Anniversaries (are bittersweet)

Wow… hi friends. I haven’t posted on here since December, practically a lifetime ago. So much has changed since December; I’m several classes smarter, several concerts more fulfilled, several months lonelier (thanks COVID), and wealthier in countless experiences and images. If you’re reading this, as the world feels like it is simultaneously falling to pieces and yet restructuring in much needed ways, I hope you’re coping okay. I hope that, if nothing else, you know that you are loved by me; even if we have never spoken.

I’ve taken to doing my best to process most of my emotions in a personal journal instead of publicly on this blog, however I feel that this time of year is particularly important to address. This week marks the three year anniversary of a hospital admission that both saved and completely altered the course of my life. In a month’s time, I will celebrate, if you can call it a celebration, the three year anniversary of my feeding tube placement. I never wanted a tube, and if I’m being honest I still don’t want one. I dislike all that it represents: a constant reminder of all of the ways in which my body has failed me. On the flip side, however, a feeding tube has opened up my world in ways that I could never have imagined. Pre-tube, my life was very small: largely consisting of IV fluid treatment, physiotherapy, and a multitude of visits to specialist doctors who could never diagnose, much less help me. Post-tube, I think I can count on one hand the number of times that I have visited the ER. I rarely even see specialists anymore. My physiotherapy journey has progressed by leaps and bounds. I go to school. I go to concerts. I run. I go hiking. I go camping. I have a dog. I have friends. I have hobbies. I make art.

Life with a feeding tube is, in my case, objectively better than life without, and yet I still have a complex web of emotions surrounding it that I work constantly to untangle. With return to a sense of quasi normalcy, comes an insatiable craving for complete normalcy. I do not just wish to simply be functional, I wish to be healthy, and yet I may never achieve that. I can never go back in time and erase the past 7 years of my life, and I can never pretend that my body comes with the usual 21 year old lack of limits. I am, and always will be, ill to some extent. Acceptance is a complicated journey that I navigate daily. As I grow more functional, I learn to balance two sides of myself that are very much at odds: the free spirited 21 year old, and the rare disease patient. Neither are me, and yet both are me. Sabina loves to rock climb, but she needed years of physiotherapy to get there. She loves vegan ice cream, but some days her only calories come from a pump and a bag. She loves to stay out late with friends, but can pay for it dearly in fatigue and pain for up to weeks afterwards.

They say that balance is the key to life; I suppose that my balance just looks a little different than most.

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