Finding Joy, Acceptance, and Identity Beyond Chronic Illness
Written by Ryan Cassata, Owner & Founder of Rock the Pigeon, Singer-songwriter, Trans Activist
(Content Warning for Medical Discussion and Photos including Blood & Needles)
Today, I celebrate making it through the most medically and physically challenging year of my life. Although I’m not anywhere close to being cured, have failed several treatment plans, haven’t shown signs of improvement (yet), and have shown signs of getting sicker, I deserve to celebrate my mental strength and resilience. I deserve to celebrate how my husband, family, partners, and friends have shown up for me. I deserve to celebrate the way I have shown up for myself and the way I’ve navigated the medical system, especially as a trans person. (Y’all know I’ve dealt with some transphobic doctors)
I have been in constant pain 24/7, 365, for an entire year. I’ve seen over 25 doctors. (Thank you to all the doctors on my current team.) I’ve refilled my pill organizer 52 times with supplements and medications to keep me going and to fight tick-borne illnesses and autoimmune disease (and who knows what because my diagnosis is still unclear). I’ve been hooked up to IVs over 75 times. I’ve had over 30 blood draws for labs. (I’m no longer afraid of the sight of blood.) I’ve had over 100 shots. (I’m no longer afraid of needles and can do my own shots.) I’ve been to doctor’s appointments several times a day, several times a week for a year. I’m exhausted, but I guess if I handled one year like this, I can handle another. (Someone may have to remind me of this on bad days.)
I’ve had low mental health moments. Sometimes it was scary. But I always quickly pulled myself back up. Doing more therapy, leaning on friends, meditating, making more art, etc., has all helped.
Mentally, now, I’m doing better than I ever have. I’ve been practicing acceptance. Accepting that I’m not able-bodied has been a challenge, but I’m finally here. I’m not afraid to ask for help or accommodations anymore. I understand that my illness is invisible to most, and I may have to explain it to strangers or even friends. I’ve accepted that I may always be in pain, that this illness may always exist, that I may not “beat” this, that it could get even worse. I’m closer to living in the now and not future tripping about if and when this will kill me or not (one day, I’ll stop future tripping). I’ve learned that despite great pain, I can still have a beautiful life with so much joy and love. Pain and joy can coexist. They always have for me. They do now.
I’ve learned that my dominant identity cannot be as a patient. Before, I am a mystery patient; I am an artist; I am a singer; I’m a writer; I’m a friend; I’m a dog dad; I’m a lover; I’m a husband; I’m a son (I feel closer to my parents than ever); I’m a trans and queer person. The list goes on…then I’m a patient. I will not stop doing the things that bring me joy and be a full-time, chronically ill person. I still need to live my life as much as possible. I know my limits (no one else does.)
I’ve written so many songs this past year. They are the most meaningful to me right now, and I can’t wait to share them with all of you. Songs have helped me so much. Music has helped me so much. Being around my band has helped me. Being in the studio creating has helped me. Playing shows and meeting many of you. Your hugs have all added up and have given me much strength.
Anyway, thanks for being here. Thanks for cheering me on. Thanks for being part of my journey. Thanks for checking up on me.
Note: *Many around me know I’ve had minor autoimmune disease symptoms for the past decade (like very little saliva, migraines, neurological celiac, where I can’t walk if I eat gluten, etc). I count Oct 2024 as a year of being sick because I’ve been constantly in pain since October 2023 when my neck pain set in. (Varies from 4-8 on the pain scale). Since then, my health has been a constant battle with many strange and often debilitating symptoms. It’s hard to manage, but I am somehow managing it. I don’t have “normal days” anymore; I haven’t had one in a year. But I’m closer to accepting that this is my normal now.”
I am striving for chronically ill & chronically chill.
I hope this post helps someone.
If you’re going through it too, please know that you’re not alone in your struggle.
Thanks for reading,
Ryan
ATTENTION! The california board of pharmacy is trying to take away the medications that me and so many others need. Please sign the petition here: https://www.stopthebop.com/
The post Chronically Ill, Chronically Chill: Celebrating Strength, Resilience, and Love Through a Year of Chronic Illness and Pain appeared first on ROCK THE PIGEON.