Paul's Heart

A Picture Is Worth A Thousand…Stares

This is probably the most recent picture of me that shows how “normal” I look.  Normal is in quotes because this is the outside presence of what everyone sees.  This was at a recent fundraiser for Lymphoma and Leukemia , of which I am a 24 year…soon to be 25 year… survivor of Hodgkin’s Lymphoma.

But underneath this outer shell, are many scars that show just what my body has been put through.

I do not normally give anyone an opportunity to see the various scars that I possess from head to toe.  Though some may have the attitude, “wearing these scars proves the warrior” I must have been.  And what was once just a reminder of what I have gone through, double in purpose as reminders of what might still be ahead for me.

Typically, the only giveaway that someone has gone through a battle with cancer, is the obvious hair loss.  But for many diagnosed before the 21st century, many of our diagnostics that we underwent, left us with physical scars, all over the body.  Myself, I have five scars from my diagnostic testing back in 1988 and 1989, but none so obvious as the one that spans my abdomen from my chest to just below my belly button.  For years, the only one who would even see that scar, would be my ex-wife.

But then, as I began having to deal with the ramifications of the treatments that cured me of my lymphoma, four more scars, the most notable, another lengthy scar, smack dab in the middle of my chest.  This came as a result of emergency open heart surgery to repair damage caused by extreme levels of radiation therapy.  Normally, this type of incision would travel the entire length of the abdomen and be called a “zipper.”  My “zipper”, along with the several scars from chest tubes have left me even more self-conscious about my physical appearance.

I do not like being the center of attention, in spite of the publicity I am constantly exposed to.  But living in the deep south as I currently do, I spend a lot of time trying to keep cool.  One of my favorite things to do, and pretty much the only exercise I am cleared to do, is walk.  I am lucky to live near a beach, so my walks are conducted there.  On very warm days like today, I will take that walk without wearing a shirt.  Which of course exposes the “battlefield” of scars on my torso.

My photo at the top of the story does not cause much of a reaction, whether I am at a public function, at the gas station, or the library.  But today, for whatever reason, a much more “touristy” day on the beach, I attracted a lot more attention than what I had wanted.  I could see their stares and then I have that awkward thought, should I stare back at them with the same mortified look?  Or should I just blurt out the answer to the question that I know they are thinking?  They will forget all about my appearance within a few minutes, but if I react enough to their stare, I know that they would not be able to handle what really was behind those scars.  Their reactions would probably be the same as the many I have heard from all the doctors and nurses that I have seen over the years during my survival, “he’s so young though.”

My age did not matter when I was diagnosed with my cancer.  My age did not matter when I underwent a double bypass caused by what I was treated with.  But what people need to understand, at least in my case, my scars are not just to my physical appearance.  Several of my scars still hurt years later, with the simple touch causing me to wince in pain, reminding me of what I have been through.  And with every reminder from my scars, the potential is quite real for even more scars.  Lack of knowledge of long term cancer survivors, left other issues untreated while performing the bypass surgery, leaving me with the need some day, to still need to be corrected.  And then of course, there is the continual deterioration of my body to begin with caused by the various late effects.

I do not normally spend a lot of time looking in the mirror, but following the stares I received today, I did take an extra moment to try and convince myself that the scars were not as bad as they appear to others.  But then I saw it, I saw something that I had really not paid attention to, in spite of it being pointed out to me years ago, when it was actually diagnosed.

This is clearly not what I look like.  I will be honest, I have never looked like that in my life.  However, I should have all the same muscles on my body that this “normal” male has.  I was told years ago, that I have suffered severe muscle loss over the decades from radiation damage from my treatments.  I used to think “wow, you can tell that just by looking at me?”  Today, because of other observers, I noticed it myself.  After I got passed my scars, I could see it.  I do not have full pectoral muscles (breast) anymore, seemingly just the lower half of each breast.  I do not have rounded shoulders, rather just chunks of muscle mass.  I have defined biceps and triceps but that is all there is to my upper arms.  And then, there is the muscle loss that I cannot see, those behind my back.  I am told of muscle loss in my shoulder blades that have to potential to lead to rotator cuff with any sudden torque of my shoulders.  And with the majority of the neck muscles in the back of my neck lost, as many long term Hodgkin’s survivors have something called “drooping head syndrome”, though fortunately for me, and only after repeated physical therapy to strengthen the muscles on the front of my neck, have I avoided this diagnosis.

Again, with my shirt on, no one will ever notice.  And of course, the snarky comments will come out, “just keep your shirt on then.”  It is not about the shirt.  And only if you have gone through what I and many others have,  can you understand it is more than just about the scars.

I thought I had done better with managing my reactions to the stares I get.  Maybe I underestimated myself.