Walk a Mile In Another's Shoes

This crazy looking kid is a picture of me.  I probably was no more than four or five years old at the time.  From the time I can remember I always thought and felt like I was a boy.  I suppose it didn't help much that my parents gave me a traditional boy's name but I know that had nothing to do with the way I felt growing up, it had everything to do with my father's request for the name.  As a child I was unaware of labels but I was blessed to have a family who allowed me to be who I was, and do the things I loved.  I was Shawn McGill and today I am still Shawn McGill, although through the years there has been some diversion in an effort to fit in to societal "norms". 

I grew up in a very rural, small town in Pennsylvania.  It was a blue-collar, God loving and God fearing community.  By the time this picture was taken I felt "different" but I didn't quite know what that meant.  I started kindergarten at the age of four and almost immediately hated school.  I was made fun of for my name and made fun of for the way I looked, even my frizzy hair was the butt of jokes.  Kids were quite creative and mean with their words and even their rhymes and songs about my name, looks and mannerisms.  Soon I found any reason to fake an illness or fight my mother tooth and nail to not go to school.  I soon became the most awful student and my grades were failing or borderline failing.  This sent me to Special Education and yet another reason to be segregated and made fun of.  To this day the memories turn my stomach and give me chills. 

I can't say it was all bad.  There were a handful of kids who were very kind.  Those kids turned into kind adults, of whom I still have contact with, even on Facebook.  Nevertheless my path of educational destruction continued through middle school until I found high school tennis.  I loved playing tennis and I made the high school team.  Mind you, this is traditionally a game for the upper class and we were anything but that.  The game gave me a reason to get good grades and really, it wasn't that difficult for me after all.

Still, at the beginning of high school I had my boy's name and I looked and acted like one.  I have never publicly talked about my next experiences but the recent discussions from people around the world on the need for "some people to get over" the divide in the nation and accept perceived threats is unbearable at this point.  I actually read from one person, who I have loved dearly, that discrimination and hatred has always been a part of our history so we need to accept it.  I cannot and will not accept it. We know better. 

While my grades were very good in high school, living life was not so easy.  There were two distinct incidents, both at the hands of a high school football star, that would have been considered sexual assault.  The first was him pushing me against the wall forcing his tongue down my throat while the other involved him grabbing my butt.  Both times he indicated he was going to "teach me" what it meant to be a woman.  Years later that same star was charge with rape, go figure.  Another incident involved a boy brutally punching me in the face and saying "stupid dyke".  I never told anyone but my parents just knew I had been punched in the face because it was pretty evident.  Letters were sent to my parents, warning them that I could be "a lesbian" (insert scary music here).  It was no Sweet Valley High, that's for sure.

Tennis was my ticket into college, and college was my ticket out of that town.  I flourished and I vowed I was never going back.  While I have gone through periods of trying very hard to be someone I was not, I quickly found my way back to who I am.  And you know what, I'm pretty proud of who I am and who I have become. 

Recently I've had many people reflect on the Christian values of my dear grandparents, who were very involved in our lives.  I'm not sure what the purpose is because I know full well they were God loving people.  I also believe in my heart of hearts that if they were here today they would be proud of me.  They would be proud of the business I have grown, they would be proud of the accomplishments I have achieved, they would be proud of the work that I do, they would be proud of the family I have, and they would be proud of the person I am.  Most importantly they would be proud that I have not been involved in any scandals or fallen to drugs or alcohol.  That's how bleak my future as a child was, and I know for certain there were many times they too were frustrated and concerned.   I recall many times my mother calling them, crying for help with me. 

My purpose in writing this is not to paint a "poor me" story or to represent any one group of people.  I am not a spokesperson.  My purpose is to help even one person to perhaps stop and think what it is like for someone, or maybe some people, before speaking out of context.  As an adult it concerns me to think that anyone is okay with the idea that violence towards a person because they are different is okay.  Violence is not just physical but it does include words as well, so be very careful.  It concerns me that anyone would be okay with a person not receiving healthcare benefits, marriage equality, or their long term spouse not having the right to make healthcare decisions on their behalf because they are not just like you.  Yes folks, this has all been a part of my history and the history of many other people.  We do not want to see Constitutional Rights be revoked and we do not want to see a platform for discrimination and violence built for any group of people.  So remember, when certain comments or statements are received it does evoke very strong reactions in some people.  You have not walked a mile in our shoes and we have not walked a mile in yours.  At some point we must find a common ground without implementing clauses of the Constitution, which founded this country. 

Doing Right vs. Doing Wrong

This is a picture of our dog, Duke.  Duke came to use several years ago as a senior dog with some complex medical issues.  He had a significant history of trauma, with his jaw and ribs broken and a BB bullet still lodged in his groin area from where he had been shot.  Duke was only a few pounds with no teeth and wanted nothing more than to be held and cuddled, constantly.  He was also a very timid and shy little dog at first, cowering if you placed your hand over his head to pet him and even sometimes wetting himself.  That subsided after a while as he learned to trust us and know we would not hurt him.  What never went away was his fear (not hatred) of children, specifically older male children.  We gave Duke as much love, care and security for as long as he remained on this earth.  Had he not encountered a serious of loving, compassionate people along the way who did right, he would have been euthanized.  His life was valuable, for him and for us.

When I think about Duke I think about the lives of so many people I have supported over the years.  People who have significant histories of trauma, for which some providers may not even be fully aware of.  Trauma is real, and can evoke very strong emotional reactions that manifest in what others describe as very challenging "behaviors".  Now, I'm not comparing my dog to the people I support, but I'm using him to draw a parallel.  For Duke, his manifestation took the form of lunging at boys and barking in defense if they walked into a room or looked at him.  However, if he was placed on my son's lap somehow he knew he was safe.  We had to work with Duke and my son.  This took a lot of time and patience, and we could have easily given up on Duke and sent him off somewhere else.   We didn't, we worked.

In my work there are two terms I do not readily accept, or I respectfully challenge people to think through.  The first is, "it happened out of the blue" and the second is, "they are being attention seeking".  Let's first think about "it happened out of the blue".  Nothing happens out of the blue.  There are always reasons for something occurring but you may not know what these reasons are.  A person is involved in a car accident, which seemed to happen "out of the blue" but the real reason was a person ran a red light or they hit a patch of ice.  In the lives of people it becomes a little more complex.  Someone may scream (or bark) "out of the blue" but really they are terrified.  Think about it, screaming does equate a sense of fear and barking does parallel a defense mechanism.  As far as the statement "they are being attention seeking" my response is generally, "why do they need to resort to what you describe as very challenging behaviors in order to get your attention?"  Ordinarily this response is not well received but it is relatively thought provoking.  If someone needs to hit you in order to get your attention then it may mean you missed something.  Maybe it's a fragment in the relationship, maybe it's the meaning or communication behind the hitting (i.e. pain, needing something, etc.) or maybe it's a combination of both.  I have yet to meet a person who listed their goal as purposely tormenting their parents or their staff. 

There are times when spoken words do not match body language or manifestations of how a person will get their needs met.  For example, a person may say their sexual interaction with a housemate or another person was consenting (when placed in a room with that person and asked the question) but in recent months their mood and behavior has changed.  Sometimes this happens so much so that behold, a new behavior goal is suddenly created.  We have to dig a little deeper folks, and do right by people.  This means sometimes making some people, or a lot of people, really mad at us.  It has been my experience that as soon as you have separate conversations, a lot of information starts to come to the surface.  Think about it.  If someone was coercing you into sex would you be honest, in front of them, about what was really happening?   Don't do what's easy, do what's right.  This holds true for then ensuring people are provided a safe place and treated with respect without being subjected to repeated trauma.  Don't think that people are just going to get over things and "move on" living and working as normal.  People have thoughts and feelings.  I encourage you to think about this, if your son or daughter were sexually coerced by another peer at school or in their dorm at college, would you advocate for separation and support or would you say "business as usual" and move on?

In order to do good work we have to make efforts to put ourselves in another person's shoes and attempt to walk a mile.  It's easier said then done.  Do you know where they come from or what they have experienced?  Do you know how they view the world?  Do you know what they need in order to feel safe and secure?  And are you doing what is right to honor a person, and provide a sense of safety and security?  Or are you doing what is easy and not advocating for a person or treating them as just another behavior problem? 

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.