As the evening cooled after a hot Australian summer’s day I ventured out for a walk. My mind quiet for the first time in a long time, I reflected on my hopes and dreams for 2023. I thought about my plans to improve my fitness over the summer, and whether I would be able to play another season of ice hockey in the coming year. As I reflected on my childhood sport of choice, a sport so foreign and unfamiliar to many Australian’s, I thought about how natural it felt to be back on the ice again. How liberating it was for my illness to take a backseat for one hour each week. Sure, it demanded its interest in the days to come. But for that hour, that precious moment, I was free.
I remembered back to my days in the Australian Ice Hockey League and how sick and paralysed with nervousness I would feel before every game, especially home games. The local rink filled to capacity, spectators standing just centimetres from the boards and the energy that surged through the crowd after a goal or a big hit. I have played in almost every rink in Australia, and there is nothing like the atmosphere created by the Canberra fans. But the nervousness wasn’t just about playing in front of a crowd, I was afraid of being hit. Ice Hockey is a physical, and at times, brutal sport. I was never the biggest player and I had to rely on skating, speed and positioning to keep me out of trouble. But there is one guarantee in hockey. You will get hit. This is a reality you must accept, regardless of whether you want to get hit or not. So you need to learn how to take a hit well and get back up. As a kid I spent hours learning to skate, I also spent hours learning to get back up again. Life is no different, and especially life with a chronic illness. I’ve had to learn how to get back on my feet again and again. It is not fair. It is not fun. It hurts. But there is something in me that tells me that getting back on my feet is still worth it.
There is no denying that Still’s has hit me hard since my diagnosis. And as they say in hockey I’ve been getting a lot of hospital passes and it has seen me on the proverbial ice a lot. I’ve been discouraged and overwhelmed and have felt like I’ve got nothing left to give. But I’ve felt like this before, and I’ve made it through. Rebuilding after flares or setbacks is hard when you look at how far you have to go or how far you could fall if you miss a step. But like hockey, life is a team sport. I know I’m not alone and I am thankful for the team that I have around me.
Getting back up
Today I went for my first run since October. 1km — 1 Step towards getting back up.
This first step was dedicated to Ava, and all those living with Maple Syrup Urine Disease. I had the privilege of meeting Ava’s mum Tammie (another incredible RVA ambassador!) this year and to learn more about MSUD and how Ava’s life was saved through the National Newborn Screening Test.
You can learn more about Ava’s story and the Newborn Screening Test on Rare Voices Australia website.
L-R: RVA Ambassadors Tammie, Andrew, Katie, Lachy, Renae & Beck
What is Maple Syrup Urine Disease?
Maple syrup urine disease (MSUD) is a rare inherited disorder that affects the body's ability to process certain amino acids. Amino acids are the building blocks of proteins, and they are essential for the proper functioning of the body. In people with MSUD, a deficiency in certain enzymes leads to an accumulation of toxic levels of amino acids in the blood and urine. This accumulation results in the characteristic sweet smell of the urine, which gives the disease its name.
Symptoms of MSUD typically appear in the first few days of life and can include vomiting, poor feeding, and lethargy. If left untreated, the accumulation of amino acids can lead to severe neurological damage and even death. Treatment of MSUD involves a strict diet that is low in protein and specific amino acids, as well as regular monitoring of amino acid levels in the blood. With proper management, people with MSUD can lead normal lives. However, MSUD is a lifelong condition and requires careful management to prevent complications.
Sending my love to the MSUD community.
Great stuff mate. I think those genetic screenings are done at my Dad’s lab!
Tim, have you seen Penguin Bloom? it's also a book, based on a true story. Same becomes paraplegic after an accident in Thailand. I imagine it similar to you adjusting to life and learning what your limits are with Still's disease.
Thanks so much for sharing and providing insight. To quote Grace Tame from an interview that I read about this morning after finishing her book - "When we share, we heal, reconnect and grow as individuals and as a united, strengthened collective. History, lived experience, the whole truth, unsanitised and unedited, is our greatest learning resource. It is what informs social and structural change".