I’m not sure how to start this. I’ve thought about what I would say here a thousand times, reciting the different ways I would begin, how I would explain what happened. I try out new concepts and sentences in my head while I drive to school, while I scroll online, or the moments before I fall asleep. Should I sugar coat it? “I have a chronic illness, but it’s all fine really”, no, that’s not a good way to start it, it undermines this whole experience. Should I tell you all the wretched details? “My life feels like it’s been desecrated, my health is completely beyond my control, it feels like nobody believes the extremity of my illness, and if they do they don’t care” no, I can’t use that either, too upsetting. Maybe it’ll be only about the future: here’s how I am moving forward. But that leaves you in the dark about what’s happened these last few months. And I know what it is like to be morbidly curious, I know you want to know: what’s the gritty stuff, what’s the heartache. My blogs with pain and suffering have done a lot better than those of me thriving. People seek grunge, they want to relate, or even to gain gratitude for their own position. That’s fine, I’ll do my part to provide what you’re here for. You’d do it for me, wouldn’t you?
So let’s begin. Where did I leave you? I believe I was still on the African continent, in excruciating pain, waiting for my flight back to Canada to come. That was mid-November. I worried for a lot of things coming home, but one of the things that would creep into my mind most was: “what if when I get home, I am perfectly fine. What if I am just a whimp who was homesick and needed her mum, what if there is truly nothing wrong?”. I was so embarrassed to come home, the last thing I needed was everyone thinking I was never sick to begin with.
In a blessing to my anxieties, and a curse to every other aspect of my life, I remained sick upon returning. These days, there are times I feel my life is even more impacted than I would have predicted. I am in almost constant abdominal pain, I’m pale enough that it often comes up in conversation, I sleep a lot, my weight continues to drop since I don’t eat much, my hair is thinning, my joints ache a couple times a week, I get headaches frequently, my belly gets so distended after eating that my skin hurts. A lot of times, I go to sleep in pain and feeling sick, and wake up similarly. And of course, more symptoms that I just am too embarrassed to share (what if someone good-looking is reading!!). I don’t say that for your sympathy, I’m just painting you a picture.
So what have I done to try and make this better over the last 6 months? I’ve gone to my primary physician with all of my Rwandan medical records (3x), had a colonoscopy, endoscopy, and 8 biopsies (in Rwanda), had my lab results reviewed by a team of physicians in South Africa, seen my nurse practitioner, gotten a naturopath who I see regularly, been referred to a gastroenterologist (who can’t see me until late May), fallen down TikTok remedy rabbit-holes, asked friends what they think I should do, had bloodwork done, gotten allergy testing, taken every drink and supplement on God’s green earth, meditated to reduce stress, called friends’ family members who are physicians for off-the-record advice, chatted to my pharmacist, tried all kinds of over-the-counter medications, drank peppermint tea, shown anyone who will look my medical records (including internal photos from my procedure), cut out gluten, dairy, citrus, nuts, and essentially eaten only chicken, rice, vegetables. If you told me there was science to suggest cutting a toe off might help, then I’d ask you to hand me a knife.
I have pretty intense feelings about my experience with the Ontario healthcare system, so I’ll keep it short: I’m not being heard, I spend most of my appointments proving I’m sick. The specialists who can help me are beyond my reach, and for whatever reason, nobody is willing to provide interim solutions. Here is where I make this political: if you think Doug Ford cares for you and the nurses and healthcare workers who care for you, or that Ontario is currently meeting even the bare minimum for what healthcare needs to be to keep people safe and healthy, I beg you to consider how different my experience would be if those caring for me weren’t burnt out, underpaid, and understaffed.
But beyond the physical symptoms, this has been emotionally one of the hardest things I have ever been through. In late November, we celebrated Mya’s birthday. I stood in the upstairs bathroom before the party began and cried. Everyone’s going to know I failed as soon as they see me. I have a blog that showed them that I couldn’t do it. I’m not even in classes right now, I am basically the trope of the old child living in their parents basement, unemployed, no future in sight. That’s me.
But things are not as extreme as my anxiety makes them out to be. My friends greeted me with open arms, my first day back to campus went smoothly, and life returned to a new normal, socially. Seeing people I haven’t seen since I left, whether we are close or not, remains a challenge. Spilling my guts about everything that has happened to me since September 18th is personal and exhausting, but people are overwhelmingly supportive and understanding.
My school, however, was not. I’m going to keep the details to myself, seeing as it all feels a bit volatile until the degree is in my hand. But the University of Toronto has, at times, caused me more emotional strife than the illness itself. But in a miraculous turn of events that nobody, including myself, anticipated, my negotiations with the university became fruitful suddenly in mid-March. After months of back and forth, I finally was given the go-ahead: if I accepted an unpaid online placement, with the partner (The Rwanda Climate Change and Development Network) through my organization (Centre d’etude et de cooperation internationale – CECI) and worked full-time until my return to school in September, I would be allowed to remain in the co-op program and to continue with my research.
I called my friend Leen to tell her. She knew that A) I don’t generally agree with using university students for free labor and therefore never approved of UofT’s partnerships with companies that have mostly or entirely unpaid positions. And B) that money matters to me, and spending the next 5.5 months working for free would be a financial burden, since it would largely prevent me from getting my own full-time job for the summer. Because of this, she asked me what I was going to do. I told her it wasn’t ideal, of course, but after all of this I didn’t come this far just to reject this offer. I would figure it out financially where I could, and go back to doing what I love, celebrating the win that it was, despite the downfalls it came with.
So here I am. This week I started working online with the Rwanda Climate Change and Development Network again, and I am so excited to be back working for RCCDN and CECI. They are incredible organizations doing amazing work, and I am proud to be a part of that in whatever way I can.
I still sometimes feel jealous of my friends who are able to live in a different country this year and work and study at cafes across the world, instead of from their parent’s couch. But I am happy that I fought for what I wanted and got it, and that despite the upheaval this illness has caused, it didn’t take this away from me entirely.
When I came home, words that swirled in my brain frequently were “there was supposed to be more“. There was supposed to be more time in Rwanda, more research, more fun, more exploration, more health, more vibrancy, more happiness. I don’t disagree with that sentiment, this year was supposed to look different than it does right now, I was totally ripped off by whatever it is that controls my fate. But for the first time in many months, I feel like there is more, it just isn’t here yet.
That’s that on that,
K8
Kate in Kigali 