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.

Compassionate Care

Every year in January, I get an MRI of my brain. This has been going on for 9 years now, so it’s not really a big deal to me, and I don’t expect that I’m going to get bad news anymore. It takes about a half an hour of being in the MRI machine, which doesn’t freak me out as long as I keep my eyes closed. I learned my lesson quick on that account when I opened my eyes during one of my early scans and saw the top of the tube right in front of my face, and nearly went into a claustrophobia panic. For the first twenty minutes of the scan, I just lay in the tube and try not to be deafened by the cacophonous clacking of the magnets, and then they pull me out of the tube and inject a contrast solution and put me back into the tube for another 10 minutes. The purpose of these scans is to make sure that a spot they found in my brain during my 2011 illness doesn’t change. As long as it doesn’t change, they tell me that they just want to let it be. I do my best to trust that they won’t ever have to do anything more invasive to my brain.

This year, I scheduled my yearly brain scan in a new location thinking that it would be more convenient for me. Getting ready for an MRI is kind of like going through security at the airport in that they are quite concerned about metals of any kind on your person. They ask if you’ve ever been exposed to shrapnel, if you have any metal implants of any sort, and then they make you strip and get into a hospital gown just in case. I hope they never start doing that last part at the airport.

Arms wrapped around myself to ward off the chill of walking around in a hospital gown, I got into the machine with the help of the MRI tech and the nurse, and was prepared for it to be the same routine as every year for the last nine years, but this time, when the tech pulled me out of the tube to do the contrast injection, it was quite different. Since I have an aversion to needles, I looked away as he prepped me by wrapping a tourniquet around my upper arm and told me to make a fist. Then he told me that there would be a slight sting, and I prepared myself for the usual injection pain, but this time it was so much worse that I started to sweat and got woozy. It felt like the vein in my right arm was going to explode.

I told the tech, “Wow. That hurts a lot more than usual, and it’s making me feel faint.”

He said,”Oh, don’t worry. That’s just the pressure of the contrast against the walls of your vein.”

Trying to take deep breaths against the pain and wooziness, I said, “I’ve had this done a bunch of times and it never felt like that before.” I didn’t want to say it, but I felt like he had the needle in wrong.

His response was, “I’ll just do it as slow as possible for you.”

Um no. “Actually,” I said, “please finish as quickly as you can. I need to get this over with or I’m going to pass out. I have a history of doing that.” This is true. I’ve always been squeamish around medical stuff, but due to my protracted illness in 2011, my medical trauma has made my squeamishness exponentially worse.

He finished the injection, and said, “Never had that response before, huh?”

“No,” I said, taking deep breaths and trying to mentally be somewhere else . . . somewhere cool, like Scotland.

With that, he put me back in the MRI tube to complete the scan.

Now, it’s entirely possible that I just had a bad reaction to the injection, but the tech’s assumption that it was my problem, and not anything that he might be doing wrong was triggering for me. I’ve had blood draws before that were terribly painful and left bruises because the phlebotomist made a mistake, so I know that it’s within the realm of possibility that the extreme pain of the injection this time wasn’t just my own reaction, especially since this is the ninth time I’ve done it, and I’ve never had a problem before.

The reason that I bring this up is that one of the main premises of my book, I’m Sick, Not Crazy, is that the medical system needs a huge compassion overhaul. During my 2011 illness, I was shocked by the number of times I was told that the problems I was having were likely “just anxiety.” They definitely were not due to anxiety. It’s true that I was terribly afraid about the awful and unexplained symptoms I was having, but I knew that they were due to a neck injury I’d sustained. It took months to get any doctors to listen to that explanation.

I went from doctor to doctor without any relief, and a huge increase in stress and sickness. Eventually, I came to a frightening conclusion. I believe that there is an entrenched culture in the medical system of blaming the patient when the doctor doesn’t know what the problem is. I also believe that this bias toward blaming the patient is a major barrier between patients and the diagnoses and treatments that they need. My hope is to spread the word that a small increase in compassion and the ability to listen to what patients are saying would create a huge shift in the wellness of the community. I hope that you’ll join me in the work to spread this message.

The Necessity of Compassion

Every three months I go to see my awesome neurologist for botox injections into some of the muscles in my neck and along my spine. After a severe injury in 2011, I was terribly ill, and had a slew of diagnoses before they finally settled on spasmodic torticollis, which means that the muscles along my neck and spine have a tendency to contract involuntarily, causing me to sometimes make odd movements with my head and my shoulders. Every now and then someone will point it out, but most of the time people can’t tell that it’s a problem from the outside. From the inside, the worst part is a sensation of movement under the skin, like bugs are crawling along the back of my neck and head. It’s not painful, but it’s frustrating and distracting, especially when I’m trying to sleep.

Today, as my doctor inserted a probe into neck and back so that she could listen to the muscles, which gives her information about how much botox to inject, we discussed the fact that we both work as providers for Kaiser, (her a neurologist, and myself a therapist) and that we are mostly lucky in our patients. I agreed that most of my patients are lovely people, and I feel honored to help them. Then she said something that resonated with me. She said, “The ones that aren’t nice to us have been through a lot. They have a lot of somatic symptoms, and they’ve been minimized to the point that they feel defensive.”

She didn’t know it, but she had stepped into one of the main themes of my book; the fact that when people are ill and seeking help, and they come up against medical professionals that minimize their symptoms and tell them that they aren’t real, it’s harmful. It causes them increased stress, which has been shown in research to exacerbate symptoms of illness, shut down healing, and erode DNA, causing aging. Research has also shown that a small amount of compassion on the part of healthcare providers/medical professionals goes a long way towards decreasing pain and healing times, as well as helping patients to understand their treatments in a way that leads to better compliance with medications and procedures that their doctors recommend.

Hearing my neurologist acknowledge the struggles that some people go through trying to get help while they are also suffering with any number of possible illnesses, and how negatively that affects them, was a beautiful thing to hear. It not only led me to trust her more as a person of empathy and professionalism, but it also motivated me to continue the work that I’m doing to get my ideas out to the world, and to you.