Finding My Path From Chronic Illness Patient to Caregiver

From the first day I entered preschool, I was often met with the question, “So, what do you want to be when you grow up?” As my understanding of the question grew, my answers matured, and it became more and more frightening to answer the question I had been asked. I’m sure I first started off as a princess, who then matured to an artist, then a dancer, then a teacher, then a psychiatrist — but by the time high school came rolling around, I was sure of what I wanted to be, and I would never have guessed it for myself.

I began getting sick around the age of 11. It was the time the question of what I wanted to be when I grew up started to become a more serious conversation, as I was only a few years away from high school — and after high school comes college and after college comes… life. Though instead of exploring all of my opportunities and interests, my life took a drastic turn. I went from dreaming of making dance a career to trying to balance dance and a wide range of confusing, painful and undiagnosed symptoms.

The symptoms came quicker than the diagnoses, and the diagnoses often came without a treatment. Doctors were confused, but they tried — a scan here, a test there, eventually a surgery, and then came the long list of syndromes and disorders and diseases my body was riddled with. Before I got sick, and even through the first year, I was the child you heard screaming down the hallway because they came to take blood, start an IV, or give an injection. I was that kid the nurses closed all the doors for, but eventually I grew to love those people. As the years passed and I struggled to balance being a competitive dancer and a full-time chronically ill, undiagnosed young lady, my values, my priorities and my career choices changed. I went from wanting to be a dancer to wanting to be a teacher at the Hospital for Sick Children (SickKids) in Toronto, to then wanting to be a child life specialist at SickKids, to finally deciding I wanted to be a pediatric oncology nurse at SickKids. I grew up in this hospital, and it is lovingly dubbed “SickKids” — not to disempower or promote pity, but quite honestly just because it’s a lot easier to say! Go figure — the kid who wouldn’t be caught near anyone holding a needle, dreaming to be the one on the other side. It may sound a bit silly, but when you’re a patient in that hospital, or in any children’s hospital for that matter, you learn it can be a different kind of bond.

I will never forget all of the days and nights I had with my nurses who helped everything make sense. The way I watched them care for fellow patients, the way fellow patients would come up to the ward specifically seeking them and the smiles that would follow. I never forgot the feeling of seeing my favorite nurse walk in at the beginning of shift change, knowing I had 12 hours with someone I trusted as much as my own mother. My nurses were and are my superheroes. They made long painful days durable, they made cravings for banana popsicles a reality (even if they had to take them from other units), they made scary procedures less overwhelming, and they filled sleepless, anxious nights with comforting words, songs and back rubs. To me, there was nothing my nurse couldn’t fix, couldn’t do, or couldn’t make happen — and I could not wait for the day I could give to a patient what my nurses had given me.

That was 10 years ago, and a lot has changed in those 10 years. I’ve gained a lot more understanding about my illnesses. Unfortunately, that understanding came with a lot more diagnoses and surgeries and pain. However, one thing remained the same — I wanted to be a nurse. I still want to be a nurse. I just turned 22 at the beginning of October, and to say it bluntly, 21 was not a kind year to me. I endured more pain and struggle than I would wish upon my worst enemy. At 22, I should have been beginning my first year of work as a nurse, but instead I have three failed attempts behind me and a body that is as unstable as ever. For the first time in this journey, I had doctors, peers and even someone I looked up to turn to me and say, “Honey, you can’t be a nurse. You need a nurse.” I’ve been told I should consider my career path, that there was no possible way I could last 12 hours on my feet if I could barely stay awake for six hours as it is. I don’t know if there is a way to adequately describe how it feels to hear someone doubt you and your dreams, but I’m sure it is amongst the 10 most heartbreaking scenarios in the book of life.

Over the last few months, I have been trying to come to face and accept the fact that maybe my dream is just that, a dream. Maybe it is too farfetched and unrealistic. Maybe I can’t be what I need. So I ran lists through my head. I did those career path predicting quizzes online, and then something happened that finally made me understand it all, and it helped me understand where I needed to be.

Just this past weekend, my youngest sister had to have her appendix taken out. My heart stopped as it always does when someone I love is enduring any pain I feel or have felt. I wanted to rush over to the hospital to be there with her for her 2 a.m. surgery, but my mom convinced me to stay home as I had an interview early the next morning to raise awareness for one of the illnesses I fight. I spent that night crying and praying for the text message that told me she came out of surgery and all went well. Thankfully, it did. My tiny, precious little pain in the butt of a sister came through with flying colors, but definitely not without a little soreness. I went to visit her the next day, and she asked me a million questions about her incisions, the bubbles in her IV line, the tape she was covered in, the fluid running through her IV. She asked me every question I once asked my nurse after my appendectomy. She asked me to help her re-tape her IV as it was taped in an uncomfortable spot, but she was mortified at the pain of the tape coming off of the hair on her skin, so I went on a search for some adhesive remover and spend the next half hour talking her through it and removing the tape that was bugging her. When she came home, I spent the next few days keeping on top of her pain medication, making sure she was comfortable, making sure she rested and she drank. She became my little patient, and even though I wish she wasn’t, I was so happy I could finally be her big sister. As the eldest in my family and the only one with chronic illness, my little sisters often end up caring for me. They know the names of my diseases, my symptoms, they know warning signs of anaphylaxis, and which arm to be careful not to hit to avoid triggering my complex regional pain syndrome (CRPS). To finally be able to be her big sister brought me to tears, and it reaffirmed that I always want to be her big sister.

Taking care of my sweet little sister confirmed for me I am on the path I need to be. Whether it takes me four years or six, nursing is where I am meant to be. Caring for another little one through their pain and fear is where I need to be. Rubbing my patient’s back and comforting them through tears is where I need to be. Delivering medications that ease the yuckiness is where I need to be. Being a nurse is what I need to be, and there is no medical professional or being on this earth that could convince me otherwise.

I live and advocate with the mindset that in this day and age there is no such thing as limitations, there should be no such thing as limitations. So long as I can love and care for my patients to the extent of my desire to do so, I know I am where I’m meant to be. My disorders are just that, they are mine, and I am only limited by the boundaries I allow myself to be limited by. I believe there is no disability or disease that can affect our ability to love one another. I spent the better part of this last year questioning my place on this earth and my purpose, as I had convinced myself my purpose was to be a nurse, and I considered myself a failure because I wasn’t there when all of my peers were. However, it was during this time of doubt I realized just how blessed I am. How blessed I am to be cared for by nurses who have fought just as hard as I will to care for their patients, blessed that time is an endless concept and school will always be there, blessed that science will continue to evolve, blessed that there will always be something new to learn, and blessed that there will always be a heart for me to love and a body for me to heal.

As patients, we can spend so much time contemplating what our role is while everyone around us works so hard to pick up where we leave off, and we can tend to forget how important we are in inspiring our caregivers to do better and to be better. We are providing hope and knowledge to the medical field about the rare conditions we face, and the potential that exists to live with them. Most importantly, we’re keeping a special kind of love and desire circulating in this world — a reckless, fearless, completely raw and genuine love that I believe can heal any ailment. So yes, I will admit sometimes I grow upset and frustrated that I’m not in the workforce yet and am instead on the other side of the spectrum, but from this day forward I will make sure to live by the words of Vincent van Gogh: “Your profession is not what brings home your weekly paycheck. Your profession is what you’re put here on earth to do, with such passion and such intensity that it becomes spiritual in calling.” With that, I know my doubts will be drowned out by my dreams, and my dreams will take flight by the passion I possess.

Follow this journey on #SimplySabrina.

Image via Contributor.

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