All posts by uzema

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.

We Are All Made of Stars

After reading my last blog post, one of my best & dearest friends asked me what I thought about the law of attraction and whether that fit into my philosophy.

Here is my answer.

I do believe that thinking positive thoughts, and taking positive actions (having good energy) affects us as individuals, as well as the people around us. However, I don’t believe that the universe is at all aware of us.

Earth is a tiny mote of dust in a vast universe and we are but tiny specks. We have the power to make decisions that have a positive outcome on our lives, but we cannot control the cosmos. 

We have a connection with the universe in the sense that we are an amazing (but minute) part of it; indeed, the ingredients that make up our bodies are the same ingredients that make up the cosmos. Just as we were born and will one day die, the universe was also born, and will one day die. We are a part of it all. As Carl Sagan said “The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of starstuff.”

Likewise, I don’t believe that the universe is at all aware of our thoughts and our actions. I don’t believe that the universe can control the relatively insignificant aspects of our lives…however, I believe that we, as human beings can and do. 

I do not feel bad that the universe is not conscious of my presence. It is enough for me to know that we are a part of the universe and are the lucky ones who actually beat the odds and were born.

We are insignificant compared to the cosmos as a whole, but are significant to those whom we surround ourselves with. The relationships we have with others and the way we treat our fellow humans is most important, I believe. 

That’s what I think.

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.

Of Birthdays & Blood Drives

This summer, I went to a 50th birthday celebration for someone who never expected to live 50 years.

The celebration was for somebody that I have known for decades. His name is George, and just like me, he has Thalassemia. We receive blood transfusions every three to four weeks, and growing up, we would often receive the transfusions together. He was already a teenager when I received my first blood transfusion as a six month old baby.

George’s 50th birthday was a milestone for every single one of us with Thalassemia. You see, George is the oldest of our Thalassemia patient group in Montreal. When he was a teenager, he was told that he would live only into his early twenties, which was a typical lifespan for a Thalassemia patient at that time.

Thalassemia patients receive multiple blood transfusions, and the excess iron received slowly builds up on the heart and liver, ultimately leading to the death of the patient at a young age. But when I was about 5 years old, a drug called an iron chelator was introduced. I was injected with this medication almost every night for 16 years. It saved our lives. Eventually, the chelator became available in pill form, replacing the painful injections.

My generation is the first to actually live a full, normal life with Thalassemia. George’s 50th birthday is a huge deal for us.

It gives us younger patients hope, and confirmation that we, too, can live to George’s age and beyond.

But we can’t do it alone. In Montreal, there are almost 50 people like George and I, living with Thalassemia. Each of us need a blood transfusion every three to four weeks to stay alive. Every transfusion requires two or three units of red blood cells.

We need you.

There will be a blood drive held at the Cité du Multimédia in Montreal at 111 Duke street on October 22nd. Our goal is 65 donations. Please consider being a donor! Call to make an appt at 1-800-343-SANG or just simply show up between 9 a.m. and 3 p.m.

In Memoriam…

I remember how I felt when they told me that I was pregnant. My first reaction was shock. I had been through a year and a half of pure hell: the gut wrenching pain, the rollercoaster of emotions, the bad reactions to the super hormone injections, the tearful taxi rides to the hospital and then back to work as if nothing had happened. My body reacted horribly to the treatments each time, and each time a treatment failed, I swore it would be the last time I tried. I was beyond my breaking point many, many times, at times even suicidal. The added stress of being off my Thalassemia meds and knowing that my iron levels were rising while I continued to receive blood in order to stay alive was enough to make sleepless, tearful nights the norm.

My husband Jim stood by my decision to try for a baby, even though it was painful for him to see me like that. I knew that I would always regret it if I did not try to achieve something that I wanted so badly. I had grown up believing that I could do anything that I wanted to do. And I did. I went to university, I got married, I worked hard at following the medical treatments, sometimes painful and exhausting, that were necessary to keep me alive and healthy.

Of course, living with a chronic illness, Thalassemia Major, makes having children extremely complicated. With the current generation of Thalassemia patients, women are actually living long enough to get married and have children for the first time. This was never the case before, and so this is all new territory. Some women have attempted it and have succeeded, but of course, every person is different, and the level of reproductive tissue damage varies from patient to patient.

Jim kept telling me that it was a miracle that I was even alive, and that he would be thrilled if he could just have me for life. The thought that the medical treatments and potential pregnancy could cause my health to fail, and that he could eventually lose me, terrified him.

I couldn’t even allow myself to hope that any of this would work. I knew it would crush me if it didn’t, and I was trying to prepare myself for the worst. And then, one evening at work last Fall, the nurse called and told me that my blood test was positive. I was pregnant.

Jim and I were shocked. The odds that this would actually work had been so slight. We went out to supper that night and were in such utter disbelief that we mostly just stared at each other, speechless.

I told a few close friends and family the news, and they were thrilled. I was cautious. I was extremely nervous about the upcoming ultrasound, though I told myself that I was probably overreacting, that the biggest hurdle had been overcome. Sometime within that two week waiting period, I actually let myself feel a bit hopeful and excited about what was to come.

At the ultrasound appointment, the technologist bluntly announced to Jim and I that the growth of the embryo had stopped, and so I was given a prescription to induce a miscarriage. We weren’t at all prepared to hear that, and were both shocked at the news. I cried so hard that I could barely see. We saw our doctor afterward and he told us to wait an extra week, just in case.

A week later, the situation was the same. We were then told to wait yet another week. It was like an act of deliberate cruelty. We both felt that we were going to go insane waiting. I scheduled an extra blood transfusion to boost my hemoglobin level, continued on my pregnancy diet, and continued taking the hormones that made me feel physically ill and depressed. I knew there was very little chance that the pregnancy was viable, but even if there was only a 1% chance, I had to do everything that I could.

Finally, after the third ultrasound, we were told that the pregnancy, at two months, was definitely non-viable. I could stop the hormones and wait to have the miscarriage naturally.

I was living a nightmare. One evening at work, my body started hurting all over. I felt extremely sore and weak, and my best friend, who luckily works with me, sent me home in a taxi and I went straight to bed. The miscarriage started the next day and continued for a few days after that. And then it was over.

Except that it isn’t. Six months later, the thought of what could have been still hurts. Six months later, I still love the potential life that could have been our son or our daughter.

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.

My Hands

wedding_henna_designMy hands create, comfort, arrange, wash, wave, steer, nurture, type, play the zils. They fall into stylistic form when dancing bellydance or indian fusion. They allow me to navigate the Internet, click on what I like, and serve coffee to my friends.

I often fantasize about having hands with no scars.

The veins on my hands are pierced every three weeks so that I can receive blood. These veins have been used since I was six months old and they have been tired for a long time. The surfaces of my hands are scarred as are the veins themselves.

There are days when my veins are impenetrable, when the nurses have to push the needle against my skin so hard and it is so painful that I feel like I am screaming inside. And then there are days when the needle slides in easily, as if my skin is made of butter. There are days where I feel like a human pincushion, where two or three nurses take turns trying to get my vein, and I just want to cry, give up and go home. On other days I laugh and tell the nurses stories even as they start my IV…those are the good days.

Sometimes the needle goes in too deep, puncturing the vein on both sides, and the vein is blown.

When I was a teenager, I realized how ugly the scars on the backs of my hands were and took great pains to hide them. Today, I show my scars to good friends.

My sister always said that I was lucky to have hands like a piano player, long and slender. When I would come home from transfusion, she would love that my hands were so warm. My husband endlessly compliments my hands and says that they are elegant and beautiful. When I come home from transfusion, he asks where the infusion took place and  kisses my sore hands and wrists.

There’s a comfort in using the same veins for every blood transfusion, just as there is a comfort in receiving your transfusions at the same hospital and having the same nurses start your IV. It’s not a pleasant experience, but every bit helps.

I often try to imagine what my hands would look like with no scars, no history, smooth and even. They would be unrecognizable, not my own.


What I Have Learnt

NASA-Apollo8-Dec24-EarthriseBeing a good person does not depend on whether I believe in a day of judgment.

It is never a crime to question. The real crime is to never question.

I would much rather know the truth, however inconvenient, than to be fed lies to make me feel better.

I take comfort in the general indifference of the universe. When bad things happen, I know that it’s not personal.


Nuit Blanche Montreal 2013 – A Photo Essay

Nuit Blanche is one of my favourite times of the year. A night when the city is at its most dynamic and sparkling with life.


Montrealers know that the best way to enjoy Nuit Blanche is to leave your car at home. The metro was packed with partygoers. Here, a rarely seen view of the inside of the tunnel at Berri-Uqam direction Honoré-Beaugrand.


We started off at the Olympic park where I took a turn on the giant snow slide. Yup, that blur in the picture is me!

The Blur

The crowd gathered round to watch the tuxedoed penguins running around free at the Biodome.

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Then out came the fearsome birds of prey. As the owl stared straight into my eyes, I felt it could see into the very depths of my soul. Brrr.


After that, it was off to the Quartier des Spectacles to watch my fellow Montrealers enjoying the Air France Ferris wheel and the Urban Slide to the soundtrack of DJs performing at 24 HOURS OF VINYL, providing cool beats for a hot crowd.

IMGP2054 IMGP2046Red Cat

We ended the night at the Society for Arts and Technology where patrons in bean bag chairs played old video games projected onto walls and the 8 bits/chiptune got me dancing. A perfect end to Nuit Blanche 2013.

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All pictures by Jim Royal.

Osmosis Schmosmosis

I just received an email with a deal from one of those Groupon-type companies. It offered a massage, a back exfoliation–and an ionic spa session. I had no idea what an ionic spa session was a couple of hours ago.

I decided to check out the spa’s website to get a feel for the location. (I prefer not to link to them, but you can google their name: Clinique La Source de la Santé.)

I first noticed that the spa was actually marketed as a health centre. I also found a page describing the ionic spa session that had been mentioned in the deal.

Now, what I’m about to tell you is nothing to laugh at, because people spend loads of hard-earned cash on this service and believe that it works. But when I read about this treatment, I could not stop laughing. The claims being made were utterly ridiculous.

So this is the treatment: you put your feet into a foot bath for thirty minutes. But not for the purpose of simply relaxing, or having your pods massaged with jets of warm water, which would feel great anyway after a long day on your feet.

This is how the treatment is explained (the grammar and spelling is all theirs):

Essentially, the IonicSpa functions as a magnet that helps your body to detoxify by attracting toxins! Toxic particles exit the body through skin pores buy osmosis to where they are neutralized and trapped in a charged bath of water! The IonicSpa is care for the immune system; it is revolutionary way to re-balance, reenergize & detoxify the body; treatment sessions re-stabilizes cells of the body so that normal physiological functions run at optimal levels, particularly the uptake of necessary nutrients & the elimination of unwanted waste products.

In addition, this foot bath is supposed to help you lose weight, relieve your seasonal allergies, give you more energy and increase oxygen levels in your body, reduce inflammation, take away your insomnia, reduce stress, restore the immune system and remove heavy metals from your body.

I love that last claim. Gee, what was I doing taking painful deferoxamine injections for 16 years in order to remove excess iron from my blood? All I needed was an ionic foot bath!

Their website also has absurd pictures of people’s feet in these ionic baths, with the water changing colours according to which part of the body the toxins were supposedly coming from (the liver, gallbladder and so on). The toxins were allegedly leaving the person’s body through the dilated pores of the person’s feet! One of the pictures showed coppery coloured water with reddish brown sludge-like particles in it. Pretty gross.


Because it is just too hilarious not to share, here’s a guide explaining which parts of the body are being detoxified according to the colour and texture of the water at the end of the treatment. This information is derived directly from the website.

Black Detoxifying from liver
Black Flecks Heavy metals especially Iron
Brown Detoxifying from liver, cellular debris and tobacco
Dark Green Detoxifying from gallbladder
Orange Detoxifying from joints
Red Flecks Blood clot material
White Cheese – Like Particles Most likely yeast
White Foam Detoxifying from Lymphatic system
Yellow – Green Detoxifying from kidneys, bladder, urinary tract and female/prostate area
Oily Surface Fatty, lactic, oxalic and uric acids

So how often are you supposed to come in for a treatment to ensure the very best results? This health centre strongly recommends two to three sessions per week for four weeks to start. At a cost of $40 per thirty-minute session, that amounts to… a whopping $480. For. Absolutely. Nothing.

I did some research into the truth about how these foot baths actually produce colour. quoted Dr. Stephen Barrett of Device Watch, who says that the colour of the foot bath water changes because of “a common chemical reaction, caused by the iron oxide — more commonly known as rust — that occurs when the electrodes in the water break down.” Dr. Barrett also notes that the water would change colour “even if a foot was absent”.

To see an ionic foot bath in action, I dug up a couple of YouTube videos in which experiments were done to see how these foot baths produce such gunky textures and colours. I also found a training video that is probably packaged with one of these ionic foot bath products.

It seems that after these treatments, the people using them believe that they have been cleansed, and that their bodies are now pure. But, as the Voice of Young Science says: “Your gut, your liver and kidneys, your lymphatic system and your skin are more than capable of dealing with everyday toxins.”

I’ll let you in on a little secret. I know of a contraption that you can acquire for less than the price of two of these treatments. You can even pick one up from your friendly neighbourhood Canadian Tire. I, myself, have had one for years! I can guarantee that it will massage your feet and make you feel relaxed and blissfully rejuvenated.

And as an added bonus, your feet won’t be sitting in a broth of rust and sludge.

Foot bath