By Lorelei Hill
22 Jan

Pretending To Be A Normal Person

Thursday, January 22, 2015

Last Saturday, as I sipped my morning coffee I looked at my family and smiled. In that moment everything felt “normal.” My favorite mug reads, “Pretending to be a normal person day-after-day is exhausting.” I read the caption and laughed. I purchased this mug as a gift, then found I could not give it away. This message spoke to me.

As a girl growing up with CHD, I tried my best to keep up with my friends. When my condition got in the way, I had no other choice but to step back from my normal life and let others care for me again. As I grew, I was fortunate enough to feel good most of the time. The better I felt, the less inclined I was to exchange my everyday life for one as a patient. I just wanted to fit into the world without having to be concerned about my next hospital test or clinic visit.

When health issues did arise, I’d quietly withdraw from the life I knew until I was “well” again. Once the ordeal was over, I’d return to my “normal” life all over again. For many years this lifestyle worked very well for me for a variety of reasons.

First and foremost, it enabled me to see myself as strong and resourceful rather than sickly and weak. This outlook, I have come to understand, has helped me my entire life to move beyond the circumstances of my condition and move forward in life. Seeing myself in this light, I became convinced that despite my birth defect, I was capable of anything I put my mind to and I did a lot of things that many people believed were simply not possible for a woman with my condition.

Throughout my heart transplant, I continued to see myself as strong and capable. Writing and speaking about my condition strengthened my resolve to be the best “normal person” I could be, and so I did it regularly. That is until last March, when the unthinkable happened. A series of what I believed to be drug-related headaches turned into debilitating migraines. Though I am told I was conscious, my light went out.

Literally, for the first time in my life, my life was out of my hands. The conditions of my survival fell on the shoulders of my husband, family members, and medical team. An incredible neurosurgeon stepped in to perform a surgery I could never have foreseen. The odds of survival were not good, and I had no idea it was even happening.

Afterwards, my family sat vigil by my bed. In the moments between survival and surrender, my husband called my closest friend back from Europe. “Just let her hear your voice,” he said, when she arrived in Toronto.

Each morning as I sip my coffee, I find myself wondering what transpired in the minutes, hours, and days when the lights went out. I am told about the surgery, and gratefully have no recollection of the pain. I hear stories of hospital visitors, and smile as if I remember. No planning, worrying, or fear of outcome came into play, and yet, here I sit.

Finally, my family has a routine of sorts. During the winter weekdays, I wake the kids, feed the pets, get breakfast on the table, pack school lunches, and check that the kids are ready for school while Mike gets himself ready for work, then heads out to shovel and snowblow. On the weekends, Mike makes a wonderful big breakfast while I get the kids and dog out the door for a much-needed walk. We’ve finally gotten back to “normal,” or so it would appear. These days, pretending to be a normal person day-after-day truly is exhausting. But what really is normal for a CHD person? For my family, it’s moving forward despite what life sends our way.

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