Sunday was the last day of the ACHA conference and boy, let me tell you how sick and tired of people I was by the time I woke up Sunday morning. Don't get me wrong - I love absolutely everyone I met this weekend, which is saying a lot considering how much I normally enjoy sitting around and judging others from a dark corner, but there just comes a time at a conference - any conference/convention - when I just hit the PLEASE DO NOT TALK TO ME wall. I need a sign to hang around my neck "Do Not Feed the Rachael...with conversation."
I wish I could share my notes with you, but alas, I'd be cheating and copying off my friends notes like 9th grade French class because I was zoning out through a lot of the panels. There was just a wee bit much lecturing for me...pie charts, statistics, bar graphs and an overkill of Power Point. I stopped taking Power Point seriously by 11th grade/1999.
It's not that I don't take an interest in my heart or the goings on of the medical community, but there comes a point when my brain just can't absorb the information. Like algebra.
Let Auntie Rachael get serious for a moment, kids.
I've worked very hard to have a certain level of detachment and distance when it comes to the world of ACHD and I need to maintain that distance for the well being of my sanity. It's not that I do not care, it's that I cannot allow this world to consume me and my defect define me. Some people really get a kick out of every aspect of the CHD world, from keeping track of every shred of medical breakthroughs, advocacy, to molding careers in health care. I just can't do it.
In that same vein, it may come as a surprise to some of you to know that even making friends within this community does not come without difficulty.
The truth of the matter is, I don't enjoy putting myself out there to others because I do not want to lose you. Letting you into my life...into my thoughts, caring for you...and then potentially losing you? It weighs on me. To be honest, it makes me feel my own mortality all the more vividly. To laugh with you, cry with you and share our experiences, nostalgia, silliness...always with that little obnoxious voice in the back of my head, Maybe they won't be around the next time...
The truth is this shit is scary and depressing.
Oh, sure, technology is catching up but will it save me? Will it keep me alive? Will my quality of life improve over time, or diminish with age?
These are the questions that fuel my stress, and I realistically did not expect to find answers at the conference. Unsurprisingly, no one had answers to these questions because they prey on everyone's mind, including our caregivers.
HOWEVER! What I did take away was a plethora of new friends and a new sense of hope for my future. For the first time in my life I understood that there will always be someone who empathizes not only with sincerity but with experience. I also got to witness TEAM RACHAEL! rock out in such a way that made me the proudest professional patient in the history of chronic illness. Y'all throw a good hoedown, kids.
My new friends are awesome and with any luck, we'll remain friends for the rest of our lives.
Yes, I have lost friends and peers. I have lost children once previously in my care. Yes, continuing to forge new friendships comes with a certain level of trepidation.
I push through it, though.
The purpose of life is to live it. Like a boss.