Part One

My name is Laura Quirk. I was diagnosed with multiple sclerosis (MS) in 1988. Although, it is likely that I had the disease for several years without knowing it. Since then, my body has gone on some scary and complicated rides. My mental, emotional, and spiritual states have also been shattered by this disease. But as I have learned—often the hard way—hope is sometimes all any of us have left. I want to tell you about my journey with MS and what finding hard-fought hope means to me.

The Early Years

As hard as she is to talk about, or sometimes even think about, I must begin my story with my mother. She also had MS. I was six months old when she got sick but I was eight years old when she was officially diagnosed. By that time she had difficulty walking, and my parents told me she’d broken her leg. I was not convinced. She shuffled when she walked, and her speech was hard to understand; even I knew that wasn’t what having a broken bone looked like. She was also blind in one eye.

Back then, diagnosis was a long and arduous process that included spinal taps and observation to see what sorts of symptoms a person experienced.  I pestered my mother to tell me the truth until she finally told me she had MS. Of course, I didn’t know what MS meant (but then, almost no one did at that time). Back then, diagnosis was a long and arduous process that included spinal taps and observation to see what sorts of symptoms a person experienced—because the symptoms varied from person to person, it was often years before an official diagnosis could be made.

Some of my earliest memories of my mother are her sick in bed and needing care most of the time. At eight years of age, I was taken out of school for three weeks to look after my mother. My father went to work, and I presume that my sister (who was four years older than me) could not miss school because it would be harder to catch up in grade seven than it was in grade three, making me the logical choice. In hindsight, I have often wondered why we didn’t have a nurse or PSW come to the house to take care of her, but for whatever reason, that didn’t happen. I remember trying to clean, cook, and grocery shopping. I remember bringing the groceries home on the bus one day in those old paper bags that didn’t have handles—I wasn’t strong enough to carry them. I recall sitting on the sidewalk crying as I tried to pick up the bags and carry them home. Eventually, a bus driver parked the bus and helped me carry the bags to my house. I wish I knew who he was, as I have often thought of him with gratitude and wished I could thank him for his kindness.

The Road to Diagnosis

I was always told that MS was not genetic and that I had no chance of getting it. Imagine my surprise when a doctor hinted that my vision loss, at age 23, might be because of MS. At that time I was walking normally, so how could MS even be an option? I didn’t shuffle like my mother did. I was in every other way “normal.” I was sure they were wrong, particularly when my vision improved and I could see as I had before. It was only when I lost my vision again six months later that the doctors began looking for answers and I was sent to see a neurologist. That doctor immediately performed a spinal tap. But because I wasn’t in an MS attack at the time, it came back negative. So, I spent the next six months being poked and prodded and even given electric shocks to see how the messages travelled through my body. None of the tests were conclusive so they sent me to London, Ontario, to the MS clinic there. The neurologist read my chart and told me that I was “classic MS,” but he did an MRI anyway, just to check. Sure enough, the doctor confirmed that day that I had MS.

You might be wondering what MS is. I am not a medical doctor, but I have lived with the disease for more than half my life, so I believe I can speak to the basics without misleading you. MS is a disease of the central nervous system, or the brain and the spinal cord. This system includes the complex network of nerve cells responsible for sending, receiving, and interpreting information from all parts of the body. MS attacks the myelin that surrounds the nerve. The myelin’s job is to help transmit messages along the nerves from the brain to your arms, legs, eyes, mouth, organs, etc. Myelin damage can occur anywhere in the spinal cord or brain, which is why MS symptoms vary so much from person to person. Typical symptoms include loss of balance, muscle spasms, weakness, tremors, bowel and bladder problems, vision loss, hearing loss, facial pain, brain issues such as memory loss, sexual issues, and problems with speaking and swallowing. 

No matter what symptoms a person with MS might have, the one constant is fatigue. Of course, everyone experiences fatigue, but MS comes with a unique form referred to as nerve fibre fatigue. Essentially, this means that the messages are working hard to get from the brain to somewhere in the body, but because of the damage caused by MS, the messages can’t get where they are trying to go, which causes parts of the body to shut down. This fatigue can manifest as (temporary) paralysis for some. For me, it’s more like being tired to the core of my being, or “bone tired.” For others, it may just mean they need a nap.

To simplify the story of MS and myelin, let me give you an analogy. Myelin is like a big sleeping bag that is cuddling a strong fibre (the nerve). MS comes in with a big pair of scissors and cuts the sleeping bag, sometimes with only a small nick but other times shredding the sleeping bag in the process. In people with MS, the myelin spontaneously fixes itself (sometimes fully) until the age of about twenty to twenty-five. As a person ages, their body is not as capable of fixing the problem. So, MS diagnosis is usually between the ages of 20 and 40.

Going back to my analogy, when the body begins to heal after an MS attack the body starts to sew up the tears in the myelin sleeping bag. Sometimes the repair is so good that the person is almost like they were before, with barely perceptible changes in their body. But sometimes the sewing job leaves small holes or even gaping holes in the sleeping bag, leaving the nerve unprotected. So, the messages transmitted along the nerve are slowed down or interrupted—the result is changes in ability, commonly known as an attack (or an exacerbation).

In medical terms, a buildup of scarring on the myelin is known as sclerosis. When there are many such sites, it is known as multiple sclerosis. Damage to the myelin can be on a spectrum from permanent to medium to minimal, with minimal damage leaving no obvious signs of the disease at all.

MS can attack the body in a number of ways. The most common is with the arms and legs—causing anything from mild numbness to paralysis. About fifty percent of people with MS have numbness in their body, usually the arms and legs, and about fifty percent have pain in those same areas. I have both. The second most common type of MS attack is in the brain stem-cerebellar area, making up approximately thirty-five percent of all relapses. I have had many attacks that come from this area in the brain. The most common symptoms from these attacks are speech difficulties, compromised balance, and vision issues. You can also experience acute pain in the ear, swallowing disturbances (which can lead to choking) and trouble with facial muscles and nerves.

“But You Look Normal”

From my story so far, it may be obvious why its difficult for people in my life to understand MS. You may have seen me last week and I looked perfectly “normal” but today I look and act differently. The difference might be that I’m using a wheelchair, or a scooter, though sometimes it might be a cane. Sometimes I have trouble seeing, sometimes breathing is a concern, sometimes my ability to speak is challenged, sometimes I’ve difficulty using my hands; sometimes I even have trouble peeing. In other words, MS has impacted me from the top of my head to the bottom of my toes and almost everything in between. The other difficulty is that the average length of an MS “attack” is between 8 and 24 weeks. At one time I had between three and four attacks a year, which mean I was always in an attack.

I am also not an average person with MS, which is one of the biggest challenges of the disease. Some people have only one or two symptoms in their entire life, having what’s known as a benign form of the disease. While others have permanent damage and are identified as “chronic progressive” patients. The most common type of MS called the “relapsing/remitting” type, which means that the disease comes and goes. When I was first diagnosed, I went steadily downhill with chronic progressive MS; after about five years, I was “upgraded” to a relapsing-remitting type. It must have been odd for people to see me in a wheelchair one time and the next time walking confidently down the street. Or remember having a normal conversation and then finding they could not understand my speech at all.

But perhaps the most frustrating aspect of MS is that many of the symptoms are silent. When you look at me, I may seem “normal” (oh, how I hate that word!), but I may not be able to see, or to pee, or even breathe properly (I have what’s known as MS-induced asthma). Or I may be experiencing intense pain or numbness in my body. All these symptoms are “silent” to the observer, but not to me. So, when I heard people say something like, “oh but you look so good,” I would be screaming inside that I was anything but “good.” Yet it was so much “easier” to just smile and say, “thank you.”

Politely they inquire,

“How are you?”

Politely I answer,

“Fine, thank you.”

But inside I scream,

“I AM NOT FINE!”

To them I seem well enough,

But can’t they see it?

The inner struggles,

The uncontrollable shaking,

The weakness, the pain,

The numbness, the fatigue,

The feeling of helplessness,

The fear…

It occurs to me

That my own half-truths,

And my need to be independent

And strong,

Silence me.

Okay, starting today,

As my own acceptance

And understanding grow,

I will attempt to share my feelings,

So that my silent screams

Can be heard.

— Laura Quirk

 

My Mother and MS

My mother, from what I have been told, was extremely bright. She had a terrific sense of humour, and she held a master’s degree in psychology. She actually ran the psychology department at a hospital near where I grew up in Toronto. When she first had MS, I gather they thought she had some odd, transitory paralysis and she was expected to make a full recovery. But, as it turns out, it is very common for women to have MS symptoms crop up for the first time after they have given birth—which probably explains why I never knew a healthy or “normal” mother. For as long as I can remember, she was strange to me. She didn’t walk or speak or even make dinner like my friends’ mothers did. And perhaps most importantly, one of her symptoms was memory issues, so she often had no idea who my father, my sister, or I were.

I remember that when my sister and I would go to school, for instance, she would sometimes call a locksmith to change the locks. She couldn’t figure out what these small strangers were doing in her house. She also did extraordinary things like introduce herself to new neighbours and ask them to keep our good silverware because she didn’t trust us and was sure that we would steal it. Yes, that made for particularly awkward moments when these confused neighbours would quietly go to my father and return the silverware. To be honest, my mother embarrassed and perplexed me on a regular basis.

It was not a surprise when my mother sued my father for divorce when I was twelve and the three of us (my father, sister, and I) moved out of the family home. We all thought it was best because she was more and more lost and confused and her turmoil made the three of us feel like we didn’t know which way was up. You might think us heartless for leaving her. But from my perspective as a kid, it was just too hard to understand why she didn’t know who I was. After all, I was her daughter. In truth, I thought sometimes she was just being mean and pretending she didn’t know who I was. It was only when I became an adult and began to unravel what it all meant that I found some compassion for her and realized how scary it must have been for her. Perhaps you can better appreciate my horror when I was told I had MS. I thought that if I had the same disease, I must be a genetic reprint of my mother and would eventually forget those I love and worse, I’d hurt them along the way.

When There Is No Fight Left

Interestingly, I have since been told that my diagnosing neurologist labelled me as “together” and “able to handle it.” That couldn’t have been further from the truth. After my diagnosis, I was suicidal for the one and only time in my life. I began to drive around wondering how I could crash my car without hurting anyone else. I would look at a bridge and think “what about there?” Or I’d see the wall of a shopping mall and think “how about there?” Each time, I stopped myself after thinking, “what if that bridge gets knocked down?” Or “what if that wall caved in and it hurt people inside the building?”

I was just so deeply sad that living didn’t seem like a viable option. And I was determined not to hurt the people that I loved by forgetting who they were. I just couldn’t do that to them. Fortunately, some voice inside me stopped me from crashing my car. But I came close, many times. I was in a very dark place. So dark that I felt like I was in a deep well without light. I did find myself looking for light, somewhere, anywhere. But for a number of years I just couldn’t see it. In hindsight, it is interesting to me that while I couldn’t see any light in my very dark place, I somehow still knew it was there. I just had no idea where or how to find it.

There is no fight left.

There is only sadness.

I am profoundly, deeply

And unmistakably sad.

This is not depression.

It is a kind of quiet unfathomable grief.

 

I am passed outward tears now

But inside I weep still.

It doesn’t stop the pain

Or change the feelings.

It’s almost as if my sadness

Is the residue that is left

After the storms of pain

Have subsided.

 

Nowadays, people look at me

And think I am coping well.

They think that I am strong.

The truth is

There is only sadness

And there’s no fight left.

— Laura Quirk