P is for Perception

Perception.  What is a cancer patient supposed to look like?  How do others perceive me?  How do I perceive myself?  These questions affect me all the time.

I see others in the infusion room that are my standard perception of what a cancer patient is supposed to look like.  I see people with ravaged bodies, devoid of any body hair.  I see people covered in blankets while the poison drips into their blood.  I people comforting and trying to help their loved ones through this horrible time.  I don't see myself in that place.  I feel odd, bopping into this room, relatively upbeat, walking with no problems and receiving my shot with no side affects.  I feel out of place in this room, as if I don't belong and that these are the real cancer patients and I am just a poser.

I worry about how others perceive me.  I know it probably seems conceited for a 47 year old man to worry about how others look at him but I have a problem with my (almost certainly incorrect) perception of how others  perceive me.  I feel people expect me to be strong and to bear up under the pressures of the disease.  I worry that others question the legitimacy of my disease because I, at first glance, look to be be quite normal and healthy.  I want others to know that I still suffer and my disease is not just sunshine and rainbows but, at the same time, I hate the idea that others know that I suffer.

I am stressed by the changes that the cancer has wrought on my body.  I have lost 30 pounds and dropped two inches off of my waist and feel like I have lost what little muscle mass I once had.  I am nervous in the locker room before a hockey game that others who don't know will see my colostomy bag and behave exactly like guys with no manners often behave.  I am nervous about the possibilities of more bags and tubes as my disease advances and yet more locker room issues.  I hate the look of the AV graft in my arm and the bizarre shape that it makes under my skin and don't want others to see it.

I perceive myself in different ways at different times.  I perceive myself as a weakling when I need to have my wife drag my goalie gear bag to the car after an exceptionally tough game.  I perceive myself as a strong person when I struggle to walk fifty feet in the ICU after 3 days of surgery.  I perceive myself as disfigured when I see the body modifications that have changed my body from what seemed 'normal' to somewhat bizarre or freakish.

I perceive myself as an example to others when I continue to play hockey, attempt to ride my bike, and put in a 40 hour work week.  I perceive myself as a success when I make it through yet another surgery or tolerate another treatment.  I perceive myself as a failure when I need to pull the door shut at work because my emotions are getting the best of me.

Perceptions are almost certainly wrong.  I know people usually don't see me or the things that I am worried about and I am a classic example of the spotlight effect.  I know I need to be less concerned about perceptions and just move forward, being who I am but it is hard.

We all want others to think the best of us and sometimes the perceptions can get overwhelming.  I will try to continue to stand tall and do my best to ignore the negative perceptions I have of myself and that I imagine others have of me.  I am who I am.  I am strong when I can and I have others to help me when I am weak.  I need to learn to accept both as part of me and who I am.