My Speech at the National Thalassemia Conference

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?

Well, there are a lot of unknowns dealing with this illness. And that can contribute to feelings of helplessness and lack of control. I decided to take stock of myself and figure out what gives me energy and how I could use it to do something good.

I discovered that one of my strengths is communication. I had always wanted to express my gratitude toward those who give of their blood so generously. And to the volunteers who give of their time and energy so freely.

Early in 2009, I discovered that my office building held blood drives twice a year. So at one of these blood drives, I approached the organizer to say thank you. She immediately asked me if I wanted to donate blood. And that started a conversation that changed my life. I told her about living with Thalassemia. And she saw in me my need to reach out to people. She said I would be a great spokesperson for Hema-Quebec. I thought, maybe she’s right. Maybe I should try.

I realized that raising awareness and making connections is what I’m good at. And this allowed me to use my communication skills.

I gave speeches to blood drive volunteers and to long-time blood donors. I recorded two radio commercials to raise awareness about blood donation.

Then Hema-Quebec called me at work one day and asked me to do a TV commercial. I said to myself “I can’t do that.” I got off the phone and went straight to my boss and told him what had happened. I said “I can’t do that!” He told me three words that changed my mind, and my life. He said… “It’s the message!”

And I realized that he was right. It didn’t matter that I was scared of being on TV, that I was scared of being in the public eye. What mattered was that this commercial would show the viewers how important blood donation was, how it impacted my life and others’ lives. I called Hema-Quebec back and said, “Yes. I’ll do it.”

There have been many times in my life where I’ve been overwhelmed dealing with this illness. I’ve felt helpless, as though I have no control over my life. There have been times when life has knocked me flat, when it was clear that dreams I once held were no longer viable.

One of these times led me to a serious bout of depression. I was forced to deal with a devastating side effect of my illness. Infertility.

I didn’t get a good night’s sleep for about two years. I cried all day, even while at work.

This is something that affects many of us in this community and everyone’s case is different. But I’m not here to talk about that. I’m here to talk about what came after.

I realized that I didn’t have to constantly compare myself to other people. I realized that the things that I was unable to do were outweighed by all the things that I could do. I realized that I could express myself and create something that was purely me. And it was my husband, one of the people who loves me most in this world, who opened my eyes to that possibility.

I realized that I had strength and I had will. I had always wanted to write a book about living with Thalassemia. I didn’t want others to feel alone, as I had.

My husband and I decided to start video blogging. It’s a dynamic and intimate way to reach people all over the world. There were so many things I had struggled with that I knew others must be struggling with, too. What do you do when you apply for a job? Do you tell your potential employer that you have Thalassemia, that you will need blood transfusions every three weeks? If so, do you tell them right away? What could the repercussions be? What are your rights?

And what about dating? When do you tell? Suppose you tell a colleague about your illness and they look at you with silent pity? How does that feel? I sometimes find myself trying to make everyone else feel better. To make it okay for them. But why should I have to make them feel okay about my illness?

I want to have a conversation about all these things. I want to reach other patients and make them feel less alone and empowered to talk about these things. Nobody should have to be scared of talking about their illness. Thalassemia is part of who we are. And we shouldn’t be scared to share who we are because, well, we are pretty awesome!

When YOU create something to share with others, it can only come from your unique experience and perspective, what you have gone through. Use your strengths to do something good that will benefit others. When you can do that, that is the moment where your life takes on meaning.

It also allows you to focus outside of yourself. And when you fill your life with good things, your difficulties diminish in size.

All of us here in this room are so lucky to be alive. We are lucky that we live in such generous societies. Let’s make the most of it.

We work so hard to be alive and healthy. Don’t waste a moment doubting yourself and the contribution you can make to the world to make it better.

Delivered at the National Thalassemia Conference on Sunday, October 14, 2018 at the Hospital for Sick Children in Toronto.

2 thoughts on “My Speech at the National Thalassemia Conference

  1. It was beautiful when you read it at the conference; I just re-read it and felt the same emotion. It is really powerful and inspiring. Thank you for sharing all that in such a warm and intelligent way !

  2. Well done Uzema. I was diagnosed with minor thalassemia few years ago. I also have anemia for the past 2 years. I’m trying to make it go away. With our busy schedule and the more we get old, I noticed that I no longer have the same energy as I train Brazilian jiu jitsu which is also very demanding on the body. Living with this and learning to do better is my mantra. I’m so thankful to be alive and trying to stay healthy ( to the best of my ability). Let me know next time you will have a conference as although mine is minor, I still have to learn to live with it.

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