An Unhealthy Fixation on Cardiovascular Causation

Written by: Amiel Buning

*Tu tump* *Tu tump* *Tu tump*

Listen closer and tell me what you hear

Hand on your chest tell me what you feel

If I gave you a hint, would it be crystal clear?

The sound of your heart beating signifies you’re alive

But what if it became a fixation in your mind?

Plotting against you, your long-awaited demise

You see, with LDS, I don’t know if I trust mine…

To pump blood to my heart

A tiny aortic root

Growing twice at fast

Body systems become acute

Mental health draining

Because this fixation of mine

Will stay alongside me

Until the end of time.

*Tu tump* *Tu tump* *Tu tump*

I was inspired to create this poem due to the level of negative thoughts that occur daily in my mind. In particular, after being diagnosed with LDS, I have developed this unhealthy fixation of checking my heartbeat or pulse anytime my body feels pain or discomfort. And while I don’t expect to win any writing awards or be greeted by a room full of snaps at a poetry slam; I hope this poem resonates with patients who share the same psychological developments that I do, concerned that their body is about to fail, have an aneurysm and flatline on the floor.

At first glance, this blog entry appears to be gloomy and dark, focusing entirely on the concept of “death”. I won’t sugar-coat it. Part of it is. However, if you look beyond all the negativity, it’s actually my attempt to remain positive and deal with the additional barrier that (LDS) patients have to face. This being: “How do I remain positive after a life-changing diagnosis?”; “How do I stop thinking about my body in a negative way?”; “How can I make these feelings about my heart go away?” If you’re anything like me, questions like this wander in your mind, take time out of your day, and remain inside there for long periods of time. And so, the question then becomes: How do we get these thoughts inside our head to disappear?

After attending the 3rd HAD (Heritable Aortic Disorders) Symposium that featured discussions about aortic dissections, Marfan Syndrome, and Loeys-Dietz, I learned the answer to this question. I’m here to report that the answer (given by medical professionals) is not ground-breaking, it’s not revolutionary. Quite the opposite, it is quite straightforward and simple. In fact, when I was surrounded by LDS patients in the Maritime Region all in one room, it felt as if we took one collective sigh followed by one collective laugh after being told the secret to deal with a life changing illness. The answers to the questions I posed above is…”You can’t”.

As highlighted by psychologist, Dr. Sulaye Thakrar, “you can’t stop the waves, but you can learn to surf”. Listening intently to Thakrar’s train of thought (pun intended), it’s impossible to stop having these thoughts correlated to our diagnosis. Instead, what we can do is develop ways to validate our feelings (both positive and negative) without having them take over our life. Essentially, once we understand that we can’t escape our thoughts, we should spend more time and energy on finding ways to provide a safe space to express them. Whether that’s taking a 5-minute walk in nature, spending time with our pets, or putting effort into learning a new hobby, these are healthy alternatives to dealing and living with such intrusive thoughts.

For me personally, I use writing as a form of escape. If you haven’t guessed by now, I have a love for storytelling, analyzing my thoughts, and putting it out for all of you to read. There’s something very therapeutic about writing my unfiltered thoughts on a piece of paper or typing it out on a computer screen. Unedited. Raw. Vulnerable. It allows me to process my emotions about my diagnosis, the physical and psychological change it has caused, the resilience it brings out of me (ex. fight or flight, fighting spirit), and the desire to reach out to others who may be dealing with the same thoughts, but feel that they are alone. God knows I definitely felt alone before attending the HAD Symposium in Halifax, Nova Scotia. To be relatively young (compared to other patients) and have to make such adult decisions, I was truly consumed by these overwhelming thoughts; and for a long time, I thought I was the only one experiencing them, too embarrassed or ashamed to tell anyone. But I was wrong. There are several other patients who think like I do, who need the same help and guidance to build healthier mindsets, and who have the need to develop a strong mental fortitude if they will live side-by-side with their diagnosis. One thing is for sure, we have to start looking within (our mind) for change to be seen and felt.

For more information on managing intrusive thoughts after receiving a life changing diagnosis, see the LDSFC website as well as these recommended sources.

~ Dealing with Intrusive Thoughts? ~

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