Diary 2/20-23/19

She is living in a “world of hurt”, a “world of pain”. I have now acquired a new definition of pain. Having lived with pain for so many years because of neurological inflammation from what I believed was due to MS, I thought I knew pain. Mine came on gradually, over the course of forty years. First it burned all around my right sacroiliac joint, which has popped in and out of place many times as my muscles to stabilize it gave out. Then pain spread around my whole lower back. It seemed to form a river right up my back, wrapping all around my rib cage, then, extending up my neck, slamming into the bottom of my skull. More and more serious pain symptoms appeared in the last two to three years. I felt as if I were wearing my skin inside out. The sides of my hips, my groin, and down the ‘tuxedo line’ of the outside of my legs to my toes were being pinched into flaming hot numbness.

Sitting up was the worst, and standing up or walking became less and less possible as profound weakness accompanied the pain at the same time. The nerve information to my lower body was being cut off. Lying down made the sensations less sharp, and was tolerable as long as I distracted myself with light reading, writing, and short burst of socializing with family and friends, and I was (still am today) the Queen of Ice Packs.

Now I understand, that although I had MS starting at age sixteen, the worst of my experience has been due to a compressed spinal cord in my neck. MS definitely left its tracks of compromise. I am permanently weaker on my left side. My memory and ability to function under stress is worse, (since my mid-twenties), and the sense/memory of utter exhaustion when I was in an active MS exacerbation has somehow left its mark. It is as if when the myelin sheath coating on my nerves was stripped away by MS, it also took away some insulation that buffered me from ‘too much ‘ stimulation, from either joyful or difficult circumstances.

All along, the actual source of my pain was due to cervical stenosis. My vertebrae were squeezing my spinal cord, the neural tube that holds all the “wires” of my nerves. The laminoplasty surgery I received on Monday, addressed this. My spinal cord is now freed. Four vertebrae, C 3-6 ,have been cut open and the ‘roof’ of the bony structure that houses my spinal cord were opened to one side like a door. That released the nerves inside of my spinal cord after these many years. The surgeon put in new metal plate ‘doors’ held in by screws. The curve in my neck bones, a mild scoliosis, is gone. My post-op x-ray showed my bones lined up straight, like little soldiers. It is a medical miracle.

And now the post operative pain. Those of you who have had back surgery know whereof I speak. I have always thought I have a high threshold of pain from enduring short term traumas like dental work, childbirth and a badly broken ankle. The day after the surgery, when a spinal team doctor came to see me, she confirmed it. She said, “Other people have told me they have a high threshold and I say, uh-huh, and dismiss it, but I see that you really do. This was a major surgery, and to see you functioning as you are already, shows me you tolerate pain better than most. Your color is great, you are in such a good space that I am amazed and very pleased. Your recovery will go well.”

Now it’s my turn to say, “uh-huh.” This is ongoing acute pain like I have never known before. To say my neck and shoulders hurt is woefully inadequate. We cannot step inside of someone else’s pain. It is a very subjective experience. Treating pain has become a whole separate area of medical research and specialization. Understanding how the brain interprets signals and how to intervene with the correct medications is a new science. Reeducating the brain to tone down chronic pain signals is an art. Asking me, “How is your pain on a scale of 1-10”, is kind of ridiculous but the only simple measure that my nurses can use to help me. Better scales would be, “flaying your skin?”, chopping off your arm?, breaking every finger on your hand?” OK, you get the idea. It hurt. A lot. On a scale of one to ten, ten being,’ give me morphine and get me out of here’, I was hovering there round the clock.

The above was was written two mornings ago and still referred to Wednesday when I got home from the hospital after bumping home to Kendal in an ambulance. The EMTs apologized, saying, “ It’s pot hole season in Ohio”. Fortunately pain is never constant but rises and falls in waves like everything else. My pain has been reduced a lot, down to a respectable 3-4 when I am not moving, maybe a six when I worked with my OT and PT. During our work, it was easy to see what I have already regained. Both legs are stronger and have more resilience. Those practitioners have worked with me weekly since I arrived in June. They watched me in a steady decline and are genuinely happy to see me begin to regain what I lost. In a matter of months I hope to surpass the initial levels of my arrival. The hospital PT said in a year I should have a pretty good idea of how far I can go. The spinal cord was bruised for a very long time. Not everything will reactivate. I am not concerned about that. Right now I am just looking forward to my progress day by day.

My nervous system feels overstimulated and unfocused. Like a computer trying to find the right connection for my internet connection, my nerves are that little spiraling wheel, searching for a home. I feel like a baby hooking up a neural network for every new movement I make. “Oh, that’s how to lift your right leg, point your left toe, find your standing balance when you wobble, (even toilet training); it’s back to basics right now. As all infants do, I will reestablish those new highways of muscular obedience the more often I repeat them. Exercise is essential. Babies naturally explore how to navigate their bodies in the world non stop, experimenting every moment they are awake.

My body feels relieved when I find and use a forgotten muscle. It is thrilling, and the pain is beside the point. I am being reconfigured as a woman who is healing, rather than perpetually sliding downhill because it is MS, which cannot be fixed. This is an astonishing turn of events. I can barely take it in yet. It is an obvious gift to my rededication to life. There was a temporary resident in the first community I lived in during the late 70’s who used to say, “Onward through the fog.” Right now I say, “Onward through the pain,” and I am happy to do so. Gratitude is heartful and erupting quietly like a fountain of joy. I am blessed with the opportunity to be reborn. I thank you all for your ongoing support.