If you're a relative or close friend and actually want to hear the answer whether it be a crying meltdown, a realistic and depressing status update, or anything in between- then by all means, ask! I'd have cracked by now if I didn't have my husband and sister to vent to. If you're not ready for the answer though, it's probably better not to ask the question. Skip that particular pleasantry and replace it with another one! My personal favorite is something like "oh my God you look AMAZING!" or "hey, would you like $20 bucks?". Basically anything that doesn't remind me that how I'm "doing" is something that provokes pity in your voice when you ask me about it. I've stopped lying ("oh, I'm fine. great! how are you?") and instead go with a more realistic "hanging in there" as part of my commitment to not trivialize or deny my condition like I have every problem in my past. That answer might make people uncomfortable but it's the truth. I'm doing what I have to do. I'm not suffering, but I'm not thriving either.
So what does it feel like? A lot of the symptoms I've had for years in milder form, but never attributed them to a serious issue. Dizziness upon standing, tingles and numbness in feet/hands, chest palpitations... I've felt these little flutters in my chest that feel like digestion for as long as I can remember but I wouldn't in my wildest dreams have attributed that to anything more than maybe I drank too much seltzer or something?? That's what I always thought! Extreme fatigue is the most common symptom, or so they say. My doctor said a lot of people come in thinking they have chronic fatigue syndrome and get diagnosed with an arrhythmia. Sure, I feel tired a bunch but I have the will power of a warrior and would do exactly the same amount of "stuff" in a day whether my energy level was at 10 or at 2. That's just the kind of maniac I am. It's the "Steve Smear" in me. My relatives are scared to see me post-surgery when I actually have sufficient blood being pumped to my organs and body parts. I'll probably be a VERY SCARILY thriving, focused, energetic person and I can't wait.
The second worst symptom is shortness of breath. I don't get it when you'd think either. While doing yoga or performing other "low impact cardio" exercise I am breathing consciously and feel just fine. It's the worst when I'm talking on the phone or walking clients around. By the end of 3 consecutive sentences I want to lean on a banquette and ask them to gimme a second like an old lady who had just sprinted to catch the bus with a overloaded pocketbook weighing her down. I literally start to feel light-headed, my voice starts to go and I have to gasp for air before I can continue. It's as if I was walking them through a desert in the midday sun. Ironic, that a professional bullshit artist like myself would have a disorder that makes schmoozing draining. I need to breathe super deep to get the same amount of oxygenated blood to circulate as a normal person. Too much talking = not enough breathing. Shut up Amanda!!
The first worst symptom though is the chest pain. It's not intense or particularly sharp pain but having any discomfort in your heart area is scary. It kinda feels like indigestion but when you've been told by cardiologists that your chest pains are actually symptoms of a heart problem, it takes the ambiguity out of the nervousness. No, it's not in your head. You're not being paranoid. That is your heart, sending out a small painful feeling to let you know that something ain't right in there. And I'm not gonna lie, that shit is not fun- especially when websites point out that "Sudden Cardiac Death" can be the FIRST symptom of my disorder. It's like knowing your husband is out cheating on you because he butt-dialed you mid-adultery and you can hear them getting it on vs having a sneaking suspicion of said adultery but with little to no proof. In that analogy, my heart is the husband...in case it wasn't clear. I'm having a little pain now. Gonna meditate in a little bit to try and get my mental state as calm as possible to hopefully mitigate the turmoil in my physical state.
So yes, meditation and yoga are both good for someone with ARVD. So is maintaining a healthy diet and weight. Sometimes I think about what might have happened to me if I was obese, or developed high cholesterol, or even continued running long-distance races like I did in my early 20's (hello, #1 cause of death in young athletes = what I have). I really think that something deep inside of me or maybe God (or my purusha for the yogis reading) led me to yoga and away from both wild partying and intense cardiovascular exercise. Both of those things could have killed me. I've unknowingly been "treating" my condition for several years now. My body's intuition led me to these healthy lifestyle changes that would keep me out of the real danger zone until my hard-headed self finally realized something wasn't right or um you know, got a physical once in 8 years...
But I digress...you asked how I was doing. Here's the answer: physically, I'm quite literally just hanging in there. It's not easy but I've only got 36 days before I get a 2 week nap and a temporary restart to the rhythm of my heart (yes, it's temporary. not short term, but not foreva-eva either). Mentally, I am great 90% of the time and 10% of the time I'm despondent and crying or fighting back tears. That 10% typically coincides with when my chest pains are the most acute and the anxiety kicks in. Emotionally, I actually think I'm better than ever. I have never felt more blessed or in love with myself in all my life. I appreciate my body and my existence in a really palpable way. I am starting to think about what REALLY matters and have sorta stopped caring about living up to other people's expectations of me. I've always been close to my loved ones but I feel like this diagnosis has brought us even closer together. I'm reading uplifting, spiritual, and health-centric books, avoiding stressful social situations that I never wanted to get involved in anyway, abstaining from alcohol, and adding salt to all my food (mmmm salt! delicious! also raises my creepy low pressure!).
One of my favorite meditations of late focuses on this separation of the self from the physical body. Sometimes it makes me cry, but in a good way. Like an emotional release. I think this could be useful for anyone struggling with self-esteem/body issues, unhealthy sexual promiscuity (hey cast of GIRLS-- I'm talking to you), addiction, or any other physically manifested issue. It goes:
"I have a body, but I am not my body.
I can see and feel my body, and what can be seen and felt is not the true Seer.
My body may be tired or excited, sick or healthy, heavy or light, but that has nothing to do with my inward I.
I have a body, but I am not my body."
Maybe the right answer is "I" actually AM fine. It just depends what your definition of "I" is.