By Mary Holland Woodward
As a baby, I could have died from my medical condition which was not well-understood.
Classic Galactosemia had already taken the lives of most – if not all – similarly-diagnosed babies before me.
Classic Galactosemia primarily affects the health of the liver and kidneys.
Mom and Dad were told early-on that, even if I lived beyond a few months or years, I would be severely developmentally disabled. After 47 years in this life, I can tell you, “I’m not!”
In my own non-technical lingo, here’s what I’ve learned so far about Galactosemia:
It’s the simple sugar galactose that is the culprit. I don’t have the enzyme GALT (galactose-1-phosphate uridyl transferase) that is present in most healthy bodies to naturally convert the simple sugar galactose into the simple sugar glucose.
I grew-up knowing that I should never eat anything containing the simple-sugar lactose. I could never eat chocolate!
When I was young, once-in-a-while I would arrive home from a friend’s house and Mom would greet me with trepidation.
“Mary?” Mom would say gently but directly.
“Did you eat some chocolate today?”
“No-o-o,” was my usual response while I tried to wipe the chocolate remnants from around my mouth. Mom would help me clean it off while reminding me plainly and clearly how bad certain foods were for my health. She would tell me that chocolate is like poison. I didn’t want to hear it. I didn’t want it to be true, but even then I knew it was.
As soon as the doctors put me on a corn-syrup-based formula known as Nutramigen, I started growing like a healthy weed.
One common side-effect of Galactosemia is the development of cataracts in the eyes. Mine developed so early as a baby, that they may be the primary cause of a second condition from which I suffer, called Prosopagnosia, or face-blindness. Prosopagnosia affects my ability to envision people’s faces. Even when I’m looking at anyone’s face with my eyes, my mind cannot visualize what it looks like. Faces are little-more than a set of similar features that resemble any and all other faces that I’ve ever seen; faces look blank with no distinguishable characteristics.
As an inherently shy and rather insecure child, I never told anyone about my inability to remember faces. I assumed the problem was all my fault, and avoided eye-contact or small-talk whenever possible. Even though my sisters and I were raised by two loving parents, what could Mom and Dad possibly do for me, other than suggest I pay closer attention to people’s faces?
When I was of school age, sometimes the grown-ups towering over me would offer a gentle smile and “Hello!” Some of them even knew me by name. Yet they all looked basically the same – big and impossible to tell apart. I rarely initiated conversations for fear that that was the same person I’d just talked to 20 seconds before. How embarrassing would that be? I thought.
I was 8 and cautiously excited as I entered my 3rd grade classroom for the first time. It was a whole new environment and whole new school, as we had just moved. That I didn’t know anyone yet brought me comfort because no one would have expected me to recognize them right away. This time I would really take note of the details of the other kids’ faces. I discreetly took notes on a pad of paper and hid them under my hand so as to not offend anyone (or embarrass myself) with my choice of adjectives. I made notes like:
Doris, tall, long face, skinny lips
Bertha, tall, round face, chubby cheeks
Tracey, tall, wears glasses
Rene, cute boy, French
Being short myself, however, meant that almost everyone seemed tall by comparison. Just when I thought I had some faces pegged, they would leave my line of vision for a few seconds, then be unfamiliar again. I was always surprised as I re-read my notes and compared their faces to what I’d written.
“Oh, that’s what I meant by Doris, long face,” I would remind myself. It was as if I were seeing her again for the first time.
After days and weeks, my efforts seemed hopeless. I resorted back to memorizing people’s clothes, or hair (things that could – and usually did – change from day to day). I was thrilled to meet anyone with a limp or tick or obtrusive birthmark. To me these were wonderful permanent name tags.
It wasn’t until I was in my mid to late twenties that my neurologist – at the time – diagnosed my medical dilemma. He hypothesized that at an age when most babies are learning face recognition, my cataracts clouded my vision thus negating this part of my learning process.
Two years after our move, our family relocated once more. My world became topsy-turvy with yet a third unusual medical condition!
I was sitting on my bed (probably listening to an 8-track of McCartney and Wings), when a strange phenomenon materialized. I became disoriented. I didn’t feel dizzy or nauseous or anything like that, but was experiencing some sort of optical illusion. My room was suddenly unfamiliar!
I looked toward my corner windows. From my vantage point I could see tree tops against clear blue skies with white fluffy clouds. Nothing unusual there. Yet – different somehow.
Imagine if you will, that the picture below is a life-sized maze. You see it as two faces in profile. Now imagine that you enter the maze via the neck on the face to the left. As you move through the maze, your perception changes. You are no longer dealing with two faces, but rather with the vase in the centre. Although nothing has moved, you see your surroundings differently.
Your preconceived plan of following the line up the face toward the nose is no longer relevant. You are at this moment, lost! That was how I felt in my own bedroom – lost. I shook my head; a feeble attempt to correct my perception. Then I tried to reacquaint myself with the room. The door hadn’t moved – it was still behind me and to the left as I sat on the bed.
I returned the chocolate bar on which I’d been binging, to my secret stash, and hesitantly navigated my way downstairs. I was scared, and angry at God for making (or should I say letting) the whole house “change”.
I’m just imagining things, I told myself trying to be calm. But I was aware of my heart pounding, and my fingers starting to tingle. Soon the sensation would travel through my hands and arms, thus numbing them. Moments later, just as suddenly as my world had ‘flipped’, it all ‘flopped’ back to the old familiar way.
Mom was in the living room reading a library book. I wanted to tell her what had happened, but I didn’t know how to explain it. Here I was, a self-conscious pre-teen, faced with an unreal reality. Even if I tried to explain it, who would understand? If this were a normal part of life, surely Mom and Dad would’ve warned me about it by now.
In fact, I was angry and frustrated that neither my parents nor any of my sisters had educated me on this phenomenon yet. What were they waiting for? Or, if they really knew nothing about it, maybe I was unfixable? Or a freak of nature?
I didn’t tell Mom. I didn’t tell Dad either, and not even my big sisters. In fact I didn’t tell anyone for about two years! I prayed that this would turn out to be a onetime only phenomenon, or a daydream. But it wasn’t.
As the weeks passed, the switch occurred at least once or twice every day, lasting anywhere from a few minutes to several hours. I worried that this was just the beginning … that I would start seeing my surroundings in three different ways; or four. Maybe a dozen; or hundreds of unfamiliar ways!
Sometimes I would walk blindly down hallways, then hear a friend call to me something like, “Where are you going? I thought you said you were going to the bathroom,” or “… to Mr. A’s room.”
“Oh, whoops!” I would retort, then lie that I was just looking for something which I had lost. Sometimes I would get tongue-tied and say something incoherent. When people laughed at my odd behaviour, I nearly died of embarrassment. Of course I was really just trying to become as familiar with my new view of the surroundings as I was with the old view.
I don’t know if my chocolate binges were meant to mask my insecurities during tough times. I also don’t know how sick I would’ve had to make myself before I would have stopped indulging. Sometimes I ate my food of choice until I became short-of-breath or vomited. Once in a blue moon I threw the uneaten portion of candy into a dumpster, but I usually just held onto it until the discomfort went away.
It was during this time of insecurity that I went with my school class to a campsite in British Columbia called Loon Lake. It was beautiful there: the sights and smells of the trees, the mirror-like lake, and the wildlife. The haunting sounds of loons at night. This could’ve been paradise were I not extremely home-sick and secretly struggling with the flip-flopping of one reality to another in brand-new surroundings. My perception refused to stay-put long enough to allow any memorization on my part.
To make matters worse, the counsellors had to break-up cabin-mates and have us work with kids from other schools during our daytime wilderness activities. They were teaching us to expand our social skills. Now I was lost geographically AND socially.
I would take careful note of what the foot paths looked like as a reference point or draw simple line maps, (similar to my face-remembering lists only two or three years earlier). Sometimes I would even poke a stick in the ground as a marker, hoping no one would kick it down. But when I would try to retrace my steps to our meeting place, I would ultimately stand off to the side of any path and try to be nonchalant while surveying the grounds for someone wearing a familiar pair of shoes or hat.
It suffices to say that sometimes I just couldn’t peg my partners at all, and would have to wait for them to find me. If they didn’t find me, I apologized over dinner for not meeting them. I covered my embarrassment by claiming that I’d forgotten where we’d agreed to meet. (In a sense, that was actually true).
I made it through camp week, but was ashamed and frustrated at myself. As the years passed, I was bent on finding-out out what was wrong with me.
I wondered if it was a simple case of light and shadows playing tricks on my eyes. When I was home alone, sometimes I repositioned floor and table lamps throughout the house. I even removed lamp shades and switched the bulbs’ wattage in an effort to cause a change in a controlled environment.
But all of my attempts were futile. There seemed to be no rhyme or reason to when switches would occur.
But as I grew, I became accustomed to living with – and even expecting this newest secret anomaly every day. I also came to realize that I preferred one reality over the other – the newer less-familiar way, in fact.
I’d long-since given-up feeling angry about the difficulties in my life, though was often still frustrated – not to mention curious – to learn more about them.
It was late afternoon during my 12th or 13th year when I came downstairs and found Mom and Dad watching TV. They were more than happy to turn the set off when I said, “Something weird is happening to me.” They listened carefully and asked all the right questions; How often does this happen? What does it feel like? Is it happening right now?
There had never been any reason for me to doubt their compassion and support. They got me in right away to see our family doctor. He sent us to a specialist who, as I recall, didn’t seem perplexed at all. I started to describe my problem to him when he said, “Sounds like Jamais Vu, a type of Petty Mal.”
“Petty Mal,” he would go on to explain “is a mini seizure.”
I knew the term Deja Vu, the feeling of having already seen or experienced something in the past. Jamais Vu is the opposite; a feeling of never having experienced a place that one has, in fact, experienced.
He prescribed for me a drug called Tegratol. I kid you not, within one day of starting the big white pills, the change stopped completely! The best part of this fix is that the newer way, (my preferred way) I was viewing the world would be the way it stays.
If I was born seeing my surroundings “wrong”, (for lack of a better word), it makes sense to me that Jamais Vu was God’s way of allowing my body to correct the problem.
As for face-blindness, there may never be a cure, but maybe there doesn’t need to be. As an adult I’ve become very adept at recognizing voices, and sensing who is who in my world. I can often deduce who someone is by their stance, gait, or the types of things they do and say.
Where Mom and I were both very shy as children, we each grew to expand our social networks in ways that make us comfortable. For example; at work, sometimes I say, “Hi!” to the same seniors every time I pass him or her in the hallway. So what? This type of scenario no longer embarrasses me.
As biomedical doctors and scientists continue learning more about my conditions – Galactosemia in particular – they have revised my diet-sheets to include, believe-it-or-not, certain types of chocolate – containing 80% or more of the cacao bean.
One might think that I gorge on bitter- or semi- sweet chocolate now that I’m allowed to. But I don’t. Even though these types of chocolate are no longer taboo, what benefit are they to my health? The taste would only recolour my pallet for all other varieties of chocolate.
I’m pleased to say that I’ve been chocolate-free for more than a year. I went cold-turkey like so many smokers and drug addicts before me. 40 years ago, Dad was a smoker. Today I finally understand what he means when he says he still craves one more cigar or pipe. One last dose of chocolate wouldn’t be my last at all. It would only be the first of many more.
So why didn’t I die as a baby? And why didn’t half a life-time of countless chocolate treats cause my kidneys and liver permanent damage? A medical team is working with me today to discover the answers. Perhaps there is a gene in me – as yet undetected – which counters the damage done by Galactosemia. Maybe the cure for this condition exists within my very genetic make-up! The future Daly-Holland-Woodward gene, perhaps?
Mary Holland Woodward Bio:
I am British Columbia born-and-bred, having lived in the cities of North Vancouver, Port Coquitlam, Burnaby, and New Westminster. I also took a one year haitus in Hawaii as a highschool Senior.
I still reside in BC, but now it’s White Rock and South Surrey that I call home, with my wonderful husband, Doug and our three unpredictable young-adult sons, Len, Danny and Scotty.
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