How My Illness Began

Like the rest of my personality and life, my illness was outside of the proverbial box, and I had difficulty explaining what had happened to me when I was seeking help from medical professionals. Part of the difficulty was due to the cognitive effects of the injury that I sustained, and another part was due to the pure strangeness of the circumstance. Whenever I said that I had a whiplash injury, people would assume that I had been in a car accident. When I said that I’d sustained the injury while dancing, people would dismiss me as overreacting to a minor injury. I actually had several medical professionals laugh.

Since I’m writing this blog in support of the book I’m writing, I’m Sick, Not Crazy: How I Took Control of My Health When Western Medicine Told Me it Was All in My Head, I think it’s important that you understand the injury that kicked off my illness, so here’s the description from chapter one of my book (names have been changed to protect the not-so-innocent):

The night it happened, Michael, who organized the events, asked me to dance.  I was a little bit surprised.  My relationship with Michael had been awkward, for reasons that I didn’t fully understand, and for months he hadn’t asked to dance with me.  He was highly experienced, so he was fun and exciting to dance with, throwing in moves that I hadn’t been led into before.  Our dance started out fun and easy, and I relaxed into his practiced lead.  Then, to my complete surprise and chagrin, he grabbed my ribcage under my armpits with both his hands, and forcibly flung my upper body backward into a dip.  

As my spine curved as deeply as my body would allow, my head flung in an arc.  Having trusted Michael to lead me with respect, I wasn’t guarding myself, so my body was warm and pliable.  Mid-forced-dip, I did my best to flex my muscles and protect my body, but it was too late.  Michael abruptly pulled my body back up and out of the backbend.  Centrifugal force had its way, and my head continued backward as the rest of me was pulled upward, and my neck made a loud CRACK sound and stretched out from my shoulders like a slinky with a bowling ball stuck on the end.  Something at the base of my skull, on the left-hand side, seemed to become loose and squishy.  Wow, I thought, that felt really weird.  After what seemed like forever, my head caught back up with my body and I stood upright in front Michael, dazed.  

He grinned and said, “I know you like it rough like that.” 

What?

I frowned at him.  He didn’t seem to notice my distress at all, and just kept leading with a self-satisfied look on his face.  Shocked into silence, I unenthusiastically kept following his lead, waiting for the song to end so I could get away without a public confrontation.  When the song ended, and Michael let me go, I was relieved.  I sat down, shaken; taking stock of my body. Rolling my neck from side to side, checking the range of motion, and moving my limbs around told me that my neck wasn’t broken.  I told myself that meant I was OK, and I got up and got back into the dance.

            In the morning, concerned for my own wellbeing after the dipping incident of the night before, I went to Urgent Care.  The doctor took X-Rays and told me that everything looked fine.  No lasting damage.  Relieved that it wasn’t more serious, I resolved not to dance with Michael anymore, and mentally planned to get back into my regular routine. 

That night, I woke up a few hours after falling asleep and vomited until the sun came up.  Over the next few weeks, things steadily got worse.  There were days where I felt mostly normal, and days when I felt like I had been filled with poison and couldn’t see or think straight, and the worst was the nights spent on the bathroom floor vomiting into the toilet.  Never having sustained an injury that didn’t readily heal before, I thought that if I waited it out, I would start to feel better.  

            With the attitude that this was all quite temporary, but that I should get looked at anyway, I decided to go and see my own primary care physician, Dr. Benavides, and explained to her the injury that I had sustained and how I was having so many problems afterward.  I felt certain that she would know what to do.  All of my experience of the medical system before this had shown that they would be able to help me when things got rough.  

When I had pneumonia and was so weak that I couldn’t make a fist, there were antibiotics.  When I had labyrinthitis and was so dizzy that I had to crawl back and forth from bed to the bathroom until it cleared up, the doctors had known what it was and what to do.  I had even been hospitalized a couple of times, but the doctors had been able to diagnose and treat my symptoms effectively.  In my mind, I wouldn’t be alive if it weren’t for Western medicine. 

            Dr. Benavides listened to my story and then had me put my arms out straight ahead of me and resist her while she pushed down.  She said that it seemed that my body was stable, and she wanted me to engage in physical therapy.  She made the referral and I started seeing David, a physical therapist, a couple of times per week.  He was tall and thin, with the coolest hands I’ve ever encountered, which felt delicious when he worked on my neck.  The poor man spent an inordinate amount of time working in my armpit, and he kept telling me to place my hands on either side of open doorways and then stretch my arms open against them to open up my chest.  He said, “I don’t think you could do too much of that.”  I did the exercises he prescribed religiously, but things only got worse.            

My buttocks were extremely sore for several weeks, to the point that I had to buy a cushion for my seat at work and sitting down after standing was so painful that it I groaned.  I started to have a sensation of strangling across the front of my neck.  It felt like I was slowly being garroted all of the time, and sometimes I felt I could hardly breathe.  There was numbness and tingling in my forearms and pins and needles in the back of my neck.  My head felt unstable on my neck like my muscles were suddenly too weak to hold it up.  I was frightened.

From I’m Sick, Not Crazy by Jennifer James

Things only deteriorated from there. It’s still not clear exactly what happened inside of my body, although I have some theories. Diagnoses ranged from brain cancer to occipital neuralgia to multiple sclerosis as I went through multiple medical tests to try to find out what was wrong with me and how to treat the problem. The testing process was traumatic, and didn’t ever give a definitive diagnosis. Eventually, I had to accept that my body was never going to be quite the same, and start looking for ways to minimize the impact of the injury on my life, and maximize my ability to live.

As it turned out, Western Medicine didn’t have the answers I needed, and it wasn’t until an inspired neurologist suggested that I start practicing yoga that I actually began to heal. My book describes the descent into illness, and how I managed to pull myself out of the hole through alternative treatments. I believe that those of us with outside of the box illnesses don’t have to rely on a medical system that doesn’t know what to do with us, and often blames us for what we are going through. We can take control of our own healing and move toward wellness through multiple avenues. It can take some trial and error to find what works for you, but I encourage you to explore, and yoga is a great place to start, especially for physical injuries.

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