Our featured patient-family story this month is from Dana King, otherwise known as “Trach Chic” in our global tracheostomy community. Dana shares her journey about what life is like with her tracheostomy, which she calls her “enabling disability”. We hope that you find her story as inspiring as we do at the GTC, and invite you to like her Facebook page “Trach Chic”, (https://www.facebook.com/trachchic), where you can continue to follow her journey.
Dana King shares: “I didn't choose this journey, this journey chose me. Looking back 24 years there are moments I remember most and many of them surprisingly have nothing to do with my trach. The lesson is not that it is not important, the lesson is that it does not define me. My trach does not define my childhood in Hawaii, it does not define my family, it does not define my college experience, it does not define my career, and it does not define my marriage. However, all of those things have and still are defining my trached life. I very well may never get this trach out and I am completely at peace with that. It is my enabling disability, the greatest accessory I could ever ask for.
I was born in September of 1991 with tracheoesophageal fistula, diagnosed within hours. Severe strider set in by two months and a trach was put in. It was later diagnosed as bi-vocal cord paralysis. My vocal cords are paralyzed shut. They promised it would be out by 2, then 7, then 12. At 17 after a long pre-op, I chose to keep it for a better quality life. The BVCP has been a gift in many ways, mainly it has afforded me the ability to speak clearly without a PM valve. I use no accessories on my pediatric Shiley uncuffed sized 6.5. With a tight stoma, I first surfed a wave at age 5. By age 7 I was suctioned myself and started changing my trach by myself in my early teenage years. By the end of study abroad in college, I had weaned myself away from my suction machine completely, moving home to my now-husband without one. I now work in public television and radio broadcasting saving up for our own house here in the Hawaiian Islands. In college they assigned me an undergraduate dissertation to complete by graduation that encompassed everything I had learned for my sociology degree on a topic that drove me. Nothing caught my attention or seemed like a more fun challenge than studying long-term tracheostomy tubes in society. I finished it and now give it away as part as my Facebook page, Trach Chic, where I blog about my fully functional adult life with a trach.
Today, any trachie or trach family and caregivers are welcome to a copy of my dissertation, titled “The Enabling Disability: Applied Social Theory of the Lives of Individuals with Long-term Tracheostomy Tubes”, by simply messaging me thru www.facebook.com/TrachChic.