When I was around eight or nine, I learnt that some children are abused or neglected by their parents. I felt grateful that I was having a good childhood surrounded by people who loved me, and I counted myself lucky. Now, although it's not on the level of being abused of neglected, these thoughts all happened from a hospital bed inside one of the UK's leading heart and lung hospitals.
And the truth is, this is what quite significant parts of my childhood looked like:
As curious, intelligent and perceptive as children can be, it takes maturity and being away from your family to appreciate the different lives that people lead and grow up with.
When I meet new people now, and any strange health ailments are brought up, there's always an awkward moment for me as I decide whether or not to say "oh yeah, I was born with several heart conditions, nearly died a few times. It can't be cured, and I'm waiting for more surgery. Just a fun fact for you there." As can be expected, it either leads to a lot of questions, awkward silences, or (a favourite of mine) if we're out, the question of whether I should be drinking whatever I am drinking at the time. Which, yes, as someone living with these problems, I know what I can and can't do.
For the most part, I'm fine with it. I accept the body I was born with and quite frankly it's given me some amazing experiences and perks. For all the rough times I went through when I was younger, I am now healthy enough to live independently, make my own life decisions and only vaguely work around my health with some things. Of course, it's not always easy sailing, and considering it's heart month, it seemed like the right time to shed some light on what it can be like to grow up and reach adulthood with fairly serious heart defects.
This above is me as a baby. Five days old to be exact. I always knew that I'd had my first open heart surgery so young, but it wasn't until my niece was born, and I held her at six days old, a fragile, needy baby who was still grasping the fact she needed to breathe regularly in order to survive, that I realised how tiny and helpless I had been. That when the doctors said my heart had been the size of a walnut while they preformed life saving surgery, they really weren't kidding.
At six months old my second lot of (emergency) heart surgery occurred, as a blood clot had effected the performance of the first surgery. By this point both sides of my ribcage had been broken for access, and arteries removed from my arms to put into my heart. It always hurt being picked up under the arms when I was younger, and it wasn't until I learnt to pace myself more each day that I began building up the strength in my right arm enough to pursue writing as a career. I still don't have a pulse in my left wrist, which is always a fun party trick. My diaphragm doesn't expand probably though, so I get a lot of muscle problems in my back whenever I do any kind of strenuous carrying.
I developed most things quite late. I didn't walk until I was three, and my then weak arms/healing ribcage meant that I never used crawling as a method of transport. In my reception year of school I had an entire term off while having surgery, recovering, and then being rushed in again with fluid on my chest. This is the day before I went to theatre for that surgery:
I remember one of my favourite things about being in hospital was using the bars on the bed as a prison setting for my toys. As much as I disliked needles, nasty tasting medicines and doctors with rough hands, hospital was a second home for me and I couldn't understand for a long time why some people couldn't even stand walking into them. In fact, the surgery I was about to have in this instance wasn't a concern to me. At four and a half, I was more determined to wake up in the recovery room like a big girl – albeit a little naive that it was the anaesthetists who decided when I would wake up (and in this case it was actually two weeks later because of a lot of complications, 0-1 to Sophie).
Friends were harder to come by. My classmates didn't understand my problems and were jealous I didn't get in trouble for all the time I was off school, and I wasn't well enough to join outside groups very often. A lot of the people I considered friends were ones I met through hospital. Being in together wasn't an unusual occurrence, and play dates to the hospital classroom or playroom were encouraged. Of course, there were rough times. One of my friends died when I was six, and others haven't overcome difficulties as well as I have, but there's a strange sense of bonding that will never disappear for me. In the few instances that I have met people in day to day situations with ACHD, there is instantly so much to talk about.
Nurses were also my friends, teaching me how to use different kinds of equipment and only vaguely assisting me when it was time to take my blood pressure, oxygen levels and temperature.
I seemed to be remembered wherever I went, and up until a couple of years ago I could still go onto the children's ward and catch up with several members of staff, who are all somewhere in family photo albums giving me life enhancing care.
As I grew though, I wasn't sure what to do with all these experiences. I was getting healthier, and the more distance that grew between everyday life and staying in hospital, the more extreme I realised the situation had been. Morbid questions I used to casually ask my mum started getting serious answers. Yes, I was given only twenty-four hours to live before my surgery at five days old. Yes, the complications following my surgery at four and a half meant I only had a 50/50 chance of survival in the following days. Yes, the doctors told my mum I may not reach my teenage years.
I insisted for a while that I'd had enough. That I didn't ever want any more surgery despite what this inevitably meant at some point in the future. I also saw a psychologist for several years, and despite my constant smile that everyone commented on, I was diagnosed with depression twice by the time I reached sixteen.
After I got through my GCSE's, I went to college and began exploring who I really was. There were still a lot of things I thought were forbidden to me, from getting pregnant to having my ears pierced; but I suddenly had a lot of friends who didn't know any of my past, which was both empowering and lonely. I could be whoever I wanted to be, but was unsure of the reaction I'd get if I was myself. So I offered my body and scars up as a subject for an 'Unusual Forms' photography project. Media makeup students worked on my face and scars for three hours, making me look haunted and wounded. When I was viewing them afterwards, they seemed to show me as how I sometimes felt: broken, scarred and unsure how to proceed into an adulthood I was never guaranteed to reach.
In other situations though, friends and family made sure I got experiences that I had to give up as a child (including dressing up like a cheerleader), and the more I poked information about my past into conversations, the more I realised that my peers had reached an age where they not only didn't run away, they actually seemed intrigued. It turned out that I had in fact had a childhood different and more traumatic than most.
Life settled into something reflective of normal with a background hum of a heart condition. The only times I was forced to think about my health was in the morning taking my medication, and once a year at cardiac appointments. Even at these I normally came posed with non medical questions, like whether I could get tattoos, or study in America for a year, or change my medication from two pills to a combined one to make my prescriptions cheaper.
And all those things, I did.
Some time after going to uni, I realised it wasn't enough for me to casually mention my heart condition, that the jewellery sparkling from my earlobes didn't signify to anyone the things that I was proud of overcoming. I didn't want to deal with the stares or comments my scars still occasionally garnered. I wanted people to know that yes, I know I have giant scars on my back and chest. And yes, you can ask questions about them. But mostly, I really wanted a tattoo. So I got nine feathers around the scars from my first two surgeries. Coincidentally, that's the number of heart defects I was born with.
A lot of people say they don't mind their scars because they wouldn't be alive without them. I don't mind mine because they help tell my story. They mean that I don't become uncomfortable or emotional when I see ill children, because I know that inside they have every potential to be as happy as their peers. And they also mean that I can pretty much out boast anyone's childhood illness stories in a couple of sentences.
I try to remain pretty humble about my experiences. I know I survived a lot, but it still feels weird to call myself a fighter, or say that I was exceptionally brave as a child, because I didn't know anything else. I didn't know how to be scared of needles or that I was having a battle with my own body, because I was thrown into those situations without a choice. There is no running away from health problems that are inside you. All you can do is smile and try to find the good in things everywhere you go.
No comments:
Post a Comment