Tag: congenital heart defect

The Ugly Truth

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The ugly truth is, all of this is easier without him. Something I have finally allowed myself to admit, to say out loud, to take the first steps to work through. I am not 8 years old anymore and hindsight truly is a gift to vision, and I see clearly that no matter how I wanted him to be different, he simply was who he was. 

I have debated writing this, wondering if this crossed the line of what I am willing to share publicly. I also know that I have many reasons for writing these excerpts from this time in my life and I want to tell this story fully. Letting this stuff out is helping me, but I am starting to see that it is also helping others. Lots of isolating feelings grow in the dark, the best way through them is to show them the light, and if showing some of those feelings the light here helps others, all the better.

My father was a simple man that in many ways was complicated. If you knew him you would probably describe him as the type to give you the shirt off his back. I can’t disagree. He likely was like that –  to you. It wasn’t so much like that with his family, at least not his daughters or their mother. There is a whole lot to that story that isn’t just mine to tell and so I won’t, I will only tell the part that is mine to tell. 

I don’t know if dad ever really knew how to cope with being a parent much less with being a parent of a “sick” kid. All I know is that every memory I have of my early life in hospitals, when my parents were still married, is of just my mom and I. Every doctor appointment, every hospital stay, every surgery. Just mom and I. I can’t say that is 100% accurate, I am sure there was a time or two he was there or it was him but I don’t remember. I know he took me to the ER twice with a broken arm, just he and I, once the first time I broke it on my roller skates and then again the day I got the cast off and broke it again falling off a horse he put me on. That was dad. 

Once my parents were divorced however dad made my medical appointments a spectacle. He had to attend every one and make sure he was as much the focus as possible.  He didn’t usually come into the room with mom and I, preferring to stay in the waiting room and play his favorite game “my kid is sicker than your kid” the prize?  The sympathy of strangers. I hated that game. If you know me at all you know, the last thing I want from anyone is pity or sympathy. Still, he played on. Every single appointment, I would come into the waiting room to some random person telling me how “strong” or “brave” I was. All I could think was how much I wanted to stomp on his foot and run to the car. I hated feeling like his little trained monkey. It was the same act with women he dated. It would come time for me to meet them and the only thing they would know about me is that my heart was backward. It seemed that was the only thing he knew about me either. 

As I became an adult our relationship became more and more strained. For reasons I no longer remember (likely spite), he wanted me off his insurance the moment I turned 18. It was really great insurance, I could have stayed on it until I was 26 but he wouldn’t have it. My mom took the insurance over. Even though my medication and medical care was extremely expensive, and he was financially very secure he rarely helped. He could buy all kinds of “toys” but it took near groveling to get any help with such expenses. He had this fun habit of waiting until the very last minute when there weren’t a lot of other options so he could swoop in and be the hero, strings attached of course. Always strings. 

In an effort to not sound like all I wanted from him was his money, allow me to elaborate further. I had many hospitalizations and surgeries through my 20’s and 30’s. I always made sure he knew about them. I made sure he knew what was going on, what hospital I was trying, what surgery, what medications, etc. I kept him in the loop, even if he wasn’t invited to be there because I was over his behavior when he came, he was always informed. Beyond the moment I informed him of what was going on, I wouldn’t hear from him. He never called, text, sent a card or a carrier pigeon. He never checked up to see how I was. Never. 

I had my first major surgery since I was a baby in that time frame. My chest was opened in three places, recovery was incredibly tough with a collapsed lung. I was in rough shape. He knew what was happening, my sister had called him. He never called me. My sister told  him how rough it was for me and still I did not hear from him. He did not call me. He did not check in. 

In the final years of my fathers life, as angry as I was about these moments I swore I would be the bigger person. If he was having surgery, I would drive the hours to where it was happening and I would visit. If he had a heart attack I would be there. I showed up. Every. Single. Time. And there were a lot of times. Those visits were not conditional, I was not going so I could say to him, “Hey I came and checked on you, you need to check on me.” I was going because I wanted to make sure he didn’t feel the way he made me feel when he didn’t at least check in and see if I was okay. I wasn’t going to let who he was change who I was. I was the kind of person who visited their dad in the hospital even if he wasn’t the dad who did the same. 

So the ugly truth of the matter is, all of this is easier with him gone. I don’t have to have my heart broken by his callousness. I don’t have to worry about him using my situation  to gain other people’s sympathy without my knowledge or consent. I don’t have to manage my disappointment when he isn’t the dad I always wished him to be. The kind of person most people would say would give you the shirt off his back, but wouldn’t pick up the phone for his own daughter. I don’t have to endure another heartbreak at his hands. 

There aren’t a lot of people who understand the complex feelings that come with having a father like mine. I get that. I am glad for that. Let me make one thing very clear, for anyone who may feel like this post is mean, or even cruel. I loved my dad, to the very end I loved him. Our relationship was complicated, and broken, and in many ways so was he. I know that. I have spent a long time and a lot of therapy  coming to grips with that. I have also learned that two things can be true at once. I can love my dad, I can even miss him, and still be relieved that I don’t have to endure more heartache. I can still be mad as hell for the way he let things play out, I can still be so sad that he never seemed to understand that I was trying to show him how to love me, and he just never seemed to be able to do it. It may be ugly, but it is the truth.

One of the biggest lessons I have learned in therapy is that sometimes people teach us really important things in really negative ways. My dad more than anyone taught me how to forgive. He taught me how to keep a cool head in the moments his was not. And most of all he taught me to remember what comes back when I give away my love, because it isn’t always the love you want or deserve.

“But most of all
He taught me to forgive
How to keep a cool head
How to love the one you’re with
And when I’m far into the distance
And the pushing comes to shove
To remember what comes back
When you give away your love”

Brandi Carlile – Most of All

Surprise! You’re sad.

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Lately my feelings have been a jack-in-the-box. Life just keeps turning the crank, and I think I am keeping it all together until suddenly, when I least expect it, pop-goes-my feelings. Usually this happens in the quiet moments before sleep. You know that time, if you’re like me, is some of the only time in the day where you give your brain a moment to get quiet and wander. Wandering minds can be a dangerous thing for people who are trying really hard to keep their thoughts and feelings in check. Even more dangerous are sleeping minds, minds that are beyond our control completely, minds that do whatever they need to do to draw our attention to the issue that we are ignoring. 

Let’s start with Monday. Monday of this week I woke up with a thud, a jerk of my head and body that was so extreme I thought for sure I had just experienced a shock from my ICD. I was absolutely certain of it. It is not a fun way to wake up, but it also was not the first time I have been awoken like this. I did a body scan. My chest didn’t hurt. My heart rate felt normal. I grabbed the blood pressure cuff I keep on my bedside table (doesn’t everyone?) and took my pressure, low but in the normal range. My head hurt pretty badly, but other than that, everything felt normal. I text my sister. She was present the last time this happened. We talked it through and decided that I should probably be very sure before I attempted to go to work. I messaged my work, it was 5 a.m. the doctors wouldn’t be in for hours still and I was exhausted, a little freaked out, and did I mention my head hurt? 

When I woke up and only my head hurt I was pretty certain I had a phantom shock. A real shock would leave my body feeling much worse for the wear. I slowly get myself going, I took a long shower, ate breakfast, and got dressed. I waited, did another body scan (when I say this I just mean I spend a moment or two in silence really feeling how my body feels by concentrating my attention on different areas) I felt okay. No shock detected. Why do phantom shocks happen? “They found that the phenomenon primarily occurred in patients with a history of traumatic device shocks, depression, anxiety and PTSD. They conclude that memory reactivation of traumatic events seems to contribute in the pathogenesis of phantom shock.” Clin Cardiol, 1999, vol. 22 (pg. 481-9) Basically, I have PTSD and somewhere squirreled away in my subconscious is the memory of the shock I received so many years ago and that I didn’t even earn but scared the life out of me just the same. Now, sometimes when I’m “fine” but not so secretly carrying around stress, that memory finds its way into my unconscious mind and rears its head forcefully, and convincingly. 

I mentioned this incident to my therapist I said “They say these phantom shocks are brought on by stress and anxiety. I thought I was doing okay, but maybe I’m not.” Her response? “Maybe parts of you are okay, and parts of you aren’t.” Shh. I’m fine, remember? She followed up, “My take is that you are feeling understandably vulnerable”. Ugh. I reminded her that to me that is the worst of all the feelings and quickly changed the subject. It is much easier to duck and weave from your therapist when you aren’t actually in their office where they can play defense or maybe it is offense…more directly. Also, she was right and I was in the mood to hate that. I feel like I spend a lot of time dealing with my feelings, I’m just not the greatest at truly feeling them. I have good intentions, and I mean to but when it comes down to it most often feelings have to catch me off guard and attack. 

Case and point an understandable but odd bit of sadness that struck me last night as I was falling asleep (I told you it is always sleeping or bedtime). I have a heart cath coming early next week and I was thinking of the things that I need to get in order beforehand. Suddenly I was completely overwhelmed with sadness. If things move the way my cardiologist predicted this is very likely the last heart cath this heart will have done. I am not particularly keen on heart caths or anything, they certainly don’t hold a lot of happy memories. Though there is that one time that Charlotte got to be my nurse and my femoral artery wouldn’t clot so we got to spend quality time with her applying direct pressure to my groin, that was kind of funny. That same visit Julie was the last nurse standing and we got to hang out until way past her shift ended because they wanted me to have a bed for overnight but one never came so Charlotte vouched for me that this wasn’t my first rodeo and I would return if I started to bleed out, (I did not in fact bleed out). So while I don’t have any particularly fond memories of heart caths it was just the thought of this being the first “last” for this heart. It struck me harder than I would have imagined. Lasts are hard, even if they are for the best.

It doesn’t help that you are talking to the person who personified everything in her youth (and maybe still has that habit). No stuffy slept on the floor for fear that I would hurt their feelings, when my mom got me a “pet net” for the corner above my bed deciding who went up there and who stayed on the bed might as well have been deciding who lived and who died. I guess in a not so subtle way I still feel like that now, this heart has been loyal, it has been through hell and back and done everything that was asked of it and more, replacing it feels like a bit of a betrayal and facing this first, “last” just really drove that thought home. So, the jack-in-the-box popped open and the feelings jumped out. It wasn’t so much the feelings, but the when and why that surprised me. I knew more feelings would come, I think it will continue to be a mystery what causes them and why I react to them. I will meet them as they come, and I will deal with them as they do. I have a target to work with, I have to start looking at the hard thing a bit more, so I can come to terms with what it means to say goodbye to the heart that has carried me when so many said it couldn’t. I have been given the gift of time to grieve and thank my spiteful, spitfire of a friend while it still beats in my chest. Perhaps, like most grief it won’t be something I completely get over, but something that dulls as time passes and acceptance sets in. 

What I Mean When I Say I’m Fine.

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What I mean when I say I’m fine. 

When I say I am fine, I mean that right now I am handling everything on my plate even if some of it feels like it is slipping to the edges. 

When I say I am fine, I mean that when I woke up this morning I was able to win the tug-of-war between staying in bed and starting my day. 

When I say I am fine, I mean that I can ignore the pain in my chest, and the way my head swims when I stand.  

When I say I am fine, I mean that I am taking care of myself, and protecting my energy, not that I don’t want you to bother me. 

When I say I am fine, I mean that I am doing the work, using my tools and keeping my mind right. 

When I say I am fine, I mean that I don’t care to talk about any of it right now, I have found my footing and I worry that talking about it will send me off balance again. 

When I say I am fine, I mean that I can’t stand to think about causing anyone to worry, so please believe me when I tell you that – I am fine. 

I am fine. I am okay. I am safe. (Is this a mantra I repeat to myself on the regular? Yes.) Depending on the day I am even doing pretty well considering. I feel like I am gaining a bit of stamina back for work, and it is becoming easier to make it through the week without feeling like my tank is completely empty. I have been slowly adjusting my mindset to accept my new baseline. A friend of mine who is a few years post transplant gave me that word, baseline. They expressed how much they hated the phrase “new normal” and I really feel that too. Nothing about this is normal. There is nothing normal with allowing yourself to slowly get sick enough to allow a team to take out your heart and give you someone else’s. I like the term baseline, and my baseline has changed and it will continue to change for a long while for the worse. I try not to think about that, I prefer to think about the time beyond that, when my baseline improves for the better. What a world that will be.

Mom and Me

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My mom came to visit this weekend. Sometimes you just need to see your mama before you can really, truly feel better. I haven’t seen my mom since before the bomb was dropped. Up until now, the only person in my family I have seen is my sister who was with me when I was told about the need for transplant evaluation. We were both in such a state of shock that not a lot of processing was done until well after we parted ways. It was good to see my mom, and take a bit of time to process together. To just be together.

When I was little and I had chest pain, or other heart issues, my mom would come and sit beside me on my bed and lay one hand over the left side of my chest and close her eyes. I could feel my heart beating against her hand, and she would count the beats, feel my breaths. She has done this for years. There is absolutely nothing scientific about this way of determining pulse or respiration, but I know it isn’t just me that feels better when my mama’s hand is on my heart and we can feel it beat together. I know that my heart slows down in those quiet moments, and with her hand on me, my body relaxes, my breath comes a bit easier, my mom is there and I can feel my heartbeat, and I am okay.

There is not a moment of this road I have walked without her, and we have both stumbled here and there but I know that – this heart or the next, my mom will be right there beside me, counting the beats and easing my fears.

Love you mama.

Why I Dislike the ER.

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Earlier this week, I didn’t feel well. About half way through my day on Monday I started feeling off. I was tired – not all that out of the ordinary, I was lightheaded – this was out of the ordinary, and finally I started experiencing chest pains, this was worrisome. I decided this trifecta meant it was time for me to go home. I probably could have pushed myself through all of it and made it the end of the day but, I have finally learned that just because I can doesn’t mean I should. In an effort to assure my friends, colleagues and family that I am not the same person who would push until she found herself passed out in the middle of a classroom, I am doing my best to listen to my body and stop while I am still upright. It’s called character growth people. 

Once safely home and laying in my bed I did all the things, checked all my vitals, determined nothing was “off”, and then I sent messages to all my clinics describing my symptoms. This is the actual message I sent two clinics, one to my PCP and one to my cardiac team:

 “Experiencing some symptoms today (Monday) that aren’t necessarily new but the combo is. Having some issues with intermittent chest pain (center of chest), fast beats, lightheadedness, nausea, headache and occasional dry cough. I am holding more water than usual, and my weight is up about 1.5 lbs. I assume this is the culprit, but am hoping to get a once over just to be sure, maybe check enzymes and listen to the ol’ lungs.  I left work early today as it was next to impossible to work and plan on staying home tomorrow. I have not gone to the ER because everything is within manageable levels. My BP is good (100s/60s). My heart rate is steady (70s-80s). My O2 has been 96 or more and I am keeping a close eye on all of it. Just want to double check I’m not ignoring anything I shouldn’t be.”

Does this sound  like someone in distress to you? No way. It sounds like an absolute boss who knows what she is talking about. I heard nothing from anyone that night. To me, this was confirmation that I was probably fine. Talking with MY team (my family) we agreed that everyone would feel better if I was seen before I went back to work. That would be my mission for the next day. 

I woke up feeling better, not great, I wasn’t going to go run a marathon or anything but I was feeling better. By 10 a.m. I still hadn’t heard from any of my clinics so I put in a call to my PCP requesting an appointment. Usually, this isn’t a problem. My PCP and I have a good relationship and she knows that I would rather do just about anything than come see her, so if I am calling she tries to get me in ASAP. After several rounds of back and forth with her nurses (all of whom are new or temps, her regular nurses were reassigned during the pandemic and still haven’t been given back), it was obvious that there were no appointments to be had that day, not even for me. The scheduler gave me an appointment three days away. I figured this meant my doctor wasn’t super worried. I was wrong. About an hour later I got a call from another nurse telling me that she spoke to my doctor. I was so happy, I was certain my doctor hadn’t even been made aware it was me and they were calling to tell me that she said to come in and she would work me in. I was partly right. My doctor had read my note herself and she would like me to go ahead and go to the ER.

She knew I wouldn’t like this option but she told her nurse to tell me that she knew I trusted her and that this was the best thing with my symptoms. She was right. I did not like this option. I did not like that from my perspective, she was afraid to have me in her office now that I am in more advanced heart failure. I did not like feeling as though, despite all my self awareness and charm, I am a bigger liability and charm doesn’t trump liability.  None of this really mattered though, she had already called the ER and told them I would be coming. I briefly thought about not going, there were several issues with this however. First in my mind, if I didn’t go I was not going to get anyone local to check me out in the way I wanted. I needed blood work and someone to check and make sure there wasn’t an abundance of fluid in my chest. Second in my mind, if I didn’t go would it somehow get back to the transplant team when they were trying to determine if I was a compliant patient? I did not want to lose the opportunity to get a transplant because I was being stubborn about going to the ER. I grabbed my things and went to the ER. I did not call anyone to drive me as suggested, after all this was stupid and I can do all things through spite which strengthens me. 

I’ll spare you the details of the check-in and triage though I have thoughts about how both of those could be improved. For one I was given an ECG in a waiting room (yes it had a door) but it was only being done so they could meet the STAT requirements of the test before they sat me in the waiting room for an hour. I understand they are short of staff, I get that they only have as many beds as they have staff for, but they even told me that they were doing the test so they would meet the time requirement even though I would still have to wait. It just seemed dishonest? If you have wait times, you have wait times. Don’t try to fake it. Anyway, I said I would spare you and here I am talking about it. 

An hour after arriving I am given a room, a gown and the nurses (amazing nurses) start attempting an IV and blood draw. I am a notoriously hard stick. I always admit to this. My spiel is “I’m a hard stick, I know it, I don’t hold grudges, go where you have to go and I won’t complain about it.” They always laugh like they think I am exaggerating, and then they are shocked when they cannot stick me the first, second, or third time.  This nurse only tried twice before she called in back up. In her defense my arms are a bruised up mess from failed and successful tries for IVS during the last three weeks of IV iron treatments. The second nurse came in and took his time looking and analyzing. He commented on how beat up my arms were, I agreed. Then he went for a “juicy one” in my inner bicep on my right arm. It was a weird place for an IV but it worked on the first try. I was grateful. 

From the moment the doctor walked in the door I knew this wasn’t going to go well for me. I want to preface this by saying that I do not fault any emergency room, non-specialized doctor, for not having a firm understanding of congenital heart defects or their repairs, or what treatment makes sense for them. What I do have a problem with is when they don’t listen to the words coming out of my mouth, won’t admit they don’t know what to do, or consult someone who can help them better understand. That my friends is what is called a dangerous situation, and on Tuesday for a bit of time I was in a dangerous situation. 

First, I was “too young for an ICD” , never a good sign. “Why haven’t you been seen by our cardiologists in town?”  Another bad sign, I attempt to explain that they are not specialized enough, he tries to tell me their doctors are highly trained. I give up, he is committed to not hearing my words. Then after my x-ray came back he “didn’t understand why they had my leads placed epicardially” when I tried to explain he shrugged me off, and did not care to hear. He tells me everything has come back good, but with my symptoms, they need to schedule a heart cath for me in town the next day. He knows I have one scheduled in Nebraska in a few weeks but I need one now with my symptoms. I attempt again to explain that the reason I am here is because I wanted to make sure I wasn’t ignoring something I shouldn’t be. I walked in knowing my vitals were normal, and that none of these symptoms are out of the ordinary and that if my labs and x-ray are okay, then I am okay. He tells me he wants to make sure that I don’t have a blockage in a coronary artery, I tell him I don’t have acquired heart disease, and my heart failure is due to my great vessels being backwards and having a systemic right ventricle. I also let him know that you can’t just give me a heart catheterization, even my five time board certified cardiologist isn’t giving me my heart cath, he has a pediatric cardiologist coming in to do that because they are more familiar with my anatomy. This barely gave this doctor pause, he told me to get ahold of my clinic and have them call him. He left the room. Leaving the door open…again. This may have been my biggest beef with him. Every time he left he left the door wide open, curtain pulled yes, but the door wide open. Did he forget we are still in a pandemic? Did he miss the part where I am immunocompromised? I was so annoyed. 

To make this very long story shorter, I will get to the punchline. I called my nurse at the heart clinic. She was confused as to how I found myself in the ER in the first place. I explained my PCPs new found gun shyness and her recommendation. She understood that, what she did not understand was how this ER doctor got to the belief that they should be giving me a heart cath. Almost at the same time we said “They are treating you (me) like you have acquired heart disease.” YUP! Within the half hour, not my nurse, not the on call doctor, but MY DOCTOR, was on the phone with the ER doc and told him that he would not be giving me a heart cath, that he had personally looked at all my test results and that he should release me. THANK YOU Dr. Tsai. I was released within the half hour, begrudgingly. 

No Safe Place

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Mo Practices Mindfulness and Meditation: A Play in One Act

We open on Mo in her car driving home from her ophthalmology appointment. Mo just learned that at 36 she likely is suffering from glaucoma which is causing a rapidly growing blind spot in her left eye. Mo has had a rough week, she spent Tuesday night in the ER and was admitted to the hospital because of chest pains (she is going to be fine). Feeling as though a melt down or panic attack is imminent Mo decides to listen to the PTSD meditation she downloaded.

Gentle music plays, and a male voice begins to lead Mo through her meditation. Mo giggles a bit when he reminds the listener that recorded meditations are not intended to replace in person therapy because, no shit. Mo breaths as instructed and begins to visualize the safe place the man on the recording asks her to and then…

Meditation Recording: You are relaxing now, you are safe here in this place, in your body…

Mo: What? No, I’m not…ohhhhh shit.

Mo stops the meditation as she pulls to a stop sign.

Mo: Holy shit.

Mo is not used to figuring things like this out on her own. She realizes that the man on the recording is very right about going to therapy for your PTSD, because she probably wouldn’t have figured this out 6 months ago.

Mo: Well, that explains a lot.

Mo realizes that it is weird to talk to yourself in your car and that there is a car behind her. She pulls away from the stop sign and finishes her drive home in silence.

End.

Tonight, I realized I don’t feel safe, even in my own body. I can lock the doors and windows all I want, but the boogeyman is already in the house, the boogeyman is in me. I used to say that it felt like there was a time bomb in my chest and I was always waiting for the beat that would set it off and make it blow, I thought I was over that feeling after my defibrillator fired and I survived it. I guess not. It seems like every time I turn around there is some part of my body betraying my desire to push through and ignore it all. Maybe I need to stop ignoring it, maybe that is the wrong way to approach it. Perhaps I should try embracing it. Ignoring the bully isn’t making it go away so perhaps I have to kill it with kindness.

In therapy we talk about trying to think of all the positive things my heart condition has given to me. Sometimes it is hard to make that list. I feel like it is constantly taking things away, and even if they are things I never wanted in the first place, I wanted to be the one that said so. No one likes being told what they can and can’t have, what they can and can’t do. I am not even sure if these things are actually things I don’t want because without knowing a life without this time bomb hanging above my head, there is no way to know what I would want if it weren’t. I’m in a loop of constant frustration. On one hand I am thankful for this thing that has given me buckets of empathy for others, and perspective that few people have, and on the other I am just so angry that so much of my life’s trajectory is outside my control. And before you get all up in my comments telling me that no one is in control of the trajectory of their life, sure, fine, you’re right, we could all be hit by trucks tomorrow, I get that, but most of you don’t live with a tiny truck inside your body that is constantly (and since day one) wrecking into things and ruining your plans, you just don’t.

So, I don’t feel safe in my own body. Now what? I guess, we all have to stay tuned to find out. 

Broken Hearted

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feea86610fe37034b00ea7bd253431c8I talk about my heart a lot. I talk about how it works, and how it doesn’t and all the ways it is not typical. My heart is a special heart, it is it’s own little science experiment, my personal Frankenstein’s monster. People ask me about my heart a lot, they wonder about how it works, how it beats, the blood it pumps, the way it pumps it, how it sounds, what it looks like hooked up to all the wires inside my chest. They ask all these questions about my heart, the organ that sustains my life, but it is rare they dig in to that question. Currently my heart is broken. I am not talking about my physical heart, though yes, that one is broken too. I am talking about my metaphorical heart, the one that cares and loves and needs other people to make it content. A few months back it was shattered when suddenly I was faced with a world without one of my very favorite people in it, one of the ones who knew me and loved me best. The breaking was instant, the shock an explosion, the heartbreak more than I could have ever imagined.

I am not a cuddly person. No one would describe me as either touchy nor feely. I am an introvert. I like my space. I have crafted a bubble so big and well decorated I would never have reason to leave it. I am content in my bubble. Happy even. I was perfectly happy to live there in my bubble, with a few people allowed in from time to time, but no one ever invited to stay. Then in walked Nick and he took a pin to that bubble within moments. No bubbles allowed with him. He was a “Sorry, you’re rad, I’m rad, we’re best friends now.” kind of guy.  That was how it was going to be and that was how it was, from the moment that red headed riot walked in to my world there was a strict no bubble rule. If we were within 5 feet of each other we were hugging, or laughing, or talking about things that I am not sure either of us ever told anyone else on this planet. Our bond was a little different than all of my other friendships, there was a kind of unspoken rule that whatever we shared with each other was ours and not for public consumption. I’m not sure if it was because we only saw each other one week a year at camp, or if it was just because somewhere down deep our souls seemed to know each other, but it was like having a priest, a therapist and an insult comic for a best friend all at once. We were going to be there for each other, talk about everything, keep it honest, keep it between us, but we were also going to take any opportunity we had to bust the other one for being ridiculous, and I loved him for that.

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The morning that Charlotte called me and told me that there had been an accident and Nick had suffered a gunshot to his head was the start of this period of time that has felt like it was moving in slow motion. I erupted in a screaming wail of a cry, the likes of which I hadn’t experienced since I was a child. I am normally able to stifle my emotions, hold them in, keep them to myself and process them on my own but this pain was too big, the shock was too overwhelming. Sweet Charlotte sat on the phone with me and comforted me as best she could while being extremely real with me. While he was technically still alive there wasn’t much hope that he would be able to survive this. I remember her telling me “But I am talking to a miracle, so I believe they happen every day” and that made me cry even harder.

It had been a year and a half since Nick and I’s tearful goodbye at camp. He was moving to Hawaii and I was convinced I would never see him again. Sadly this time my anxiety was correct, I would never see him in the flesh again. The last time we spent together we had one of the hardest and realest conversations of our friendship, we talked about that thing that we never really allowed ourselves to talk about, we talked about death, more specifically the likelihood of my death or that of one of the others at camp. Nick had been coming to heart camp for years, but he wasn’t a “heart kid” he was healthy, he just really loved us and even after the summer he volunteered for his confirmation hours, he wanted to come back, over and over again. He loved us, and he made us laugh, he grieved with us, I never thought about what it must be like to be the guy who didn’t have a time bomb in his chest, surrounded by people he loved deeply all with time bombs in theirs. I took him to Taco Bell after we ran a camp errand and the conversation turned serious. Another counselor wasn’t looking good that year, and we openly wondered if they would be with us in a years time. It was then that Nick told me how it felt to be the one who would likely outlive us all. It broke my heart. He cried. I hugged him. He pretended to be mad at me for making him love me so much. I assured him that I was going to live a very long time. I guess I wasn’t wrong about that. Here I still am. We couldn’t have possibly seen this plot twist coming.

In four days I go back to camp for the first time without Nick on this planet, there will be no texts, no phone calls, no FaceTime. If something is funny, or sad, or frustrating, he won’t be the one I tell it to and it is the worst feeling in the world. I miss him every day. He made me more “me” than I have ever been by being a safe place to be whoever that is. I don’t know if I ever will have that kind of friend again, and if I am honest, I am not sure I want to, I feel so lucky to have had the time I had, even if it was cut much too short. It feels greedy, and a little bit like a betrayal to hope for it again. Maybe one day, when the hurt isn’t quite so deep, and the grief so close to the surface, but for right now I am just happy to have ever had a friend like him at all. I hope you have a friend like him too.

Circle

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Two months ago I had the wind knocked out of me both literally and figuratively and since then, things haven’t been quite the same. It shouldn’t have been a surprise when after four years living with my ICD (internal cardiac defibrillator) it finally had it’s first go at “thumping” me.

I was on a photo shoot, I was playing with a kid getting him to smile in spite of his instance not to, he was good but I was better. Sure, that smile only came as my physical comedy got more involved but it came and once I had it I was determined to keep it going, my body however had another plan.

Silence. That is what I remember, it was just so quiet. All the noise of cars going by, and the kid laughing at me, and my fellow photographer talking, it all faded to nothing. My vision went from bright white to deep black, and then at once came back with a tremendous thud in my chest. It hurt, it hurt like nothing I’d ever felt before, not the worst pain of my life kind of hurt, but a hurt I had never experienced and couldn’t describe to you accurately if I had unlimited time and words. The best I can come up with is hitting your funny bone, with a sledgehammer, while grabbing hold of an electric fence, while licking a nine-volt battery. It was impact and electricity at once.

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