54 Stairs and Counting
I forgot what a normal heartbeat feels like. I am so hypersensitive to my heart and heartbeat that I don’t know if other people even notice their own heartbeats. I don’t like to feel my heart beating anymore. It is a strange thing – my heart beats at least 55 beats per minute, all of the time, yet I can’t stand to feel it. I know that the alternative to it not beating is worse, but there is so much fear, anxiety, shame and sadness when it comes to my heart. I think I used to like the feeling of it beating hard, as I ran up hills or finished an intense workout. Now, I am afraid if I feel it too much, if it seems too high or if it skips a beat.
I have noticed my heart more on this trip than I have in a year. Nearly every apartment we have stayed in has 72, 78, 54 or 68 stairs to get into the front door – I know because I have found myself counting them each time I make the trek up. Every castle, church or beautiful view is at the top of a mountain or winding staircase. This trip has been amazing, but it has challenged me mentally and physically. I have had to stop to catch my breath walking from town to our place on the hillside in Varenna (Lake Como), I can’t carry Andy or bags up stairs or hills because it is too difficult and if I drink too much Prosecco or am too tired, my heart rate can become irregular.
One night, while we were in Lake Como, Andy, Brian, Nora and I went out to a great dinner. We decided to take a cab home instead of walking up the mountain so that I could have a little Prosecco. I had a couple of glasses but otherwise felt fine. We had had a long day of hiking, and we were all tired. I wasn’t thinking about it, but I grabbed Andy and started up the stairs. After only 15 stairs, I knew I had to have Brian carry him – I could feel that my heartrate was irregular. I slowed down and took my time, but by about 40 stairs up, I had to sit down with my head between my legs, and when the palpitations weren’t stopping, I lay on my back on the landing, with my feet on the stairs, for about 10 minutes. I was so afraid my defibrillator was going to go off – but it didn’t. Eventually, my heart calmed down, and I made it up to the apartment. I think Nora was a little surprised – she had never seen this before, and I was scared. I lay awake for about an hour, tried to meditate, tried to talk myself off the ledge and, finally, I tired myself out.
I didn’t think this trip would be so difficult. Last time I was in Europe, I ran to the top of the castles, carried all of my own bags (okay - most of them: Brian still helped a little), could drink as much wine as I wanted - red, white or bubbly - and I didn’t worry about anything. Don’t get me wrong: I am still able to do nearly everything I want to, but there is more moderation, things take twice as long and I need more rest.
Last night, we were having dinner on the square, and there was music. Andy loves music, so we stayed, and he danced like crazy. He was dancing so much that people began to cheer for him and clap. Brian was dancing with him for a little while, but it looked like so much fun I wanted to join in. I told Brian I would take over so he could have a little break.
It was a lot of fun! I was spinning Andy, jumping and dancing, but then I started to feel funny - like I needed to sit down. It had only been about five minutes, and I knew I was in trouble. I could feel my heart beating quickly, so quickly that it was difficult to catch my breath. My chest was moving fast, and I was feeling a little lightheaded – I looked down at my Garmin, and it was all over the place. I started to feel slightly confused, and everything around me was blurry and faded. I put my hand on Brian’s leg to try and tell him something was wrong and then – boom - I was shocked.
I yelled out and put my hands on my chest. I was still confused, but then my heart slowed down, and I realized what had happened. Anger came first. “I was just dancing with my son! How could this have happened?!” Then fear: “Am I okay; do I need to lie down? Yes, I need to lie down.” Embarrassment, frustration and sadness followed. I didn’t cry this time like I had the first time it happened in yoga. This was worse because I knew it was my heart, not a malfunction.
A lot happens when you get shocked. This time, I was sitting so I didn’t fall down or shoot across the room like I had in the past. But it hurts. It feels like someone kicks you in the chest and electrocutes you – oh wait, that is essentially what is happening. Then, your chest wall hurts everywhere, your body aches and exhaustion comes. Not the good kind - the kind of exhaustion where you can close your eyes anywhere and be asleep, the kind where you aren’t sure if you can walk the two blocks home and up the 68 stairs to the apartment, the kind where you don’t want to say a word to anyone because it is too much effort.
Once Brian got Andy to bed and I sat in the shower and cried for a while, I crawled into bed for the night - all I wanted was to sleep to forget what had happened and to pretend everything was okay. I knew I was fine physically, but emotionally, I was spent.
I spend a lot of time taking care of myself - it is like a full-time job now. I meditate daily (sometimes twice) and do yoga, and when I am home, I get massages, have energy work done (reiki etc.), drink decaffeinated coffee, eat a mostly vegan, gluten free, dairy free diet and have modified my work schedule to add more rest and relaxation to my life. This all makes me feel better. When things like this happen, I get very frustrated.
Over the last few weeks, I have been pushing myself: drinking caffeine and some alcohol, walking several hours a day, hiking, climbing stairs and not resting much. When I woke up, I found myself asking if it was all my fault for not adhering to my typical life. Maybe, maybe not. It could have been the combination of Prosecco, exhaustion, hormones and my diet OR it could have been the adrenaline rush from dancing.
In the end, it doesn’t matter what it was. I woke up and meditated about having gratitude for my body, and, surprisingly, afterward I felt better. Getting shocked sucks. Having ARVC sucks. Not being able to do things the way I used to sucks. But, I am here - on this amazing journey - and I get to wake up every morning to a new adventure with my son and husband. I have a lot to be grateful for, even if things aren’t the way they used to be or how I imagined they would be.