So... I like to call myself a professional patient; I mean I think that is fair considering I have practically grown up in hospitals, some of my greatest heroes are doctors, and I just had my 38th surgery a few weeks ago. Life as a professional patient can be pretty rough obviously, the pay really isn't good, but you do get to utilize a lot of vacation time! Of course, it just depends how relaxing and refreshing that vacation time actually is. Take this pat winter break for myself for instance... I anticipated spending 6 glorious weeks relaxing and enjoying my freedom away from school, and instead I ended up spending it chalk full of doctors appointments and authors. By the end of January, I ended up having my 38th surgery, so it's safe to say that I didn't quite spend my vacation the way I originally planned or anticipated...
But, that's okay. Even if it was spent dealing with doctors and recovery time, I still wouldn't trade my life for what it is. Would I like to not have to deal with so much medical stuff, yes of course I would. But, if I didn't have to deal with all my medical stuff or at least most of it or maybe even just some of it, would I still be the person I am today, and would I even like that person.
As hard as it is living with an invisible disability or even being labeled disabled, it's hard to imagine life any other way, and I honestly don't know if I want to.
Courtney, Not sure you could say things more beautifully about your life. That last sentence of yours speaks volumes. I can relate. I am looking at possibly eye surgery #16 on top of my neck fusion last year, etc, etc. One thing I have learned through my Stickler's is that I have a heart of compassion and an ear for others that I may not possess without having lived the challenges I have. My mother just passed at 84 years of age after many challenges. She was not formally or officially diagnosed with Stickler's, but with all the markers she possessed it would be easy to say she lived a life with Stickler's that was not easy. She was a true inspiration to me and others. I will continue to keep you in my thoughts and prayers,
ReplyDeleteSincerely,
A fellow stickler,
Carl