In January 2025, we spoke with Christina Kerekes. She had a poem she wanted to share with us at DWDC. Christina lived with multiple medical conditions that caused her a great deal of suffering, and she had made the decision to be assessed for medical assistance in dying for which she was approved. In the quiet hours of the night when she could not sleep, Christina would write her poem, on her phone. The poem is lengthy, but it is a beautiful expression of her experience living with many conditions – some of which were ‘invisible’ – how she suffered and coped but still found joys in her life. 

Below is Christina’s introduction to her poem. It was Christina’s dream to publish the poem in a book and narrated alongside her many photo memories in a video. Her dream came true when friends Beverley Elliott, Shayn Walker, and Sarah Troyer helped Christina put this together. We are grateful to Christina for sharing her art and story with us to help educate others on living with chronic illness and the choice to have an assisted death. 

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The term invisible illness refers to any medical condition that is not outwardly visible to others to see, even for health care professionals. Even though we say not to judge a book by its cover, as human beings, we tend to require hard evidence that something is physically wrong with someone before we fully commit to believing them: like a limp, a missing appendage, a gaping wound, or a wheelchair etc., but it doesn’t always work that way, and even our own doctors make A LOT of assumptions based on how we ‘present’ during a ten minute office visit. For most of my life I never left the house without full hair and literal ‘industrial strength’ makeup to often hide how horrible I was really feeling and then came home again to collapse and ‘die behind closed doors’ in private. My internal motto has always been, “I can, and I will, just watch me” and I could fake looking ‘well’ (for short bursts) even at the very worst of times. 

Today, I find myself physically, mentally and spiritually ‘exhaustipated’ – a new word I found recently because exhausted just isn’t enough to express just how little gas I have left in my tank!! I am at THE ULTIMATE of ultimate crossroads now and have hit THE mother-load of existential crises as I work my way through the final leg of my journey to make the hardest decision I will ever have to make. I can wholeheartedly say that I have taken this body of mine as far as I can possibly take it. I have tried ‘everything’ and if nothing else, I will know that I fought a very good fight and went above and beyond to find help while I was able!! I have been fighting with EVERYTHING I have for such a very long time, and for a while I could easily hide behind the facade of my appearance for short periods. But as the former nurse educator and practical person that I have always been, I can clearly see the writing on the wall of where this is all headed and it is not good, no matter how positively I try to spin it. Over the last few years, and this last year in particular, I have seen many of my remaining freedoms and good days gradually stripped away, and have been left with so many symptoms on any given day, at any given time that are constantly changing, so I don’t have the energy to do more than basic functioning, and many days I can barely do that. Can it really be considered ‘living’ anymore if all you do is ‘survive’ the day’? I have been asking myself this very question for a while now.

Never doubt your legacy, Christina. It’s a wondrous poem that you have gifted to the world of chronic and debilitating states of existence. What shines through all that pain and debility is your spirit, courage and gratitude for what life is about and its gifts, all of which have sustained you through the tough times. Thank you for opening this door to us all who race through and past and never stop to see, let alone witness suffering. MAID is about relieving that suffering, but you in this poem have cleared the mists and make us stop to hear and see your struggle, your spirit your truths. God speed your journey- you have left is all with many, many gifts. As ever, with kind thoughts, Dr. Jean.

I have THE most amazing friends, the ones who have actually stuck around and stayed with me through the laughter AND the tears, and I couldn’t be more grateful for the life I WAS able to live DESPITE the hardships (while I was able to actually live it).  

Unfortunately, this is barely really living to me anymore, and I am thankful to have been given a little time and the phenomenal opportunity to re-examine and reflect on the meaning of life to me and work on acceptance, forgiveness, peace and letting go which is extraordinarily difficult when I’ve been in fighting mode and have been trying desperately to ‘heal’ for such a long, long time! I never EVER stopped fighting, and I never will, I just moved my goal posts so that my motto, “I can and I will, just watch me” has taken on a slightly new meaning. Now, all that’s left to do is to make THE biggest and most consequential decision of my entire life. But I am sincerely grateful to even have MAID as an option and treatment choice to make at all! 

This is the story of the invisible side of me.