Wednesday, June 13, 2018

Experienced Sea Captains & Me

I believe I owe everyone an apology. I have been less than honest with the portrayal of my day to day life on social media. I have painted a picture of perfect health and happiness. Followers, friends, and even family often forget what I went through, and continue to go through because of this. I don't blame anyone but myself for not expressing adequately the reality of my ongoing struggles with disease. I put on a good show, but the reality is I still wrestle daily with my conditions. Let me explain:

When ones life pre-miracle was a constant downwards trajectory, both the highs and lows of recovery all seem so manageable. My lowest day now is still better than a good day pre-transplant. (So why wouldn't I smile?!)  This in no way means I do not continue to suffer - I will deal with daily symptoms from the damage that was permanently done to my body for the rest of my life. It simply means, I function at a level of misery many would buckle under - It's just what I am accustomed to.

Imagine this: If you put a sea captain who survived a typhoon in choppy water it may seem he easily navigates these conditions. In reality, it is still difficult, he has simply dealt with worse and is more equipped to deal with the treacherous water conditions than another captain who has never seen a wave. 

Yes, I smile, I laugh, I explore, and enjoy. My Instagrm posts are filled with excitement and happiness. Simply put, I am thrilled to be alive (even on my roughest day) because it is still so much better than where I was. I was dying. Anything better than that is a miracle to me - I just don't see the point of complaining about my current condition after what I survived. My aching joints, my undigested food, my so-so lungs, and my okay heart, all seem so miraculous! I'm enjoying every moment with renewed vigor because I never know when this bonus life will end. I live on the edge of a knife, constantly awaiting the tip. I do not mean to glorify my recovery or paint a skewed picture of my reality, I am just trying to make the most of this glorious epilogue. 

The truth is I am happy, I do feel good, and I have seen vast improvements in my health. I feel like I was given my life back - but keep in mind that is relative to literally being kept alive by tubes and tanks. While I am now functioning at a level of health that seems "normal" to the outside viewer, I am still struggling. As the experienced sea captain, I am simply used to the turbulent water conditions. Rejoice with me, but also understand my situation isn't what you can simply see from the external view.

My health will still be a life long struggle - However, I now have time to enjoy the ride!