Surgeries, infusions, countless ICU visits, medications, sleepless nights and no cure. Since the diagnosis I wanted to be there for you and you of all people would say that I have a heart to keep on giving even when the going gets tough. I care about you tirelessly; every aspect of your day in fact. However, I was not born into this world to wallow all my life in your illness. Sometimes I feel as if I walk around with a "Hello my name is Ankylosing Spondylitis" name tag because people ask me more often how you are doing than how I am.
Growing up in the shadow of your illness made me bitter at times. Every time I was asked about your disease I had to unclench my fists and work up a smile to inform people on the latest of your doctor appointments and surgeries. All I really wanted to do? I wanted to tell them how I was doing and act like the conversation could be about me for once. I also wanted to tell them if they cared so much about you to ask you. Not because I don't care but because then you would have seen the reality of how concerned people are for your wellbeing. You are very loved, you always have been.
It is hard to imagine life without you in this pain because I was so young when the disease kicked in. I vaguely remember your visits to school where you read books I picked off my shelf to the class, exciting and refreshing bikes rides down the lakefront, strolls through downtown to your old office where the renovations only looked like a playground to me. Sometimes I wish I could have been like other people my age with endless stories about how their dad took them on road trips or other amazing adventures because my memories remain in the past, almost a decade back. And as the years pass and most are making those memories with their parents, I was at your bedside helping you change your cooling pads after multiple surgeries, making sure you took your medication and cooking your meals. Do I wish things could have been better? For your sake, yes. However I learned a lot about putting others needs before my own at a very young age which is an extremely enriching feeling.
I am not your illness but your illness has molded me to who I am today. Reflecting on my personality, I can say that your illness has had a major impact on the kind of person I have become. I discovered the keys to living with someone who has a life threatening illness: self control, selflessness, independence and wisdom. I trained myself to have a pitch ready to give people of the low down on your health and to not let it bother me. I made every effort I could to be by your side through every recovery, any moment of the day possible. I learned many things you weren’t able to guide me through from sports I grew to love to heartbreaks that wore me out. I am proud to say that unlike most who turn to someone for an answer when things get difficult, I am able to rely on myself for anything I set my mind to. I happily gained knowledge about this disease and experience living with someone with a disability. Your heart and mind need to be clean of the stress in your life and full of patience, love and respect.
I am not your illness, I am your daughter and strive to be your biggest supporter.
