Looking back over our countless letters, I was surprised to see that Kate and I only first spoke in May. It was then that she came across this blog and took the first step of messaging me. Every day I feel thankful for that message. It might sound cliche, but in these past several months I've genuinely come to view Kate as my sister; as someone I've known forever. Not only that, but we'll be spending two weeks together this November when she comes to visit me in New York!!! It's all I can think about lately.
The amazing Brabons
I've written a bit about Kate, but it seems my words don't do her justice. Undoubtedly, part of why she's so special is the family she grew up in. Kate lives just outside of Melbourne, Australia with her two wonderful parents Martin and Nina, her younger sister Meredith, and her parakeet Teddy ;) Her older sister, Emily, lives in England and is married to Murray. Without having met the Brabon bunch (aside from on our video cameras), I've already been made to feel very supported and just like another member of the family.
Kate is currently 23 years old and studying law and history in her final year at La Trobe University. In addition to being a full-time student, a daughter, a sister, a friend, a world traveller, and my own personal hero, she's also a Spondylitis patient. Although she has lived with pain for a while, she was only officially diagnosed this past spring. Kate has already blown me away with her acceptance and determination in this fight. While I've tried few options other than intense modern medicine, Kate has tried to combat her pain alternatively with the help of a nutritionist, an acupuncturist, a massage therapist, etc. I admire her tremendously for that and, in a way, we've rounded each other out. While she's inspired me to find healthier solutions to this pain, I've shown a little tough love and made her take this disease more seriously. We're up against a lot, but together it somehow seems smaller. When either of us find something that helps, we rush to tell the other. For this reason and many others , I'd say we're one great team.
Kate has a wanderlust that's contagious and a passion for living that's simply made me better. Just this past summer, she travelled to Russia - a country she's studied in depth and always dreamed of visiting (kicked off by a special professor named Adrian Jones). With my own pain being at its worst over the past few years, I've let this part of me slip. Travel became something daunting and technical (how will I get my medicine overseas? Isn't it easier just to stay put? etc). But Kate reminds me of all the beauty there is in this world. She's helped me take life by the horns and cherish each day...especially each day without pain. For this and for so many reasons, I am infinitely grateful to her.
I could go on for pages, but I think I'll just let her words say the rest. Quite simply, anyone who knows Kate is better for it, so enjoy!
What is the year you were first diagnosed? How old were you ?
I was officially diagnosed with Ankylosing Spondylitis at age 23, in May 2010, but I had a rather drawn-out diagnosis. Last year I tested positive for the HLA-B27 gene and had sclerosis in my lower spine show up on an MRI scan. However, my rheumatologist at the time was reluctant to diagnose AS without being able to assess my MRI results over a longer period of time. This was really difficult—having this ‘maybe’ hanging over me—with no definitive diagnosis. I didn’t see my rheumatologist for months, and unfortunately heard nothing from the clinic. It wasn’t until I touched base with the SAA and met the amazing Maya, that I was motivated to contact the rheumatologist again, and received a definite diagnosis.
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
Feel. Whatever emotions are hurtling around, be it anger, sadness, self-pity—let yourself feel them, for now. But realize that a diagnosis is a positive thing. It’s an answer in a situation where there are so many unanswered questions. It is also a guide down a path towards treatment. Don’t take a diagnosis as a burden you carry, but rather a tool now in your possession that opens up the beginning of treatment and acceptance. And finally, the sooner you accept—the sooner you are on the road to getting the best help possible. Know that there is an incredible lightness once you leave denial behind.
Please explain a bit how your condition affects you. (for example: What are the symptoms and what is the hardest to cope with? Has the disease changed with time? etc. )
Physically, my lower back, neck and shoulders hurt every day, and my knee has been swollen and inflamed for 3 years now, despite surgery and steroid injections. Mornings are hard—I often need extra time for heat packs or to lie back down. It’s very unpredictable though: one day feeling as though nothing is wrong, the next morning holding onto walls to help myself walk. It is troubling to notice different joints hurting as the diseases progresses: in only the past 6 months, my jaw, hips and wrists are now all affected. There’s also the general fatigue that comes with an auto-immune disease: it’s hard to convey that heaviness; it is so much more than just being tired.
But it also deals quite a strike emotionally:
There is the fear of the ‘unknown’ when it comes to having a progressive illness, and one which affects people in such varied ways. There is just no way of knowing how or to what degree the disease will affect you, and it is hard not to look merely at worst case scenarios.
And the frustration—at the disease—which can be so closely tied to frustration with yourself: feeling sick of being in a body that throws some kind of pain your way on a daily basis. (But then I should be feeling fortunate—there are others in such worse positions than I. And on goes the rollercoaster of feelings!)
And the future: What comes next? How much worse will it get? Will I be able to accomplish the things I want to do, or should I change my goals to make them more ‘Spondylitis-friendly’—or is that succumbing to weakness? So many questions, and always absent a definite answer. Yet at the same time, I think those question marks make you determined to chase and hold what you can now—cherish those ‘good days’ (when you feel ‘normal’!) and jump (perhaps not literally:)) at all there is to see, feel and do.
Where do you get your strength?
Love from family and friends, dreams/goals, music & words.
If you could send one message to medical professionals around the world, what would it be?
Assume nothing: explain even the most seemingly basic things, and slowly please.Realize, and remember, that there is more than a patient’s physical well being in pain or under threat: emotions need the same (or more) attention as swollen joints. And when you say “any questions?”, please show some evidence that you really do want to/have time to hear what they are.
What are you most proud of?
I’m still chasing the same goals (studying law, history, language, traveling the world)—probably even more so because of the challenges AS has thrown into the equation. I’ve still got my stubborn streak. Learning to live in the moment. I love John Lennon’s quote: “Life is what happens to you while you’re busy making other plans.” With that overshadowing possibility that any given day could be struck down or lost to pain, you can’t say ‘maybe tomorrow’. Rather than thinking back or forward, I really know now what it feels like to register how good you are feeling at a particular time, at the time, and just grin at the beauty of it.
I'm living in New York, studying social work, and making time to be Maya: a daughter, a sister, a fiance, a friend, a writer, an animal lover and someone coping with 2 medical conditions (Spondylitis & Fibromyalgia). Every day I'm learning to live and love not despite chronic illness, but because of it. I treasure my readers, so please comment or write to me at firstname.lastname@example.org. Thanks for stopping by!