Part Two

The Turning Point

Tired of being tired, saddened by always feeling so sad, I sought the help of a counsellor. I had to work hard to understand that I was not a genetic reprint of my mother, although, as it turns out, we had the same first symptoms as one another. My life-saving counsellor suggested that I try to track down my mother’s neurologist and ask him about her early years with MS. By then, I had had no contact with my mother for a number of years. It was just too hard to see her when she had no idea she even had a daughter—her memory had deteriorated permanently by then, and seeing her was like watching the scariest horror movie I could imagine come to life before my eyes. So, for my own sanity, I avoided seeing her.

When I finally found her neurologist—and explained that I had MS, I asked if he could shed any light on whether I would lose my memory. He bluntly asked me, “Are you an alcoholic?” I remember being stunned by the question, then answering “no.” He then said, “Your mother was an alcoholic and essentially pickled her own brain. So, if you’re not an alcoholic, you’ll probably be fine.”

It was an oddly comforting conversation. I did know about my mother’s alcohol abuse at a very young age. I had grown up uninterested in being drunk or in using recreational drugs. I enjoyed wine and beer but did not drink hard liquor and I usually stopped drinking even before I was tipsy, never mind getting drunk. But it had not occurred to me that MS and alcohol don’t mix. When I hung up, I realized that the mental deficit my mother had was not necessarily a foregone conclusion for me as well. So, I decided then and there to go on living, but to hold in reserve suicide as an option if I ever believed I was heading down my mother’s path. Before that happened (if it ever did), I wanted to embrace life, seize the day, and live for each day as it came.

The First Steps in Healing

From that point on, I began searching hard for the light in the darkness. I had been told by doctors that there was no hope for MS. They had no cures, and all they could offer me were experimental drugs. I realized early on that those experimental drugs had to be tested on real people with MS, so I agreed to take the drugs, believing that if there was any hope it would be found in the doctor-gods who prescribed them.

I began to think “I am MS. MS is me”—which by extension, meant nothing was ever going to be normal again.  Like so many people with chronic illnesses, I began to identify myself with this strange body of mine that was in constant flux. I quickly learned that I couldn’t count on this body that was no longer doing what I told it to. I began to think “I am MS. MS is me”—which by extension, meant nothing was ever going to be normal again. It was a strange process of starting to believe that my physical body was the most important part of who I am. I learned that people wanted a healthy Laura. For example, some friends suggested that if I couldn’t play tennis with them anymore then perhaps we had nothing in common.

And so I let the doctors give me the experimental drugs, believing that they knew my body better than I knew it myself. In fact, one early neurologist told me, “You are not as well as you think you are. I have tests to prove it.” Although one small part of me believed him, there was another part ready to fight; I answered him, “You’re wrong. I am exactly as well as I think I am. No better and no worse.” He was blatantly skeptical and let it show. I remember thinking, “I’m not an idiot.” I knew I had the disease, but I also knew that I was exactly as well as I thought I was. Sadly, it didn’t stop there. He told me to, “go home and eat all the chocolate you want, don’t bother exercising, you’re going to die young anyway.” In spite of those words, I knew I wasn’t finished with life, and I was not going down without a fight.

I have no idea what sort of motivation the doctor thought he was providing me in that exchange, but what that did for me is provide the spark that was missing. I did begin to see the light at the end of the tunnel, so to speak. I began saying to myself that if I could afford it, I would try anything to get healthy. And by that I don’t just mean “afford it” financially. Bee stings were suggested as one method to control pain. Apparently one needed ten bee stings per day to get pain relief. I remember thinking I couldn’t “afford” that emotionally, so I said no to that one. Otherwise, I began seeking out all kinds of non-chemical, non-invasive therapies that might give me pain or symptomatic relief.

Finding My Voice

One of the dangerous symptoms of MS happens when my brain stem is swollen, which impacts my speech. It is dangerous because, from what I understand, the brain stem is in a small space and when becomes inflamed there is only so much room for swelling. Someone once explained that it was like the brain stem was a balloon that was being pumped up in a small box. After a while, it can go “pop.” The effect of this swelling for me was difficulty swallowing and difficulty in speaking clearly. I was hospitalized to receive very high doses of prednisone, in intravenous (IV) form. The neurologist said they didn’t know if I was going to make it because they couldn’t get the brain stem swelling to stop or slow down. I remember grabbing a piece of paper and writing “I am going to prove you wrong.” Obviously, I did.

The next time I had a problem with my speech, I decided to seek out the help of a different neurologist. That doctor told me that my speech difficulties were all “in my head.” In other words, it was psychosomatic. You might imagine, my first thought was, “Is it time to kill myself? Am I going crazy like my mother?” But I decided to go to a speech pathologist to find out if my speech issues were really “all in my head.”

It wasn’t. She told me that my speech was only 17% intelligible because my palette was not lifting, my esophagus wasn’t closing properly and the air was therefore coming out my nose (and not my mouth). My speech sounded similar to that of some deaf speakers, even to my own ears. And there was a danger of choking to death if I wasn’t careful.

It was a very strange world for me. I had a brain full of ideas and thoughts and little way to express myself. I used even more extravagant gestures than I normally do, and I took to writing things down. My hands were not working as well as I wanted and so my handwriting was slower and more laboured than my “normal.” It was an intensely private and personal place to be. Working so hard to communicate led me to I start asking myself what I had been saying that I shouldn’t have said, and perhaps more importantly, what I had not said that I needed to say. Looking back, I know that was when I promised myself that I would no longer be silent. My silences had not saved me from anything.

Being silent was part of being the “lady” my grandmother always wanted me to be. She was one who always wore dresses and pearls and had visions of me doing the same. I could not be the silent lady she wanted, as I could not face the possibility of dying without having spoken my truth. I learned that while I never intend or desire to hurt anyone, I also need to be as truthful as any situation will allow. I have since been told by the closest and dearest people in my life that I am sometimes very blunt and sometimes it hurts, but that they never wonder where they stand with me. It is often a challenging balance for me between being honest when situations are delicate and recognizing when I need to hold back. Again, those who love me know that I am often the “bull in a china shop,” but they also know I never mean to be hurtful.

Art and Archaeology

Around this same time, a different, well-meaning neurologist (who confirmed that the speech issue was also not “in my head”) told me that I needed to think about what I wanted to do with my life because, he said, “No one will hire you.” (Looking back, I honestly do believe he was trying to be helpful.) I was still young and the thought of dying young and never working again did not sit well with me. So, I decided to go back to university.

When I left home at 17 years of age, years before my diagnosis, I had planned to attend university and work at the same time. I had enough money saved for one year, so I started a psychology program at the University of Waterloo. As it turned out, I loved every course I was taking except psychology and I couldn’t afford to go on, so I quit school to work full-time at an art gallery. I quickly discovered that I loved the art world and I decided to buy a small art gallery rather than return to university. I reasoned that I could always go back to school but wouldn’t have another opportunity to own an art gallery?

My first career, therefore, was as an art gallery owner. I loved it. Along the way I did take whatever university courses interested me, at night, but mostly I had thoughts of someday having a second gallery and of living my life in the art world. Then MS struck.

Let’s face it, it is hard to see artwork when you’re blind or frame pictures when your hands aren’t working. And when the speech problems hit me hard after eight years of owning the gallery, I realized I had to give it up. There is more to the story than that, but it was then that I decided to go back to university and do something with my mind, because so far, it was the only part of my body that had not let me down.

It struck me as odd, even at the time, that I elected to study the one thing that makes no practical sense for a person with MS—I decided to study archaeology. It had long been a passion of mine and one that I was determined to master. I knew that there are two different types of archaeologists: There are the dirt archaeologists, who look for evidence in the ground and there are the so-called armchair archaeologists who study and assess the artifacts that others dig up. I thought I could become the latter type.

While working on my undergraduate degree, I had trouble walking, seeing, talking, and moving my hands, and I was experiencing extreme fatigue. Despite that, I won the gold medal for arts and science the year I graduated. Not surprisingly, what that taught me was that I could do this. But I also knew I needed more than an undergraduate degree to do what I dreamed of doing—teaching historic archaeology. I knew I needed to keep going and complete a doctorate degree. I wasn’t sure my body would let me, but I knew if I didn’t try, I’d never know.

My First Master’s

I applied to the University of Western Ontario to do a master’s degree in anthropology and was accepted into the program. It was a two-year program and I drove from Waterloo to London on class days. It took me four years because of my health, but I did it.

In addition to concerns I might have had about the physical demands of MS, after I finished my master’s I had other concerns about my future. I began reflecting on whether I really thought I’d get a job teaching archaeology. Because the field is very small in Ontario, I realized that my chances were slim. But I did think there was a greater chance I would be able to teach history, so I decided to change directions and do a second master’s, this time in history.

At the same time, I realized that ever since my startling diagnosis I had been grieving the loss of the body I had known. While I was busy in school, I had not yet been able to work through the grief process and allow myself time to move out of that dark place and into the dawn of each new day. I realized I had been feeling sorry for myself and it had been getting in the way of living. And like so many in my position, no one had told me that what I was feeling was grief or that it was okay to grieve. I thought I should just “snap out of it” and get on with it. Isn’t it funny how hard we are on ourselves? I had to learn to face it and let it go. So, I began to do something that I still do to this day when a new symptom shows itself, or an old one revisits again. I give myself one day to feel it: to wallow in self-pity and to recognize that it is not fair, it is not right, and it’s not okay. But when that one day is over, I tell myself, “Enough, no more.” I make myself think about today, this moment, and living.

I have just experienced quiet moments of healing.

It began with my feet.

They were rough and tired of their own awkwardness

But I soothed their roughness.

As I thought of how often I have stumbled

And the life lessons I have learned

Just because my feet were awkward,

I realized how well my feet have led me.

 

I next thought of my hands

And how their lack of strength betrays me,

How painful and awkward they can be.

But then I thought of how creative they are,

How gentle, how tender.

Then I realized I saw my hands as strong.

 

I next thought of my vision

And of how terrifying the darkness was.

Then I thought of all the things

I now see clearly.

I see how lucky I am.

I see myself as whole, not broken.

 

And then I realized

That I am strong

And proud to follow the path

That my feet are leading so well

— Laura Quirk 

My Second Master’s

It was during the year of my second master’s that I began saying a mantra out loud, every time I thought of it. I would say, “I feel healthy. I feel happy. I feel terrific.” I admit, it was sometimes said through gritted teeth, but I figured that my brain would hear my own words and would begin to believe them. It is something that I still say today, although not as often through gritted teeth. I also sought out massage for my spastic muscles, physiotherapy to help me walk again, a brace for my left hand that was so curled up my fingernails would literally cut my palm.
I also went to energy healers to help the parts I couldn’t touch. I remember one very helpful healer telling me that I was viewing my body as the most important part of myself. He wasn’t wrong. I had been paying my physical body so much attention that I hadn’t given myself time to look at the spiritual, mental, or emotional parts of myself. I began to realize that they were all equally important and that I had been privileging the thing that was yelling the loudest but that was not necessarily the way to be healthy.

It was also during this time that I started a new experimental drug that was administered by daily injections. By then I realized that a balanced approach was best for me, and it was time to reintroduce Western medicine into my goal of getting healthier. I was still interested in trying anything, as long as I could afford it, financially, or emotionally. (Ironically, there was a time when I said to myself, “At least I don’t have diabetes because I don’t think I could inject myself every day.”)

In the end, it wasn’t self-injection that was the problem, it was just the wrong drug. I kept having what was referred to as a “911 response.” After I injected, I would literally drop to my knees, gasping for breath, and the pain around my chest was crushing. This always lasted about 20 minutes. I never did call 911, but I did finally say—after twelve such episodes—that I could no longer emotionally “afford” this medication. And I gave up again on the idea of Western medication.

The Road to Becoming a Doctor

After my second master’s was completed, I decided to follow a lifelong dream to get my PhD. Again, I wasn’t sure I would be able to do it, but I thought I simply had to try. I was accepted into the Tri-University Doctoral Program in History. This program uses the expertise of the history departments at the University of Waterloo, Wilfrid Laurier University, and the University of Guelph. Rather than graduate from all three universities, candidates graduate from the university where their main advisor works. My main advisor, Dr. Cynthia Comacchio, was at Laurier. I knew from the beginning that she and I would work well together, and more importantly, that she would see me for myself and not for this strange body that I inhabit. I was very fortunate to have found her as a mentor and guide. I am sure my journey would have been very different without her support and encouragement. Thank you, Cindy!

It is always interesting the things that derail you when you least expect it. It was during the early stages of my PhD that I was having increased pain in my body, and it was becoming more and more challenging to do simple tasks like typing (a requirement for papers and proposals within my PhD program). I had, for many years, existed on Tylenol 4s and other pain medications but ultimately stopped them because they made me feel “stoned” all the time and I was still in pain. But that left me with few alternatives.

It is always interesting the things that derail you when you least expect it. The pharmaceutical industry is always coming up with new and different options, but these drugs were increasingly not masking the pain. So, I approached my doctor and asked if she would be willing to prescribe medical marijuana. I had never tried it recreationally, but a friend had given me a pot cookie to try, and it had given me the most pain relief I had had so far. After doing some research, my doctor gave me the prescription, then I had to go to the police to get the legal license. The process struck me as extremely odd. At this time, possessing pot was legal with my license, buying pot was still illegal.

I didn’t like the idea of buying through an illegal dealer, so I ordered marijuana from the government instead. When my order arrived, I was slightly surprised to receive a large box, within which I found a slightly smaller box, then a slightly smaller box again, and finally a wee little envelope that contained some seeds and no instructions. What did I know about the growing and harvesting of pot? Nothing! I did plant them but then I found out that I wouldn’t be able to harvest the plants for four to five months, so I turned to my friends in search of anyone with organic pot.

My doctor had agreed to prescribe marijuana only if I promised not to smoke it, since I had MS-induced asthma. I planned to bake cookies. I eventually found someone who said her pot was organic. Soon, I was eating a pot cookie every other night at bedtime. I slept fairly well but didn’t love how the drug made my body feel. Over time, I developed some odd symptoms, but I wasn’t used to pot so I didn’t know what I was feeling was a stronger high or something else.

Long story short, four months later, I went to bed after eating my pot cookie and suddenly went into convulsions. It truly was the oddest thing I’ve ever known: My body was involuntarily twitching and flipping. I had the oddest feeling that I was not really experiencing my own body but watching someone else going through it.

I finally got the attention of my housemates, who called 9-1-1. It took almost two hours for the ambulance to arrive, which I have always assumed was because marijuana was mentioned in the initial call. The attendants were nonchalant, until they took my blood pressure and realized it was dangerously high. They whisked me off to the hospital, did some tests, and it was discovered that I had formaldehyde poisoning. The doctors determined I had all the symptoms of poisoning, except coma and death. It took about two weeks for the convulsions to fully stop.

It was a very difficult time; needless to say, I stopped taking pot cookies immediately. I found out that the grower of the pot didn’t realize that if she sprayed her plants with insecticide, which was 99% formaldehyde, that the pot wasn’t organic. As you might imagine, I was genuinely perplexed, and I remember asking “what exactly do you think organic means?” I never did receive a satisfactory answer. Ironically, I found out that had I smoked the pot, it would have burned off the formaldehyde but by eating it, it was potentially lethal.

Not long after that, my neurologist told me about a new pain medication that was a neuropathic pain reliever. I tried a sample of the drug and it worked. I have been taking it ever since. I also began taking new medications for spasticity and for asthma. I felt like a walking, legal, pharmaceutical experiment.