Second Chances

www.shawnmcgillmsw.com

December 5, 2016.  I turn 40 years old.  To some this may seem quite insignificant but for me this is sort of like a rebirth, a second chance at life, and showing even some of the most well known experts that odds can be defeated.

Just three days from now will mark the 10 year anniversary of my mini stroke.  It was through this experience that a Congenital Heart Defect was detected.  I'm not sure how it was missed all those years but I have my suspicions that I will keep to myself.  Regardless, within two years I was undergoing open heart surgery at Cleveland Clinic and the past decade has been marked with countless appointments in two states, surgeries, recoveries, and medications I thought would either kill me or make me permanently glow.

Through it all I think I have persevered quite well.  I try hard not to complain, even when most days I don't feel like getting up or talking to anyone.  I'm tired when I wake up and I'm tired when I go to bed.  I have missed a lot of things and it drives me crazy.  This never seems to get better but there are always peaks and valleys.  While 40 seems like a small number to some, it's pretty significant to other people like me.

One of the first specialists I was sent to see was an "expert" here in Pittsburgh, the city known as the medical mecca.  I underwent all of the necessary medical testing to be told there was nothing he would or could do for me.  While he never said the words "liability", I had a funny suspicion he wouldn't help because I was just that.  Since I was born with a hole in my heart that had gone undetected for more than three decades there were numerous complications.  There was right-side enlargement of the heart, damage to my lungs, and an aneurysm in the aorta.  Being the person (and advocate) that I am, I persisted in asking what I was supposed to do and what the prognosis was.  He indicated that ordinarily people with such a condition do not survive and there was nothing he could do for me.  I walked out of the hospital that day and began researching other hospitals, including those within and outside of the United States. 

As you can imagine, mentally the clock of the Grim Reaper began ticking for me.  When I finally had heart surgery I wasn't at all afraid to die, in fact I was ready.  All these years later I have been and I am still ready to die.  Now, this doesn't mean that I want to, it just means there's a level of preparedness and acceptance for what is.  Cleveland Clinic saved my life but there is permanent damage and there is no cure for Congenital Heart Disease (CHD).  Fortunately, all these years later, I am connected with a wonderful clinic here in Pittsburgh that specializes in the care for adults with CHD (thank you Val).

What many also don't know is I've carried a level of survivor's guilt along the way.  In 1998 my nephew passed away from a Congenital Heart Defect.  This was a crushing blow to our family and something I hope people never have to experience.  There is no level of understanding or explanation for why a child passes away.  For me there has long been no level of understanding or explanation for why I would in turn live but I have come to terms with accepting that I can no longer question why things do or do not happen, especially when they are out of my control.  I think of my nephew (and sister) all the time and I hope that I can honor him through work and education for as long as I am on this earth.  More children die each year from Congenital Heart Defects than pediatric cancer and HIV/AIDS combined.

This past weekend I was graced with a surprise party to celebrate this monumental year.  I took a moment to share my story, to not only talk about the relevance but to also thank those who have walked the journey alongside me.  I recall talking about how some people fight to stay young with each passing year but some of us just fight to grow old.  I'm looking forward to wrinkles and grey hair.  I also talked about how it is vitally important, especially to those who work in the human service field, to always be aware of what they say.  Words can never be retrieved, even a "sorry" cannot help a person move from a position of fear.  Be very careful.

I will spend the day, my 40th birthday, doing what I always do...another day of work.  This is my meaning and purpose, and I believe my reason for being here.  There's still much more to be done and I am honored to be a part of it all.  I will balance the day with my family, clogging my arteries with my favorite food (pizza) and attempting to ice skate without breaking another hip.  Ironically, my cholesterol is great!  In the meantime, my gift to myself and to other warriors is to make a donation to the Adult Congenital Heart Association.  Persevere my friends, and always love and care for yourselves even if others cannot see or understand our invisible disease.