Settling into Sydney
The joy of coming back home to Sydney is that I finally get to start settling in: organizing my room so I’m not living out of a suitcase, buying groceries (we have an egg shortage here too!) to test out new recipes from abroad, building a community that will support my personal and professional lives. While there’s excitement to being my life here, there’s also a bit of fear: what if this all doesn’t work out? And hidden beneath that is the deeper concern: what if no one likes me?
Then there’s the parts of settling in that aren’t scary but just not fun - they’re doable but drudgery: organizing my Australian tax info, filing my US taxes…and getting my healthcare organized.
It’s been a bit of a process getting recommendations for Australian cardiologists, let alone ones based in Sydney, who are knowledgeable about ARVC since it’s such a rare disease, but after several months I was able to book any appointment with a sports cardiologist.
Today I followed up with her office to update my appointment details (I’m a true Aussie now with an Aussie phone number!). They asked me to send over my medical records which is typical for any new doctor’s appointment and a process I’m quite familiar with given the multiple rounds of doctors’ appointments last fall.
I logged onto my patient portal to download and send my medical records, the EKGs, genetic history, MRIs, and pages and pages of progress notes, and the moment I began to scroll through the doctors’ progress notes, I started to cry.
None of their notes were new - in fact I’d read them multiple times to reaffirm that I was healthy, that I am disease-free. But reading through their words again brought back all the emotions and feelings associated with that time period of my life. Sadness for the woman who had her life completely upended. Anger at the doctors who misdiagnosed me and made me distrust my body.
The thing is…I’m most angry about having to make decisions based on knowing that I am at-risk for the disease. I wish I could just make decisions about exercise and physical activity without worrying about how it may potentially harm my future health and quality of life. I wish I didn’t have to have these annual cardiology appointments to check to see if the genetic mutation has expressed into the disease, to see if running has damaged my heart. I want to throw a temper tantrum, pound my fists on the floor, and cry out “this is so unfair!”. Life is unfair - I know that. But that doesn’t make it any less unfair.
I realized I’m still grieving - grieving what happened and mourning what could’ve been. And unfortunately the only way through is to feel — to express and release all the emotions that have been suppressed deep down inside, no longer content to be hidden away and ignored. And now that I’ll finally be in one place, maybe now is the time to settle in and sit with all the messy, valid feelings.