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.

Youth Doesn’t Equal Health

I was 34 years old when I went through my serious illness, and I’ve always looked young for my age. As the illness progressed, I became extremely thin, which made me look even younger. People expected me to be healthy and happy because that’s how I looked to them. One day, while sitting in the lobby waiting to see a neurosurgeon, because an MRI scan had shown a brain abnormality that the neurologist thought was a tumor, an elderly man looked at me and said, “You don’t look sick enough to be here. You look too young and healthy.”

His words struck a painful chord in my heart. By the time that I got to that neurosurgeon’s lobby, I’d been accused of lying about my illness so many times that I’d actually begun to question my own veracity. Not because I wasn’t being honest about my illness, but because everyone around me seemed to believe that I couldn’t be as sick as I was. Multiple doctors told me that the problem was really anxiety or depression. If I’d had the energy to appreciate irony, I would have smiled at their desire to diagnose me with a mental health problem instead of a physical one because, as a psychotherapist, I was just as qualified to diagnose anxiety and depression as they were. I was afraid, yes, but it was as a result of the illness, not the cause of it.

After being disbelieved and turned away, my desire to be heard and to be helped with what I was going through became somewhat desperate. This didn’t help my situation at all. The doctors felt my desperation, and it further convinced them that I was simply an anxious person, not a sick one. A cycle developed.

As a psychotherapist, I was taught that I am not the expert on what the client is going through. Clients are the experts on their own experience, and it is my job to explore and respect that experience. It’s my belief that if medical professionals would adopt this stance, people would get the help they need to get better much more quickly and easily. Patients would feel heard and understood, and there is evidence that experiencing compassionate understanding is medicinal in itself.

Injuries, like the one that led to my illness, can happen to anyone at any age. Illness is the same. In fact, there are illnesses that primary affect the young. Just because people look OK on the outside, doesn’t mean that they are OK on the inside. I would like to ask the world to stop telling other people what they feel, what they are experiencing, or who they are. If you think about it, it makes no sense for me to tell you what you are experiencing. How on earth could I know? Ask questions. Reserve judgment. You’ll be surprised by how much you can learn about someone if you do. And you never know; the knowledge you gain might just save a life.

The Person I Truly Needed to Fall in Love With

I realize that I’m a few days late, but I have some Valentine’s Day thoughts to share. Valentine’s Day is always a difficult day for me, whether I’m coupled-up or not. This year I’m not in a relationship, so I had plenty of time to reflect on past romances. In the initial incarnation of my book, I’m Sick, Not Crazy, I weaved in a subplot of my relationships getting healthier as I did the things that made my body healthier. However, after some initial feedback, it looks like that plot may end up being my second book, but since this is my blog, and I can write whatever I want, I have a few things to say about love.

When I was 18 years old, I married my high school sweetheart. Even writing that line makes me feel painfully embarrassed, but it seemed like a good idea at the time. We’d been dating the entire four years that I was in high school, and I was raised in a conservative Christian home, so marriage seemed like the obvious and right next step. I was excited to get down to the business of being a wife, but the very first week that we were married, I realized I’d made a grave error. My ex-husband was in the Marine Corps, which had been the source of small problems between us while dating, but after the wedding, he began treating me like a drill sergeant treats a recruit.

During that first week of our ill-fated marriage, he became angry with me because I forgot to do something that he asked me to do. It was a small something, and I offered to do it as soon as he brought it up. Instead of accepting my offer to complete the task, he backed me up against a wall and screamed in my face for what seemed like a half an hour. I held my breath and closed my eyes, bracing myself for the punch that I expected, but didn’t come, while tears streamed down my face. Not only did I never forgive him for that, but it happened again . . . and again. Over the six years that we were married, he humiliated me in public, spoke to me like I was an idiot, screamed at me, and generally abused me. I didn’t realize that it was abuse at the time. I believed what he told me; that it was my fault, and if I could just be better, he would treat me right, but no matter what I did, things failed to improve. Now that I’m a therapist, and have training in matters of power and abuse, I realize that he didn’t abuse me because of anything I had done. He abused me because of him; because of his own internal feelings, and there was nothing that I could have done to change them. When I was 24 years old, he left me for another woman that he’d gotten pregnant, and I was relieved.

After my ex-husband left me, I met a man at work that I’m going to call Justin. There was an instant and strong attraction between us, and after he put up some initial resistance, we started dating. One day I was putting on makeup in his bathroom before work, and the bottle of liquid foundation slipped out of my hand, flew through the air, and splattered everything around me, including the carpet. Frantically, I started trying to clean it up, hoping to have it done before Justin saw, but I heard Justin coming into the room, and my heart started to pound. My ex-husband would have lost his mind over something like that. In his mind, there were no accidents, no mistakes, and no forgetting. Instead, Justin laughed and started helping me clean up the mess. I fell in love with him, hard, in that very moment, and our relationship is one of the more positive experiences of romances I’ve ever had. Justin and I had beautiful long talks about everything, and I believe that he loved me just as strongly as I loved him.

Unfortunately, he kept finding ways to sabotage the relationship. He told me that he didn’t ever want to get married and have children again (he already had two daughters from a first marriage). At age 24, I definitely envisioned having children of my own, so I broke up with him. However, he kept changing his mind, and after breaking up and getting back together over and over again for the next 10 years, he finally proposed marriage. We started planning a wedding, and I thought that I was actually going to get the relationship that I had always wanted with a man that I thought I couldn’t live without. It wasn’t meant to be. A few months before the wedding was supposed to occur, Justin announced that he was going to move to Texas because his ex-wife was going to be retiring there after getting out of the Navy, and he needed to be near his daughters.

If they had been little girls, I would have completely understood, but they were aged 16 and 18, and I was in the middle of establishing my career as a therapist. Plus, I was never going to be in a relationship again where my needs were not considered. Justin telling me that he was going to move to Texas, and that I could choose to either come with him or not, triggered my abuse trauma. I didn’t have the language for it at the time, but I felt it in the deepest part of my being that I couldn’t form a life with a man who didn’t talk to me before making a decision about where we would live as a couple. I gave the engagement ring back.

Justin contacts me here and there, but we’ll never get back together. Not because of his moving to Texas just before we were supposed to get married, but because of what happened afterward. After Justin left, I felt bereft and didn’t know what to do with myself. I needed something to put my energy into, and I found it in the local San Diego swing dancing community. The love I’d felt for Justin easily transferred to dancing, and I was dancing 4 to 5 nights per week, until one night a man I was dancing with dipped me so roughly that I sustained a serious whiplash injury. Within a week of the injury I was so sick that I couldn’t keep any food down, my vision doubled, and my cognition was so wonky that I couldn’t even make basic decisions, like whether to turn right or left. This went on for over a year, and at the worst of it, I was certain that I was going to die, whether of starvation, or by my own hand, I wasn’t sure, but I wanted to say goodbye to Justin before it happened. I called him and told him that I was sick. His response was to tell me that he couldn’t keep doing this. I didn’t expect him to do anything except say goodbye back, but instead he made even my illness about himself. That was the moment that I knew it was really over between us.

After a year and a half of an illness that nearly killed me, I was walking down the street toward Mission Beach and I met a man we’ll call Andrew. He was beautiful. Probably the most attractive man that I’ve ever dated. We had a lot of fun together, and traveled all over the world: Australia, England, France, Thailand, and more. Andrew and I moved in together after 3 years of dating, and lived together for two years before I moved out. Living with him was impossible for me. He spent all of his time in front of the television, completely numbed out. The TV noise was overwhelming to my sensitive nature, and living with someone so absent made me feel more lonely than being alone.

After moving out, I decided that I must be doing this dating thing completely wrong. I’d missed the training that most people get in early dating by being with my ex-husband so young, and for so long, so I did what I always do when I need to learn something new–I took a class. Dating coaching was extremely helpful and motivating, and I spent most of my time outside of work on dating apps and going on dates. After an exhausting few months of fruitless dates, I met a man I’ll call Steven, and fell crazy in love with him. Steven was almost divorced when I met him. If he’d told me on the first date that he was in the middle of a divorce, I wouldn’t have gone out with him again. Unfortunately, he waited until a few dates in to tell me, and I was already hooked. I’ll never know if Steven felt the same way about me that I did about him. I believed that he did for the 10 months that we dated, and he was the one that initiated each next big relationship step. He suggested that we go on a trip to Kauai together. He suggested that I go with him to Connecticut to meet his family. He suggested that we move in together.

That last suggestion ended up being the death knell for our relationship. Steven lived about a 40 minute drive away from me with no traffic. With traffic, it would have taken me about an hour to get to work from his place. He worked about a 10 minute drive closer to where I lived, so it seemed logical to me that we could move somewhere in between where I lived and where he lived and we would both be happy with our commutes. However, Steven’s comment about where we should live was, “I’ve decided that I’ll watch the condos across the street and we’ll move in there when one opens.” You’ve decided? Flashbacks to Justin deciding to move to Texas, and my ex-husband backing me against the wall to scream in my face whenever I did something he didn’t like engulfed me. After giving it a day or two to think, I approached Steven and told him that his location posed difficulties for me, and that we should talk about where we would live together and make the decision as a couple.

This proposition seemed completely reasonable to me, but in my heart I had already decided that if he insisted that we live in his area, I would drive the hour to work each day because I loved him so much. All that I wanted was for him to be willing to talk to me about it.

He wasn’t.

Instead of talking to me about the issue and coming to a resolution, he told me that he “didn’t have it for me,” and that he really wanted to re-engage in fighting with his ex-wife. I was beyond shocked . . . and heartbroken . . . and broken.

It’s been over a year since then, and I’ve been engaged in the deepest and most intense self-healing work I’ve ever done, and that’s coming from a licensed psychotherapist. What I’ve discovered about myself is that I’ve been relying on others for my sense of value. This strategy was the one that I was taught by movies, and songs, but it’s unsafe because I can’t control the behavior of these other people. When they leave me, I lose my foundation, and I’m left shaking and alone. Unfortunately, I’d been abandoning myself for these others all of my adult life, when what I really needed to do was stay with myself and love myself first. Loving myself first sets the model for the love that I receive from others. When they see how I love myself, they know that they have to love me with that same intensity and kindness, and nothing less will do. Most importantly, if they leave me in the end, I still have myself to love, and my foundation is still strong.

I don’t know what your history is with romance, but no matter what is going on with you, I invite you to also love yourself first, and to cultivate your relationship with yourself. The more you’re good to you, the more that you will inspire others to be good to you. Best of all, if you are your own best partner, you won’t be hungry for love, and you will only accept the very best.

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.