Sami Jankins explains why a diagnosis doesn’t have to alter your outlook on life and what you can seek to achieve.
Sometimes I’m thankful that I don’t remember a time when I was well. I have nothing to compare what my life could have been, might have been without a chronic illness. What I do remember is my Dad rocking me back and forth when I had a severe double ear infection as a three year old. I remember him going to the front desk and demanding faster care as I tried to stifle the screams of pain – we were provided a cold cloth. My fever at that point was 105 degrees. This wouldn’t be the first or last time I’d have fevers that high. I remember the baffling hallucinations that accompanied my various childhood bouts of pneumonia or mononucleosis and the ice baths I would take to help bring the fevers down. I remember my school sending me home because they didn’t understand I could still be a focused student with an asthma cough. I only know days and weeks having spent in hospital beds, but I also learned how to keep myself occupied with creating box forts.
When I was fifteen years old I had to learn to walk again following an episode of Guillain-Barré, a temporary neurological condition that paralyzes – I can now walk again without any sign of previous problems. I faced it head on with a sense of humor, decorating my walker, and attaching a “slow moving person” sign on the side. I was in a musical at the time, and although the hospital doctors didn’t believe it was possible, with special staging I abided by “the show must go on” thought process. In college I developed life-threatening blood clots and still made the first day of semester. When I had another hospitalization which required a longer absence from school, I taught myself Latin, and am still very proud of that B to this day.
There have been many times I’ve encountered the “you can’t”, especially when it comes to my selected field of study in the arts. Although I’ve now found a wonderful community, previously it’s not always been kind. There has been push back because there is still a belief that in order to accomplish and achieve in life, you must be healthy. These opinions have never stopped me because I’m stubborn. I have to be. To deal with taking handfuls of pills with all of their side effects, in order to cope with health conditions whose labels frequently get changed or thrown into the unknown category, in order to continue to be my best possible advocate – I remain stubborn. I keep on moving forward and this is how I know I haven’t been defined by having chronic illness.
I’ve been given the rare opportunity to see the world in a different light. Don’t get me wrong, I’m not the walking clichéd “sick person” that you see on TV. I’m not here to show you how much more life has to offer that you’re just missing out on. Some people need years to determine their passions and mine were handed to me, accompanying my list of illnesses. I know that tomorrow might not be one of my good days, so I better make my good day into an extraordinary one.
Being chronically ill is a full-time job, and if any of your family members or friends makes it look easy, they deserve a round of applause and some serious recognition because they are trying to preserve you from their experiences. The reality of the full picture can be uncomfortable and challenging for non-affected to deal with. I have seen people leave my life because they cannot handle illness. I have witnessed more compassion from others that I still can’t fully express enough gratitude for. When your life goes back and forth between your worst and your best, it allows you to see others for who they really are.
Are there days I wish that I didn’t have health problems? Pretty much any day I look at my schedule of weekly doctor appointments and instantly become overwhelmed. I have concerns of long term relationship potential. I date plenty, but I realize my life is very much not normal to someone who hasn’t been around the world of illness. I have to place a tremendous amount of good faith in others. Being defined by something is allowing yourself to be held back by it, and I don’t plan to let that happen. I’ve been interviewed on TV programs to be hospitalized later that day. I’ve gotten out of the hospital to be do a radio interview for whatever program I’m working on. I’ve taken the power back and have utilized my health conditions to become a more effective advocate for others with similar issues, and hopefully by being a role model in showing that a malfunctioning body part doesn’t have to define you. I don’t fight against my various chronic health issues – something I did often in my younger years. Instead, I work with it. I allow it to inspire the work I do for graduate school, which has a strong focus on how film and TV deal with illness narratives. I try to help others find ways to better express themselves. I tell my story to try to normalize the experiences I go though. I get involved with projects that I feel can be beneficial to the chronic illness population as a whole. I have never allowed my illness to rob me of my voice and my ability to speak out, and I never intend to.
We don’t get to decide in life what deck of cards we are handed. We can decide what we choose to do with our cards. Chronic illness will invariably always be a part of my life; it’s something I’ve come to accept. Acceptance feels better than fighting against it. However, I am so much more than a patient ID number. I’m so much more than my list of health issues. I’ve chosen to work with my health issues instead of against it so I can show others that their health issues don’t have to define them either. It may be that you need to find a different pace where you can accomplish what you set out to do, but the only thing taken away from you in life is what you allow life to take away. If anything, I’ve used my health issues as a catalyst. I’ve proven time and again that I can reach my goals under a variety of circumstances. I’d like to see one person who has achieved a goal in life where they haven’t faced some kind of set-backs or moment of failure. We all make the final decision on what we choose to have as our defining characteristic. Chronic illness doesn’t define me. I’m so much more multifaceted than that.