by Renée Canada
Tonight, while brushing my teeth, I slammed down on my derriere for the umpteenth time in the last year. My head fell back until I was laying flat on my back, eyes closing as I temporarily lost consciousness. When I came to, I crawled back to my room. Each movement hurt, as I swayed unsteadily, my knees, back and ribs aching from previous falls and my consciousness once again threatening to waver. That’s when my mother found me, with my face planted in the carpet right before my doorway.
“Are you okay?” she asked.
“Yes,” I said weakly. She didn’t buy it for a second. She pulled my glasses off my face. Tears sprang to my face as I realized that in only a week my integrative nutrition school is holding its big conference in New York City. “How can I go to it like this?”
“You can’t,” my mother said, matter-of-factly. She tried to comfort me by saying there would be other conferences. Other times and chances to hear the speakers give talks.
I told her how much it meant to me to meet my other classmates, to connect and network with people who will be doing what I be doing and gain advice and more knowledge from graduates who’ve already gone on to do great things. My tears got heavier and my voice got more pitiful as I went on. She said I could go on one condition: if she came with me. It was missing the point.
Today is day seven of being hit by random bouts of unconsciousness. I’d already been forced to cancel Labor Day plans to go out of state to see one of my dearest friends who was visiting from Germany, while also getting the pleasure of spending great one-on-one time with a special friend. Somehow we’d arranged things so that the timing was just right for both of us to have a mini-vacation together—if I wasn’t randomly passing out, multiple times a day. The idea of traveling one hour by myself before I could meet my friend and not knowing how I’d do on a plane ride terrified my parents. Then putting the friend through the anxiety of wondering exactly what to do if and when my body misbehaved when we were together didn’t seem fair—as much as we both were looking forward to it.
Instead, it was another weekend with family, mostly in bed or stretched out on the recliner couch. I actually have grown to appreciate quality time with my parents. And hey, when you lose your alternatives, you learn to adapt.
Before we headed over to the BBQ my brother and family were having while his in-laws in town, the folks and I stopped by Sam’s Club to pick up some things. I was chugging along in the electric scooter down the aisle when I lost all muscle control and fell out of the scooter completely onto the concrete floor. My mother and dad were discussing a potential purchase when my mom said she heard a loud thunk.
Admittedly, while this has been the most public instance of a pass out, besides the infamous doctor’s visit when all the staff panicked and an ambulance was called, I’ve had more embarrassing falls at home that I won’t go into right now. I’m trying to cut the pity party off at the pass after all.
After Sam’s Club, a little sore but not completely wrecked, we headed over to my brother’s house. Shortly after hugging my sister-in-law in the kitchen, I passed out on the linoleum floor. My mother, used to this, stepped over me to get things done. While my young niece and nephew have handled my various physical manifestations of illness with aplomb, I remember feeling horrified by the thought of them finding me flat on my back in their kitchen. A pillow was found, and my mom and sister-in-law discussed how they were going to arrange me for the rest of the cook out.
A couple pass-outs later, I was sitting in a lounge chair, surrounded by pillows. I felt terrible when my nephew wanted to play catch with the soccer ball. I did as best I could from the chair, but his other grandmother and my brother had to fill in for me. I maneuvered my young niece around so she could catch all the action. And then, feeling like an elderly person who has just consumed a very large meal at the end of the day, passed out with my chin to my chest a couple times. Fortunately, I come from a family that doesn’t make too big a deal out of little things like that.
My cat even ignores me initially if he thinks something mild is going on, continuing his bathing or playing with his toys. However, when a dystonia episode is very severe or when my pass-outs are extreme and go on too long, as they have this past week, my boy literally yells whenever I fall out, in an attempt to get the attention of my parents. He proceeds to try to lick me awake, then drapes himself across my body until the uncontrollable movements have ceased. He may not be a German Shepherd or Golden Retriever, but he’s definitely my service animal.
Anyway, back to my low moment on the carpet floor. Everything came crashing down on me. The dream job I was forced to go on leave from in March when I began four months of chemo. There were the different diagnoses and the proposed treatments that were dangled like sweet carrots in front of me before later being dismissed. A relationship completely obliterated. Through all of this, I somehow managed to mostly keep it together. I’d find a treatment that would work, and eventually I’d go back to a job I loved.
That is until there simply wasn’t enough time for me to get well before they needed to find a permanent replacement. As practical as it is, as much as it makes sense from a business standpoint, it still stings. There goes another piece of my former identity.
A couple months ago, I also got a rare diagnosis of secondary hypothyroidism, which basically means my pituitary gland is on strike and won’t produce certain hormones like it’s supposed to. I had been diagnosed with hypothyroidism and other endocrine abnormalities five years ago and fixed them, so I figured I knew how to go about it again.
I began supplementing by daily selenium intake by eating a Brazil nut a day. I went back to the food sensitivity diet that transformed my life back then, going gluten-free and dairy-free. Not being able to cook this time—standing in the kitchen for more than a couple minutes usually winds up with me on the floor convulsing—so I am only able to be strict about my diet three-quarters of time. I exercise when I am physically am able, sometimes overdoing it, typical me.
The recent levels are also severe enough to require medication, not just supplementation. Yet, after a couple months of all these changes, my thyroid is still off-kilter. One level goes up, almost too high, while another goes too low.
Add to that, the continued weaning off of prednisone, which brings back all the lovely skin reactions of my particular autoimmune disease. Rashes, face feels like it’s constantly on fire, hives itching like crazy, getting colds again so easily, being drained down and having a hard time staying motivated.
I don’t want to dig myself deep in this hole.
My friends and family patted me on the back for having such a great attitude through my struggles. But as the months went by, and I lost the entire summer, something inside me changed and twisted. Losing much of my physical connection to the outside world, sometimes deliberately, sometimes painfully not, I began to have the feeling that this was just not fair.
I don’t often allow myself to have a pity party. Even through—especially through—the rougher days of physical illness, my philosophy has been to try to “always look on the bright side of life,” to quote from the song in Monty Python’s Life of Brian. Usually this works really well for me, perhaps because I am a practical optimist. I realize some limitations are for my safety, like not driving when I can have what are kissing cousins to seizures at any time.
Other limitations are meant to be broken. When a doctor says, “You can’t,” my heart says, “You want to make a bet?”
Which is how I miraculously found myself working at least 60 hours a week at my dream job after about nine months of being completely disabled, several of those months largely bedridden. My passion and adrenaline overrode whatever physical limitations I had, enough so that I made adjustments that worked for me. I had my chauffeur, my dad—both parents an amazing support team that allowed me to do what I did. I had a flexible enough job that allowed me to do most of my work when I felt my strongest.
Unfortunately, however, any body will feel the brunt of burning the candle from both ends long enough. My particularly body, whose systems break down to the extreme when it doesn’t get enough rest or sleep and stays in a high stress condition (even positive stress) without enough downtime, started to crash big time after almost six months.
As much as I love my job, I have to also really love myself. This time taught me so much about the importance of having a work-life balance. Of finding (or creating) a job you love that allows you follow your passions, encourages you to love yourself and to share your love and passions with others. Of finding time for friends, family and loving relationships. I’ve lost so much. I don’t want to lose even more.
I have to believe this is all for greater good. My challenges are only helping me to better share my experiences with others who are going through or will go through some of the same. Perhaps this is what is most my life’s purpose.
A few days ago I wrote this very short poem:
Taking it minute by minute
While writing it, I came across a TED talk by dystonia conqueror and advocate Rogers Hartmann, reminding me why, just why, me.