One year ago today, I helplessly clutched my injured arm to my chest, desperately trying to press the pain out of existence. I could taste and hear the pain; I could smell the pain amidst the Tiger Balm and bathing of essential oils. The agony shook through me as if my arm were peeling from my body by molten fangs.
I had been in this level of anguish for more than one week, without answers, without decrease. It was this level even with the aid of oxycodone, Tylenol, and buckets of Tiger Balm, Arnica, Essential Oils. Sleep—or the attempt—only took place sitting up, pillows pressing an avalanche of weight and angles on my arm and neck to allow for a moment, hopefully, of rest.
This morning, three hundred and sixty-six days ago (because of leap year), I returned to Urgent Care, hope on cooling embers in my soul. Dad drove me to the door and opened it for me, because I could not let go of my shoulder, or I would start screaming in the unleashing pain.
I sat across from my doctor, who lowered his head to my level, making sure to look me directly in the eyes, “I know you heard me recommend an MRI last week, and you said you could not afford it. No insurance. But I do not think you are hearing me. This is not going to get better. In fact, I believe you are about to be paralyzed, if you are lucky. Otherwise—” he cast his hands out to the side and stared at me, shoulders lifted, eyes sad.
He had said the word “paralyzed” the week before, but I hadn’t really heard it. I had been going along in life, recuperating from a fall six months previously, and had finally started to think maybe I could do life again. So, how could I, out of the blue, be about to be paralyzed? But I heard him this time, through the audible pain. He wrote an order to get an MRI, and I wept as I tried to update my parents.
My friends had started a gofundme to help with my medical, but it was nowhere close to MRI level of payment. I posted from the car as I moaned in agony, having let go of my shoulder to use my phone with one hand. Friends immediately responded. One of the badass warriors I had worked with through nonprofit work, sent a large payment that would cover the MRI. I wept as we drove to the office.
Friends were swarming on social media. Prayers, messages, voicemails, texts, posts. The outpouring was moving and powerful. I wept to be so loved, to be so supported, to be seen.
I know I’ve had an MRI in the past. I know I have. But I don’t remember it. It passed by, an unmemorable event. THIS MRI did not.
We signed in as I held my shoulder tightly, desperately trying to squeeze back into place whatever broken nerve that had fallen into insanity. They handed me forms to fill out and I helplessly stared at them, one hand not working, and one hand pinching off the pain valve to bring the fifteen down to a ten, preventing me from screaming.
I don’t remember how the papers got filled out. I don’t remember how I got to the back. How I got my stuff in the locker. How I got to the room with the machine.
I remember sitting on the cold metal, shaking not with cold, but with pain. My lip could not remain still as I cried. The man stared at me, looking through me, as if I were a badly folded towel he was left to re-fold. “Lay down.” I tried to move and realized how much we rely on our arms to transition. He didn’t help. I finally got my legs up, to where I could start to lay back—a position I had not done for over a week, because the pain rose the closer my spine got to horizontal.
As I laid back, my breath caught in my throat and I was not able to ask the questions I wanted to: How long will this take? What should I expect? What do I need to do? Before I could regain any ground to speak, he had placed the neck support around me and closed the cage around my head. The table began to slide into the tube, the ceiling and room disappearing from sight as I felt my shoulders being pressed inward from the side. The ceiling now only inches away from my face, darkness closing in as the only light stayed near my feet.
The pain had opened up—not just a strain of agony, but a full anthem of torture. I couldn’t breathe. I desperately tried to stay still. The KNOCK-KNOCK-KNOCK of the machine crunched away loudly in my ears. Suddenly it paused as the man broke through on the speaker, his voice annoyed, “Ma’am, I’m gonna need you to stop screaming or we have to reschedule.”
I hadn’t known my scream was external. I thought it had been trapped with me inside the pain and agony. I sobbed back to him, “Please, no! I have to have this test. We can’t reschedule.”
He then said, “Then stay still and stop screaming.”
I held my breath, feeling like I was experiencing life in 12D, every part of my being screaming in pain, splintering out into the universe. The machine stopped again and the table slid back out as the ceiling, inches from my face, expanded into the room.
“I told you to stop moving and screaming. You didn’t. You have to reschedule. Get up.” I begged him to please bring my dad back, surely, if he were here, I could calm down. I could do it. The tech refused. I begged him, again saying I couldn’t reschedule, the doctor had said I was about to be paralyzed or worse. He motioned, “Get up. That’s not my problem. GO; reschedule. I asked you to stop moving and screaming. You didn’t. I have other patients.”
I shook in more than pain, feeling like a death sentence had been pronounced over me. I wept as I got the items from the locker, clutching my arm, which could no longer be even slightly muted by pressing.
Guttural sobs followed me out to the main waiting room. I pressed through the door and saw my terrified father standing, helpless. I was a mess, my face flooded in tears I could not control, my body in pain I could not stop. The faces in the waiting room reflected mine in panic not knowing what to do.
My dad and I stood at the counter as I desperately said that I needed my money back and I needed to reschedule. “Oh, you’ll have to call to schedule.”
Hopeless. Feeling like my life was being drawn from me, we got back in the car. In between gasps of agony, I prayed, “Amah, you have until October 1, 2019. If I can make it that long. I cannot live in this. I cannot survive in this. If you don’t provide a way out of this pain, I’ll make one of my own.”
What I didn’t know then, but one week later was told by my neurosurgeon at Barrow’s Neurological: they measured the pain levels that my nerves were sending and receiving and they were shocked. “My team and I have worked globally with patients and none of us has ever seen a person CONSCIOUS in the level of pain you are in. You ARE a badass. To put it into perspective: the pain you have been existing in would instantly cripple an adult elephant.”
I wouldn’t find that out until I was put into the hospital on the 17th, in one week. But before then, I still needed to figure out how to reschedule my MRI and have someone at my side to make sure I could survive it.
The next steps are a blur for me, but I know they involved me calling my friend, Leesha, and sobbing that I needed help—neither of us knew how much I was asking her to take on in the coming weeks.
My mom and I called my doctor to find out what to do. Someone told us about open MRIs [which, visually to the person in the machine, still looks like the other machine, with a ceiling inches from your face, but physically, both sides are open; if you turned your head, you could look out the window; if someone was with you, they could hold your hand].
On the phone to schedule this new MRI, I sobbed that I was afraid I was going to die before we got there. I didn’t have insurance. The last hospital ER I went to (see post from Sept 2) they sent me home without a single test.
AND I was *now* afraid of the VERY memorable MRI fail I had had. The person helping us schedule listened and apologized for the lack of grace and empathy from her coworker. She scheduled me to have another attempt at the MRI on the 13th—three more days, even though my doctor had labeled “STAT” for the MRI. Three more days. Leesha would be taking me. Staying with me. Holding my hand as the excruciating pain pulverized my being.
I just had to make it three more days.
Three more days and one test. Followed by the results that changed my world forever. I’ll write more about those in the coming days, when hope dwindled and armies of warriors rose from the sidelines and carried me through. When laughter showed up in places it had no right to exist. When friendships bloomed in the midst of screaming in agony and cowering from hallucinations. When friends showed the meaning of love and sacrifice and family. When I learned what community really is—near and far.
#SpinalCordInjury #SCI #InternalDecapitation #FriendsRisingUp #BeejHealth