What do I need…

Yesterday during my weekly therapy session, my therapist and I talked about my health. This is usually the topic of discussion and one of the main reasons I put myself in therapy. I finally opened up a little deeper yesterday. See, I have a tough time truly opening up and letting people in. I’ve got these large walls I’ve built when it comes to certain parts of me, and my health is one of them. I talk about it lightly with others because if you get too “real,” it frightens people.

I see the fear and sympathy in everyone’s eyes when I don’t talk about it lightly. When I start to talk about the heavy stuff, people rearrange their faces, so I can’t see their discomfort, but it’s all in the eyes. Your eyes reveal all the things your face isn’t saying. That’s one of the reasons I focus on someone’s eyes when I first meet them. I digress, I can see the sadness in their eyes. I can see my friends and family getting upset. When I see this, my tough exterior goes into effect, and I stop talking.

I know that those who care about me are allowed to feel a certain type of way. They’re allowed to be upset and think things are unfair. Lord knows I do. I’ve cried what I could only imagine the amount of tears that could make up a large body of water. But herein lies the problem. Majority of them are thinking about how it effects them if something happens, not how this truly effects me. The problem with this is a dynamic has been created that’s even more unfair. I always have to be the strong one. I can’t show too much emotion because it triggers fear in those that care. If I stay collected and calm about it, then it must be okay, right? Wrong! Instead, it makes it very lonely for me. Those first few moments I’m alone after these exchanges, I break down. I get in my car, get to the end of the street and sob into my steering wheel. Or I wait until I’m home, then I sit in the shower holding myself while sobbing.

I’m starting to reach the end of my rope with this dynamic. I’m finally beginning to be brutally honest. When asked if I’m okay, I’m finally admitting the answer is no. I’m talking about my health more matter of fact and not sugar coating it. Maybe this is my way of coping or maybe it’s because I’m tired of feeling so alone in this. What I’ve learned over the last 5 years, is that people don’t want to know the truth. They want a version of the truth. For years I’ve been giving everyone a version of the truth and hiding this huge part of myself.

I’ve written about how I resent my health and heart about how I never wanted it to define me and how I’ve fought so hard to be someone outside of my heart conditions. Yet they consume me. If you’re ever with me and I’m looking off into space with my mind racing, you can bet that 98% of the time, I’m thinking about my heart and all it entails. It creates fear and anxiety that is hard to describe. It eats at me from the inside out. I don’t want it to define me or be my whole life, but it is what makes me, me.

Lately, I’ve been wholly consumed, overwhelmed, and distracted by my health. Every skipped or extra beat creates panic. Anytime something feels off, my mind immediately goes to the worst-case scenario. I’ve been trying not to get my hopes up because I’m yet again in a situation where everything in my life is barreling forward except my health. So, for the last few weeks, my therapy sessions have been all about my health. Yesterday my therapist asked me what I needed from others, and I honestly couldn’t answer the question. I don’t know what I need because, on a deep level, I always deal with this on my own. I don’t let anyone help me with the deepest darkest parts of it. I get told, “you’re so strong,” but honestly, what other choice do I have?

What do I need from others? I could use a conversation with someone where I can’t see the discomfort in their eyes. I could use an emotionless discussion—one where I don’t have to sugar coat it. I want not to have to worry about how this is affecting the other person for just one conversation. I wish not to feel a level of loneliness that consumes me even in a crowd of people. I want for someone actually to understand what it’s like for me. I wish for my therapy sessions to be about the common problems of a newly 30-year-old, like dating and developing relationships, making good career choices, or nonsensical problems.

Sick and tired of being sick and tired…

I would like to know what it is like to not be complicated. To not be so completely complex that you feel like you have no control over your own body. To be genuinely healthy and to not live in fear. I was asked the other day what my main concern was with all of the electrical issues going on with my heart. My answer was simple. I fear that I’m going to go into V-fib and be shocked and hurt myself or someone else. I’m afraid it’ll happen when I’m driving and I’ll cause an accident. I’m afraid it’ll happen when I’m awake and alone and I’ll fall hitting my head or hurt myself worse. Most of all I am afraid that there is no solution to my particular perplexing issue and that it could be my demise.

My whole life I’ve been rather challenging. The punishment was always worth the crime as a child. I always pushed my limits with my parents. I tend to tell the truth when people aren’t ready or used to it. I’ve been an ever-evolving person. I’ve had many stages in my life and I’ve only recently really come to know who I am as a person. My emotions have always been complex and so has my personality. I now appreciate my peculiarities and obscurity. Besides my challenging and evolving personality, my health has been a whole other beast.

While I have made it well known my heart has always been far from normal. It’s been something I’ve fought against and resented my whole life. I didn’t want it to define me and that’s exactly what it has done. It’s what makes me who I am. It’s consuming. While all of my friends and family would describe me as strong because of it I feel completely at its mercy. It started out abnormal, which to me is kind of ironic because I feel like I’m a little anomalous as a person, but it’s grown to be quite literally one of a kind. My particular malfunction in the heart is not a structural problem anymore. I’d kill to go back to my valve being the only serious issue. An easy answer and an easy fix. Structural issues of the heart are simpler, but no, I have to continue to be challenging.

A lot of you are not in the medical field and don’t know medical terminology and don’t exactly understand how it all works. Your heart has an electrical system that makes it beat correctly. That lub dub you’re supposed to hear occurs because of the electricity flowing through your heart. My heart, however, likes to have premature ventricular contractions(also known as skipped beats) at an abnormal rate. It also likes to go into ventricular tachycardia, which means my heart beats WAY too fast. I just learned the other day that one area of my heart was beating at 300 beats per minute during one of these spells. When this happens my heart feels like it’s beating out of my chest. Also when this happens my heart gets stuck in this rhythm of beating too fast to actually pump. When this occurs I am not getting oxygenated blood throughout my body because my heart can’t efficiently pump it out. When it’s stuck like this the muscle then begins to spasm and not beat all. That is known as ventricular arrhythmia and ventricular fibrillation. My pacemaker is designed to try to pace my heart back into a normal rhythm and when it cannot my defibrillator kicks in. If I didn’t have my pacemaker/defibrillator I wouldn’t be here today. I have had at least one spell of ventricular tachycardia and arrhythmia every month this year. I’ve had more but there hasn’t been one month without. I could have died at least once every month this year without my ICD(implantable cardiac device).

Finding this out and being told just how severe and serious of a case I am has been absolutely overwhelming. Honestly, there isn’t a word to describe the emotion I am feeling. I knew it was serious and I know that I downplay it to everyone else, but I can’t anymore. I can’t pretend I am okay and that I am normal anymore. I can’t mask my fear and uncertainty anymore. It is so exhausting physically because of the arrhythmia and the high number of PVCs I have regularly. I am extremely symptomatic with it all and it physically drains me. Also, being so emotionally concealed and strong for everyone else is beginning to take a toll. Completely relinquishing myself to the fact that I am not healthy and will never be medically “normal” is proving to be difficult and incredibly depressing. I’ve got a lot of uncertainty ahead and it’s not going to be easy. From starting a medicine with a black box warning label and severe side effects to accepting that there may never be a solution. It’s going to be a tough journey with a lot of ups and downs.

To everyone that has reached out and to everyone that has respected the fact that I am not ready to talk, I thank you. I have a lot I need to process still. Emotions are all over the place right now. But I appreciate every one of you that is in my corner, thoughts, prayers, positive vibes and listening ears, you all mean a lot. I have some of the BEST friends and even better family.