All posts by uzema

Marielle

Friendship

My best friend Marielle died while in a diabetic coma. She had had her 61st birthday only a few months ago. 

I learned that she had died only the day before I left for Amsterdam to celebrate my twentieth wedding anniversary with my husband, Jim. Her loss coloured the entire experience. I kept remembering her face, her voice. It’s still surreal to me that she is gone.

On Crescent Street in Montreal.

I first met Marielle in 2002 when starting my technical writing classes at Concordia. I remember her walking into our classroom: a beautiful tall blonde, smartly dressed in a long wool coat. I then ran into her at a Society for Technical Communication event, as she was also part of the tech writing community in Montreal. We quickly became best friends. 

She became one of the people in this world who loved me most, with all of her heart. She genuinely wanted the best for me and deeply understood me as someone dealing with her own serious medical issues. She always said I was the bravest person she knew. I always said she was the bravest person I knew.

Celebrating Marielle’s birthday in 2025.

To be loved by Marielle meant to be loved completely and unconditionally. She wanted nothing more but to spend time with her friends and family. We could talk and laugh for hours on end.  

Marielle helped rescue my last birthday. It was a few months ago and I wasn’t quite sure how I would celebrate it as I had been in so much pain and under so much stress for many months. I finally decided to have a small gathering with the closest of my friends, as I knew that would cheer me up, but at the last minute, several friends needed to cancel. I spent most of the day crying and depressed, feeling that nobody cared. But Marielle was so excited to celebrate with me and messaged me throughout the day. She and my other best friend came to the party to celebrate with Jim and I and we had an incredible evening. The four of us ended up talking for seven hours!

Celebrating my birthday in 2026.

Her last gift to me spoke of sisterhood; a beautiful glass globe with a bright green tree inside it. The leaflet that came with it spoke of the importance of sisters, even those who do not come from the same family. She said that I was her sister, and we hugged and got a little teary. That was the last time I saw her.

She was one of my favourite human beings on Earth. She loved her friends, family, (and cats!) so fully and unconditionally. And what a sense of humour she had! I will always remember her sitting at my kitchen table, laughing until tears rolled down her face. I will always hear her calling me Uzzie Doll, full of so much love. I will always remember how neither of us ever wanted to get off the phone, how an hour would pass by as if it were a minute. I could talk to Marielle forever and never run out of things to say.

My life is so much richer for having had her in it.

My heart is broken. But my memories of Marielle will live within me forever.

Celebrating Marielle’s birthday in 2024.

I lost my best friend. And I have no idea why.

Friendship

We never asked for the COVID pandemic, but here it is. We did not expect this level of fear, of anxiety, of disruption to our lives. Nineteen months in, and we still disagree on how to handle all of this. This sometimes has the effect of breaking our closest relationships, even though it should not.

We have let this virus hurt us even more than it already has. We have let it destroy our most important connections. Friendships are lost, sometimes for no apparent reason.

In fact, one of the best friendships I enjoyed for over 23 years is now gone. I look back at the last conversation I had with my best friend on chat, and I must say that I still don’t understand why that conversation warranted an end to 23 years of friendship.

In the conversation, I cited the number of COVID cases that I had googled for my friend’s town. My friend seemed to take exception to the number and reacted strongly against it, basically saying that it was a lie. But when I asked him if he was upset, he said that everything was fine. I told him how much I valued his friendship and the fact that we could always speak openly with each other. He said it was his pleasure, and I took that seriously. I expect my friends to say what they mean, and to mean what they say. Maybe it was my imagination, but I felt a disingenuity and stiltedness in his response. I thought that perhaps I was projecting, and decided to take him at his word.

The next day, I had a very painful blood transfusion which took me a couple of days to recover from. When I felt better, two days later, I decided to recheck the COVID numbers I had found, as they had seemed a bit excessive. It turned out that Google had not given me the COVID numbers for the small town my friend lived in, but rather for the entire province.

I felt awful at having cited the wrong numbers, and immediately took responsibility for my mistake. I sent my friend an apology. I also wished him well, and said that I hoped he stayed safe. The messages went through and I got the read receipt.

I never heard from him again. Several further messages were sent with no acknowledgement.

I tried calling him and writing to him on WhatsApp, with no answer. I sent him several emails and a LinkedIn message. Nothing. I just wanted to know he was ok.

Doubting myself, I asked several friends their opinion about the last conversation my friend and I had had, and whether they thought I had said anything upsetting or anything to warrant this one-sided end to our friendship. They all said the same thing: nothing that was said in that conversation warranted the kind of response I received. They couldn’t perceive how someone could become so angry at anything that was said in that conversation. They all said that I was over-thinking it.

Nine months have passed, and I have become extremely worried about my best friend. I wonder if he is okay. I am still left wondering what I could have done wrong. My husband is the most clear headed, balanced, and honest person I know, and he also says that there was nothing offensive in what I said. I mistakenly cited the wrong COVID numbers, that was all. He said that it must simply be that my best friend is going through a very difficult time and it has nothing to do with me.

I recently noticed that his LinkedIn profile is still visible to others, but just not to me anymore. Which shows that he did take a deliberate action to cut me off.

I am the type of person who values truth over silence. I always prefer to know how I’ve wronged or offended others, so that I can make amends. Here, my chance to do so has been taken away.

My best friend was an integral part of my life – for over half my life. He was always there to support me, and I was always there to support him. He has helped me through so much. He helped me when I was going through the most painful time of my life, when I made the decision to risk my life to try to have a baby, and then again when I had my miscarriage. Even though I thought that was the end of my happiness, he insisted that better days would come, and they did.

I always thought that we had the kind of friendship that could survive anything. We have grown together and been through so much since we first met at university, in that early morning Modern Lit class, scribbling jokes in each other’s notebooks.

Neither of us have easy lives. We have both worked tirelessly for every opportunity. We have both fought continuously for the lives we have.

He was one of the only people I could be honest with about how hard it really is to live with a chronic illness and all of my medical conditions. I never sugarcoated how I was feeling. I often find myself protecting other friends against the pain of what I actually live through. I sorely needed a friend that I could be brutally honest with, someone who was strong enough to take the truth. He often said that he hated hearing about the pain I was in, but at the same time, he knew that I needed to talk about it, and he was there to listen.

But he also knew my strength, and encouraged me to keep up the good fight. When I was ready to give up, he told me that my life was worth fighting for, that it was worth all the pain.

We walked the streets of Montreal and talked for hours on end, shared many delicious meals at our favourite restaurant in Chinatown, and discussed the philosophy of Zhuang Zhi over strong cups of coffee. I could discuss anything with him; no topic was off limits.

He often said that I was the only person he could smile with, and that he often felt that he needed to show a menacing face to the rest of the world.

We always joked that the two of us would be sitting on rocking chairs in our old age, side by side, telling each other stories and laughing as we always had.

The COVID pandemic has made me realize that life is short and the connections we have are everything. I always prided myself on having the kinds of friendships that could withstand misunderstandings or ruffled feathers, that we could always talk it through, and come out stronger.

I am devastated that my best friend ended our friendship. There was no discussion, nor any consensus. No goodbye. For months, I have felt an overwhelming sense of guilt that I somehow disappointed my best friend. I feel hurt and abandoned, frustrated that I was not given the opportunity to understand what happened. I did not see this coming.

When I first decided to write this essay, it was to process what I had lost.

Now that I have written it, it has made me realize how lucky I am, how fortunate I am to have had such a friend who was a part of my life for 23 years. How many others can say that they have experienced such a true friendship?

I may not be his best friend anymore, but he is still mine.

My Speech at the National Thalassemia Conference

Thalassemia

We are the first ones. You and I… are the first ones to live full, normal lives.

We have seen other patients die. We have seen other patients give up, because it was just too painful. We have had our hearts broken. We have been terrified of contracting HIV, of contracting Hepatitis.

We learnt to let go. We learnt to keep going.

We learnt to not spend every moment obsessing about whether the next transfusion will infect us. We persisted with our chelation treatment, even when it was painful, even when our skin was so tough, so scarred.

We learnt that we have absolutely no control over some things.

But we learnt that we have each other. Our Thalassemia community. We alone know the difficulties, and the pain. The fears we face. The scars we bear.

And along the way, we have acquired so much love, so much support. My parents are my biggest supporters. I credit them with keeping me alive. If it wasn’t for their persistence, their bravery, I know I wouldn’t be here today.

My husband, my family, my best friends. The love and support they have given to me is wholehearted and unconditional. They are not in my shoes. Yet just knowing that they are there for me, that I can call them and rant, that they try to understand what I am feeling, that they will pull me up when I am down… this makes all the difference.

So what does all of this mean for me, and for us?

Continue reading My Speech at the National Thalassemia Conference →

When Do I Tell My Employer About My Chronic Illness?

Thalassemia

So you’ve applied for a new job! When’s the best time to talk about your chronic illness with your prospective employer?

And don’t forget to visit my YouTube channel to subscribe.

Thal 4 - Telling the Boss
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Here’s the article from the Canadian Business Journal about the responsibility of employers to accommodate employees with chronic illnesses:

http://www.perlaw.ca/en/newsroom/publications/2009/10/28/the-duty-to-accommodate-a-chronically-ill-employee

And here’s more from the Canadian Human Rights Commission about the duty to accommodate:

http://www.chrc-ccdp.ca/eng/content/duty-accommodate