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Of Hospitals Old and New

I don’t know how my mother did it. Holding me, a six month old baby, with the help of a nurse, while yet another nurse tried to find my vein. Restraining me as I let out a blood curdling scream while they started my IV. My dad would drive us to the hospital in the morning and my mom would stay with me all day, while I received my blood. She would have to repeat this again four weeks later, and again four weeks after that, and again, four weeks after that.

My parents married, completely unaware that they both possessed the Thalassemia Minor gene. This meant that each of their children would have a one-in-four chance of ending up with Thalassemia Major. My mother was pregnant four times; two of those pregnancies ended in miscarriage. My sister was born with Thalassemia Minor, and I, with Thalassemia Major. None of this was known until I started to get sick. I was born a healthy, plump, eight pound baby. But soon, I started to become sick and weak.

My parents had been in Canada for only three years at the time. They brought me to several Montreal hospitals, but nobody knew what was wrong with me until I was diagnosed at the Montreal Children’s Hospital. This was the Fall of 1975 and I was six months old.

The Children’s has been my second home since then. And I’ve just said goodbye.

My dad was an airplane engine machinist at Pratt & Whitney. When he had to work the evening shift, my mother would take me to the hospital by Metro, as she didn’t drive. She would spend the day with me. At lunchtime, she would go out to the corner of Atwater and St-Catherine street and buy me McDonald’s as a treat. Dee, my nurse, would always partake of my french fries; she could never resist them because they smelled so good. Later in the day, my mother would buy me Humpty Dumpty barbecue chips from the Tiny Tim café. What a treat!

Last transfusion at the Montreal Children's Hospital

My mother was a stay-at-home mom until I was in Grade 5. At that point, she started working again, as a housekeeper at Hotel du Parc. She would escort me back and forth from home to the hospital, and go to work cleaning rooms while I was getting my transfusion. She followed this exhausting routine until I was 14 or 15.

One day, she let me take the Metro alone to get to the hospital for my transfusion. I was ten years old. I felt so free and happy. I knew exactly where I was going and how to get there — I knew the route to the hospital by heart at that point. When she picked me up from my transfusion that afternoon, on her way home from work, I felt proud. I was learning to take care of myself.

My dad sometimes came to the hospital when he was on overnight shift at Pratt & Whitney, but could never stay in the room when I was having my IV put in. The thought of my pain was too much for him to handle, and he had to wait outside until the transfusion was well under way.

There were a lot of older patients in the transfusion room, mostly teenagers. I shied away from talking to them at first, they were so intimidating and worldly. There were also some younger patients, who I felt were too young to waste my time with. But then I met Amy. She was exactly my age, nine years old at the time, and we instantly became best friends. We would sit on the same bed together and create outfits for our paper dolls while receiving our blood transfusions. We started scheduling our transfusions together, and this made them much more pleasant. My mother and Amy’s mother would take turns watching us. It was a long day. We would get to the hospital around 8:30 a.m., get our IVs put in, get crossmatched with the donor blood, receive the transfusion, and finally leave around 2:30 p.m.

As I got older, I got to know more of the patients. We were always transfused in a large room that had a couple of chairs and one or two beds. I would spend the day laughing and talking with whoever was there. It made the day go much faster and made me feel that I was not so alone. Some days, we were hysterical with laughter, teasing each other and concocting absurd scenarios to pass the time. Some days were more painful than others, and I would sometimes leave the hospital feeling like a human pin cushion, completely crushed.

Nathalie looks for a good vein.

Even now, a day or two before transfusions, I sometimes experience light-headedness and dizziness due to low hemoglobin levels. Other times, I feel perfectly fine. When I was in my mid-twenties, I started experiencing severe bone pain in my hips and back. This was the result of very low pre-transfusion hemoglobin. The pain was debilitating and, in order to counteract it, my hemoglobin needed to be stabilized at a higher level. I then started receiving blood every three weeks instead of four, and I am still on that schedule to this day.

Hooked up to the infusion pump. Each bag takes approximately two hours to infuse.

When I was a teenager, I heard through the grapevine that several of the older Thalassemia patients had died. Eventually, the iron that they received from frequent transfusions would build up on their heart and liver and would cause those organs to stop working. As children, they had been told that they would live to maybe eighteen or twenty years old.

In 1980, when I was five, we were introduced to a new medication: an iron chelator that would remove the excess iron from our bodies. One of the older patients and my nurse came over to our house one evening to show us how to administer this medication. It would be delivered by subcutaneous injection and a slow overnight infusion, powered by a battery-operated pump. The nurse used an orange to demonstrate the correct angle that the needle should be inserted. The medication would be infused over a period of eight hours overnight. This iron chelator changed my life; it meant the difference between an early death and a normal lifespan for me.

The treatment was difficult and painful. We had to use this iron chelator five or six times a week with the infusion pump strapped to our bodies while we slept. Most nights, I would try to put it off for as long as I could. I could tell that my parents hated having to hurt me like that. The needle was painful. And because the injections were almost daily, the injection sites would get swollen and tender. But this is what we needed to do in order to keep me alive, so once again, my parents adhered to the treatment regimen, despite how difficult it was. My mom and dad would take turns putting the needle in my arms, legs and stomach. When I was twelve, I learned how to mix the medication and administer the injection by myself.

I continued these injections until I was 21 years old, when a new iron chelator in pill form came along. I jumped at the chance to try it, and it has given me an unparalleled amount of freedom. I credit my parents for making me understand the importance of following these treatments. Their strength knows no boundaries.

For the teenagers in the group, starting such a cumbersome and painful treatment at a relatively late age was a huge life change and a sudden burden. A lot of patients died, because it was either too late for them to be saved by the medication, or they were not able to cope with such a painful medical regimen. One patient that I knew quite well, decided to let himself die, because he felt that he could no longer continue with the transfusions and chelation therapy. It is a loss that I still see reflected in his parents’ eyes every time I see them.

There are normally between one to five Thalassemia patients transfused at the same time.

Seeing these older patients die had a profound effect on me. I knew firsthand how painful the treatments were. They were extremely difficult to follow, and interfered with a normal life. At the same time, the sobering fact that some simply gave up while others just didn’t respond to treatment made me want to keep fighting because I wanted to live.

Growing up, I had a great many scares at the Children’s Hospital. In 1985, when I was ten years old, we started to hear about AIDS. Some of the patients had contracted HIV through a blood transfusion, and had eventually died. I was petrified. I had heard that HIV could remain undetectable for up to ten years. At every transfusion that I received, I would wonder if I’d be infected next.

A few years later, when I was a teenager in the early 90s, the Hepatitis C scare came along. Quite a few patients had contracted it from blood transfusions, and a few people I know are still fighting to overcome it.

Blood transfusions today are safer than they’ve ever been. Still, there is always that chance, however minute, of infection or a bad reaction. But this treatment, along with proper iron chelation, is the best chance I’ve got. And the benefits of it far outweigh the risks.

I am O positive and receive two units of blood every three weeks.

I know all too well, that were I born a generation earlier, I would not be alive today.

Today, I received my last blood transfusion at the Montreal Children’s Hospital (my subsequent ones will be at the new MUHC super hospital). My first transfusion at the Children’s was received when I was a six month old baby, and I am turning 40 years old this week. As I said, the Children’s was — quite literally — a second home to me. I knew the Home Care unit inside out. The nurses took care of me and became like a second family. The patients that I spent so many hours with helped me to feel that I was not alone. They understood me and the difficulty of the constant pain, the difficult game of balancing life and medical treatment. And through it all, there was humour and friendship.

All photos by Jim Royal.

Whistling in the Dark

You say that I am brave living with a chronic illness, but I must be even braver than you know.

I do not feel the need to believe in life after death or that some force is watching over me. I do not need to believe that everything happens for a reason. I know that everything that happens is random and unplanned and not a punishment or a reward.

I do not feel the need to believe in the fantasy world of chakras, astrology, or the fevered imaginings of Deepak Chopra. I do not believe in heaven or hell, I believe that we choose to make our own lives heaven or hell right here on Earth.

I am also brave for the following reason. I am unable to have children of my own. When others tell me about their children, how wonderful they are, how annoying they are, how proud they are of them and how they have never felt this much love before, I have to live with the knowledge that I will never experience that myself. I will never have that. And this pain is constantly with me, every single day. I have to face this in my everyday life, at community celebrations, at work, on Facebook, from friends, strangers and colleagues. I am so happy for them, but because I’ll never have that, it tears away at me and, to be honest, it fucking HURTS.

But I’m facing it. I don’t have a need to blame any supernatural force for punishing me and not giving me children. I definitely don’t have a need to go to a psychic or a medium for help. I’m not following any superstitions, or going to a homeopath out of desperation. I’m not holding out any false hope.

I’m facing the situation and being honest with myself and trying to move on. After all, I have an amazing husband, family and friends, a wonderful place to live, enough food to eat and enough money to travel. Most vitally, if it were not for advances in science and conventional medicine, I would not even be alive right now. I would have died when I was a teenager. The fact that I am in my 30s right now is nothing short of a miracle (the scientific kind, of course). And that is a hell of a lot more than most people have.

What I’ve been ruminating about lately…

We are each responsible for our own peace and happiness. I am learning to stop looking for it outside of myself. Bad things and good things happen to everyone, no matter if you are a “bad” person or a “good” person. The universe harbours no favouritism towards any one of us. I take comfort in knowing that every bad thing that happens to me is random, and that the universe is indifferent to me and unaware of my presence.

To be, to do. Do Be Do Be Do.

I remember the first time I heard the words.

I was in my early twenties, and in Toronto for a conference. My aunt and uncle picked me up downtown after the last day’s sessions. They wanted to take me to Queen’s Park.

It was an ideal Fall day, the air was crisp and clean (as clean as it can get in Toronto) and dry leaves crunched underfoot. The sun shone and warmed our faces as we happily chatted and made our way down a stone path. At one point, we sat at a bench and continued our conversation for a few minutes, after which my uncle and I got up to proceed with our walk. My aunt stayed seated. She looked up at us and said “You two go ahead. I’ll catch up with you later. I want to sit here and just be.”

I was shocked. I had never in my life heard anything like it. To just be? To sit and do nothing? To be idle?

I grew up in a household where things were always buzzing, where there was always something to be done, someone to help, something to be mended. The phone would ring and we would go, go, go. One thing done, and on to the next. If things were not done in time, then other things would be delayed and we couldn’t have that.

The only time I saw my parents rest was at 4 pm when they had tea and biscuits. It’s still part of their routine, now that they are retired. Even then, it’s just a fifteen minute break, and then on to other things.

I find that I am often the same way. There are always a million things to do, and when I’m not doing any of those things, I’m checking my calendar and to do list to make sure that I don’t forget anything. I feel a sense of accomplishment when I get things done. I feel the raw satisfaction of striking an item off my list.

Coming back to that day in the park, the more I thought about what my aunt said, the more fascinated I became. To just be. Such a simple concept, but oh, so luxurious! Was it possible to be at rest and just be happy in the moment, and feel a sense of how rich our lives are and how lucky we are to be here without worrying about what comes next?

I want to sit here and just be. Those words remind me that sometimes, even for a moment, I need to stop doing and remember that life is not a race.

The Face of God

The face we assign to God when we are children is a well-worn cliché by now: an old white man with a wise, wrinkly appearance and a long snow-white beard. As we grow older we realize that the probability of God looking like Santa Claus or even George Burns is, indeed, very low.

As I get older (and hopefully, wiser), I realize that the probability of God having human attributes is even lower. We, as human beings, have historically had a tendency to think of God as being physically similar to us, likely because of the belief that He created us. But how probable is this idea?

First of all, if you, like me, assume that there is only one God for all peoples, what would His race be? Would He be white, black, Chinese, Indian? I think the answer is most probably none of the above.

Would this God be male or female? We always refer to God as He, likely because this is the way in which he is referred to in the Holy Books. Yet, at the same time, we are told that God is not a human being. He had no mother or father to speak of, and he cannot have a human relationship, and it follows that He cannot father a child. However, it is a distinct Christian belief that God impregnated the virgin Mary resulting in the future prophet Jesus. (This, of course, also assumes that God is a He.)

I think it is highly unlikely that God has a gender. Having said all this, the attributes we assign to God are overwhelmingly human ones: goodness, kindness, mercy, benevolence. Why do we assume that God is just like us?

I think the reason is that assigning human attributes to God simply makes it easier for us to believe in such a being. Consequently, many of us are guilty of believing in our rabbis, priests, and mullahs, as if they themselves were God.

The Art of Bise

I can’t get behind people who don’t know how to do the bise properly! In my opinion, not doing the bise properly is as bad as giving someone a cold-dead-fish handshake!

For those of you who do not know what the bise are, they are those little kisses you plant on one’s cheek as a greeting and a good-bye. Sometimes, the kiss to the cheek never actually makes it, and it turns into a cheek to cheek thing, which is fine, too. :) For more information, observe these two doing the bise!

But too many times, I come across people, who, rather than actually kiss the other person’s cheek, instead kiss the air with a loud smacking sound. This is unacceptable. Not only does it come off as impersonal and ungenuine, it reeks of indifference. The whole point of the bise is to show joy at the presence of the person before you.

Mon dieu! If you can’t do the bise properly, just shake my hand!

Racism…or culture clash?

The U.K. is psycho-analyzing itself this week after complaints of racism towards Bollywood actress Shilpa Shetty on Big Brother. I personally don’t watch reality shows (as I find my own life much more exciting). Apparently, disparaging remarks were made regarding Shetty’s entire person, including the way she carries herself, the way she eats and speaks, and her hygiene. She was also allegedly called a “dog” and a “Paki.”

The TV station, Channel 4, that carries this reality show refuses to pin the word “racism” on this, saying “We have reached the view that we cannot with certainty say that the comments directed at Shilpa have been racially motivated or whether they stem from broader cultural and social differences.” Similarly, some cautious on-lookers are calling the incident a result of “culture and class clash” (as if that is so much better!)

In order to live with one another in civil society, we have to be ready to, at the very least, accept each other’s differences. Ideally, we should each embrace the cultural richness that “the other” brings to us. I am very, very pleased that this incident has brought up so much debate in the U.K. They (and we) need to take a long, hard look at ourselves and what’s brewing underneath. The effort on the part of the U.K. to get to the crux of the matter is admirable.

The most alarming and inane comment to come out of all this (and believe me there have been many) actually came out of the mouth of a fellow Indian. Bollywood filmmaker Mahesh Bhatt in Mumbai’s DNA newspaper said: “I believe no-one can insult you without your permission. Shilpa Shetty has paid the price for trying to desperately seek the approval of the West. It is pathetic how we can go on bended knees and lick the boots of Westerners in an effort to be part of their world.”

What the…??? So rather than applaud this woman for attempting to integrate, you insult her and call her pathetic?? Way to go for solidarity (I pity your wife).

In examining all this, quotes, news coverage, etc…I’ve come to the conclusion that in addition to exhibiting racist behaviour, whether or not intentional, Ms. Goody at the same time displayed her own insecurities. The fact that Shetty is a beautiful, accomplished actress who carries herself with poise, dignity, and grace was just too much for Ms. Goody. In fact, the way Ms. Goody reacted to Shetty was a clash of class.

Shetty has class, Goody has none.

It’s not all about you!

I was getting onto the Metro train on my way to work the other day. There were few seats left, and ample room to stand. I didn’t get a seat in time, and so I stood. Not a big deal. Then I noticed a very pregnant woman in her thirties. She was standing right next to me. I was shocked that no one offered her their seat!

I looked at who was sitting in the closest seats. One was a man in his 60s, the other two were women in their 20s. They did not budge. They were but two feet away from her, and yet, it didn’t even cross their minds to get up and offer her their seat. Or maybe, worse, it did cross their mind, and they still didn’t bother to get up. I myself, felt embarassed at their behaviour. They obviously felt their comfort was much more important than this pregnant woman’s.

What is wrong with these people? Why is it that our generation is all about “ME”? When I descended from the train, I felt that maybe I should have said something to those people, shamed them into realizing their gaffe. How many times have you wanted to speak out but don’t?

I challenge all of you reading this blog and myself to take action the next time you find yourself in this situation. Embarrass the pants off ‘em. Say something honest and simple like, ” Why aren’t any of you offering this woman a seat? Can’t you see she’s pregnant?”

And see how fast they get up!

Incroyable!