Our new staff writer, Lucy Beall Lott, writes about her childhood riddled with hospital trips and surgeries and the effect this had on her family. While she went through the physical pain, she grants that the emotional trauma her parents and siblings went through was comparable. As she grew more able to withstand pain, got used to anaesthetic and the painful comments from passersby, her family got evermore tired, evermore worried and evermore tetchy.
“Do you want to see her scars, you asshole?”
My brother said this to an old man walking past us in the grocery store parking lot — an old man who shook his head and scoffed with disapproval after seeing my brother and I park in a handicapped parking spot.
The man shook his head and kept walking, while my brother quietly seethed the rest of the shopping trip.
It's odd to think that those affected most by illness may not be the sufferer — of course it is, we’re the ones getting poked with needles and forcibly put to sleep with anesthetic, right? We’re the ones suffering, the only ones, isn’t that true?
Growing up with a terminal illness, I thought this for a long time. However, I’m an adult now, a healthy adult at university, and I know this is not necessarily true.
Of course, what I went through personally was never fun. But while I was asleep on the operating table, my family wasn’t. My older brother and sister, my mother, no. This is what was happening: my mother was sitting in the hospital’s designated parent waiting room, fingers gripping her cellphone as she watched my name on a screen move from “OR” to “POST OP”. My sister would be trying not to check her phone at work for any kind of update on my condition, and my brother would be texting my mother during a lecture wondering if I’d woken up yet, was I okay, what the hell was going on over there?
And I was asleep. And I was fine.
Like the incident in the grocery store parking lot and all the similar incidents preceding it, my family felt the weight of my condition just like I did. Maybe even more.
Whenever your body is put through any kind of extreme, you enter a survival-mode mindset that sees you through to the end. I can hardly remember the hours after severe injuries, or the minutes after waking up from anaesthetic, and that is so vital. It is my mind’s way of coping and processing trauma, adrenaline, and pain. And it works tremendously well. However, while my loved ones may be experiencing similar anxieties as me, they don’t have the benefit of this natural amnesia. They remember it all, in detail, what I’ve forgotten, and that is something I cannot fathom. Rarely do we think beyond the patient, but the whole picture is much larger.
This is something beginning to gain a little more recognition. Take, for example, the novel My Sister’s Keeper by Jodi Picoult. It is told primarily from the view of the main character’s healthy sister, not the patient herself, and interchanges points of view with the rest of her family to get a deep understanding of how their lives were changing. And while I don't think it's a totally accurate portrayal of having a terminal illness, The Fault in Our Stars by John Green also recognised the effect illness has on those who love the patient. We see the parents of these characters change careers, give up aspirations; we see the siblings sacrifice dreams for the good of their families. How parents have to miss siblings' important events, championship tennis matches, dance recitals, awards ceremonies, for surgeries; the resentment, and later guilt, they all feel because of this; jealousy for time stolen away with their parents, even though no one is at fault. But the books end, they have a final chapter, and we're all still moving along. My situation is not hopeless, I have grown up and will continue to do so. My brother, sister and mother can continue to enjoy my existence for a long time.
It’s important to think about, but it’s also quite difficult, especially if you do not personally know someone with a long-term illness.
Awareness of those who suffer due to health conditions is just as important as awareness of the condition itself. Everyone in that circle, not just the patient. Because, while I’m asleep, I want my family to know that there are other families like us out there. They are not the only ones waiting for their loved one to wake up.