‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.
Life doesn’t have to stop when you have a disability.
Hello there. My name is David, I am 25 and live in a small village in the Scottish Highlands, right on the shores of Loch Ness. I grew up here with my parents and little sister and in January last year, (very good timing considering what was about to hit us) I got married to my lovely wife, Bipana.
A year ago I started a blog called The HopScot, where I share my story, thoughts, information about my conditions and some (occasionally questionable) wisdom. I am also involved in the theatre (when there are no global pandemics at least), which requires me to, amongst other things, dance.
I was born with a congenital heart condition called Truncus Arteriosus, which means that the two arteries that carry blood away from my heart were fused together, mixing oxygen rich blood with oxygen depleted blood. Life-saving open heart surgery was performed at twelve weeks old and the arteries were separated. Unfortunately, this left me with a stretched and narrower pulmonary artery than is normal, a problem known as Pulmonary Stenosis which continues to demand attention to this day.
In 2011, just before my 16th birthday, I underwent further open-heart surgery to replace the worn-out parts that had been implanted when I was a baby. Not long after this, I contracted an infection called Endocarditis which, after many months of unsuccessful treatment with antibiotics, eventually required yet more surgical intervention to remove and replace the infected area.
During the surgery, there were some complications which led to me, a week later, arising from a medically induced coma to be told that my right leg had been amputated above the knee.
And that is the (very shortened) story of how I became an amputee with a heart condition.
Common Symptoms & How I Manage Them
Heart Condition (Truncus Arteriosus)
I am fortunate in that at the minute I don’t suffer any serious day to day symptoms from my heart condition. It was not much different when I was younger either. As a child, I couldn’t keep up with certain sports due to shortness of breath and there were occasional hospital visits but none of those things caused me any great issues. As far as I was concerned, I had a heart condition but didn’t really know more than that and to be honest, didn’t need to at that point. I ran around with all the other kids, completely unaware that I was supposed to be unwell.
There was a period in my mid-teens, between 15 and 17 where I suffered badly from fatigue, severe shortness of breath and dizziness but that came from being due up-keep surgery and a couple of really bad infections. For now, I am happy to say, I am free of such problems.
I mean, I don’t expect to be running back-to-back marathons any time soon but that isn’t solely down to my heart condition.
The biggest and most obvious side effect of having a missing leg is not being able to walk as much as I used to. It seems almost ridiculous to point it out, but because it is so obvious it is easy to overlook. I use a prosthesis which can, when used for extended periods, rub, bruise, pull and in numerous other ways damage my residual limb. It’s all about management with this. If I am going to be involved in an activity that will have me on my feet a lot, I need to make sure that I can have the week or two following free to relax and give my leg some time off.
Phantom pain is also a big thing. The sensation of still being able to feel your leg, even when it’s gone, is very difficult to try to explain. It is because the brain still sends out the normal signals that it would if the leg was still there. Most of the time this just results in feeling like the leg is still present but sometimes it can cause severe pain, like a bolt of lightning running through where the leg should be. It can also get worse the more you think about it, just writing this paragraph is causing me to feel like someone is sticking sharp pins into my absent foot.
So, let’s move swiftly on to the next topic…
The difference in the way I need to walk because of my prosthesis has, over time, introduced me to the wonderful world of back pain. It means that simple tasks, such as washing the dishes (I know, it sounds like a terrible excuse) can cause a lot of discomfort. There are certain exercises I can do to alleviate it but unfortunately, they are not a permanent cure. It doesn’t affect me massively at the moment and with some work, hopefully I can hold it off for a long time.
Learning to Adapt
Having been born with my heart condition there was never any need to arrange my life around it. It was how I had always been and if occasionally I was more unwell than usual, that was just par for the course. I have to take some medication every night before bed but again, I always have done so it’s difficult to quantify how having a heart condition changed my life from what it would have been.
However, that is not the case for my amputation. I was seventeen when I lost my leg and it changed the way I had to go about every aspect of my life. I had been very into outdoor activities, especially ones involving water such as kayaking, rafting, skiing (both water and snow). Not to mention the non-water related things like abseiling, rock climbing, mountain biking. All things that are made ever so slightly more difficult without the recommended number of limbs.
I worked with my Prosthetist to try to find a way I might be able to get back to at least some of those activities and with the right equipment, coupled with some work and stubbornness, I was able to recover some (not nearly all) of my previous hobbies.
Of course, it isn’t just on the rivers and mountains where being minus a leg affects my life. From things as simple as not putting clothes in the bottom draws because I couldn’t crouch down, to learning to drive in a whole different way (an automatic car using my left foot for throttle and brake), everything changed. Fortunately I have had my family there beside me the whole time to make sure that when I fall head first into the fridge, there is someone standing by to laugh and then pick me up.
It makes the whole process far easier having people around who are willing to not only help you up, but also crack a joke when you need it.
Has It Changed Me?
There have been times through my life, or at least since my teenage years, when I questioned just why I had been dealt this crappy hand and how different things might have been, had I been ‘normal’.
I have found myself feeling angry, agitated, upset and any number of other emotions but in the end, it never changes the fact that this is what I’ve got. Knowing and accepting that does nothing to stop these feelings but it probably helps to diminish their hold over me. There was a time after losing my leg when I became far less sympathetic to other people’s problems, constantly comparing them to my own.
The thing is, pain is subjective and just because I was upset that I’d lost my leg, it didn’t mean that someone else shouldn’t be sad because they’d broken their finger, or lost their job, or whatever thing they were legitimately upset about. It wasn’t too long, thankfully, until I got this into my head and since then I like to believe that I’ve become far more empathetic than I ever was before the amputation.
It also turned my plans for university on their head. I was hoping to study medicine but losing a year at school during my Highers, plus a second bout of infection hitting me just as I was preparing my application sent me down a different road. One that eventually led me to the theatre where I sang, acted, did my best at dancing and made many new friends. One of these friends ended up introducing me to the woman who would become my wife.
So, missing out on university was not quite the catastrophe it seemed to be at the time.
My Favourite Villain
Every time I see the character Loki appear on screen, or read about him in a comic book, it brings the biggest smile to my face. Especially the way he has been portrayed in the MCU movies, that confidence and smugness Tom Hiddleston brings is just *chef’s kiss*. I can’t really say I relate to the character in any way, at least I hope not, but I do think he is fantastic.
Thank you David for raising awareness!