking out of all four of my ventricles. When I was showed this by Dr. Damadian, he pointed out how this leakage led directly to the lesions in my brain using a type of cine motion videography. It was at this point that I was introduced to Dr. Scott Rosa, a researcher focused on head and neck trauma for decades. He was able to non-invasively perform atlas alignment using an atlas orthogonal instrument, perfectly aligning my cervical spine. I was in the progressive stage of MS (SPMS) and had been losing my eyesight for years when treated by Dr. Rosa. My eyesight was back immediately when I sat up following the alignment. Dr. Damadian explained that most patients showed improvement for 12 to 14 months once the CSF flow is opened and leakage stops. When this occurs, the disease progression stops, and the body tries to heal itself with the adult stem cells we all have, although decreasing in number as we age. Even though 62 when aligned, I still realized regaining some additional lost abilities. This included getting the feeling back in my fingers and abdomen, numb for years from my ribs through my groin. I got the feeling of urgency to urinate back and could empty my bladder, gone for so many years I had lost track. This resulted in no more bladder infections, a chronic problem before my alignment. Along with getting my eyesight back, I regained the ability to speed read, lost as a residual to an exacerbation 25 years before. I also regained the ability to whistle, lost 25 years earlier, and I didn’t know it was related to MS. Most pain with MS is related to spine issues. When I experience pain, I go for another AO alignment from a local chiro with an atlas orthogonal instrument using the vectors established by Dr. Rosa.
Not all people can be helped by atlas alignment alone. More complicated issues like CCI (craniocervical instability), for instance, may take more science. I still have MS, wish I could stand longer and walk further, but my life has been so improved by these doctors. It has been almost 12 years now and none of my regained abilities have regressed. I read between 4 and 7 books a month, drive again, and have had only one bladder infection in 11 years. By the way, I could not remember having head or neck trauma when I joined this study, but something messed up my cervical spine.
Oh my -this is such a moving piece with its raw honesty. Thank you for letting us into your space.
I am so sorry my friend…. I hate that the MS fire keeps raging in your world. There is one spark I hope never goes out though. The spark of light that shines from your talent and your honest words. Thank you for sharing that spark with us. I don’t understand the rest. We humans have learned to do so much. Why the @#@$^^&@ can’t we learn to put out the advancing MS blaze..
This piece is an evocative prose picture – excellent.
Wow. Powerful. Thank you
The good part is you’re still trying to escape. The bad news is when you don’t want to escape. So keep pushing. You can do it!