Tag: journal

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.

New Path

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Every six months I steady myself. I spend a couple therapy sessions talking about my anxieties and worries about my impending cardiac appointments. We talk about all the ways I feel well and all the ways I want to feel better. We talk about the types of testing that will be done and the various ways I dislike the tests and how I can better tolerate them without resorting to complete dissociation which does no one any good. We talk about what I would like to hear and the things I am worried I will hear. I prepare. I am ready. 

Yesterday was my six month appointment at The University of Nebraska. I have been seen there for the last two years and really like my team. I trust them and their style of care. I feel safe there. Since starting with them I have alternated testing; echos in the winter, stress tests in the summer. Yesterday was the stress test. 

I have a long standing hatred of stress tests. If you’ve never had one let me paint a little picture for you. First, you are hooked to a six lead EKG unit which is fastened to your waist. Then a blood pressure cuff and pulse ox on one arm. At this point you are put in either a treadmill or a stationary bike. Thank goodness I do the bike these days because the treadmill is a level of torture I do not wish to ever experience again. Once mounted on your stationary steed comes the nose clamp preventing you from breathing out your nose and the mask that straps to your face like an unruly octopus with a tube that goes in to your mouth so all of the oxygen you take in and blow out can be measured. It’s a real treat. Then…you pedal while monitored by the nurse and a cardiac specialist. And being the sadists they are, they increase the resistance steadily while you have to maintain speed so data can be collected. This goes on as long as you can stand it, preferably at least 8 minutes, until your heart rate hits 160 and in my case everything including your brain has turned to jello. 

I have been “studying” for this test for a year. I got a stationary bike in my house and I used it as much as I could. I really did poorly on it last year and I was determined to go longer and get better data this year. To be fair, that goal I did achieve. I was able to test for longer and get better data. 

“I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome.”

This is the part that I hope you’re still here for, I don’t want to have this conversation over and over again. I’m not sure I can take it. I want to rip it off like a band-aid and just have it out in the world. I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome. I say that as much for myself as anyone else.

Yesterday, during my appointment, the one I went in to with the good attitude, ready to hear good news, turned on me pretty quickly. I have known for a long time that my heart is not in great shape but I have been hopeful that I could somehow control the situation. Diet or exercise my way out of the natural progression of my defect and it’s repair. That just isn’t how it works. Small issues I’ve been having for months turn out to be indicators of a larger issue. My VO2MAX score was 11. Last year my cardiologist was not comfortable with it being 13. A “normal” 40 year old has a score between 36-41. 

What does all of this mean? Well combined with other smaller issues, increased swelling in my limbs, cramping, tiredness, it means that my heart failure is progressing. It means that my heart is not able to oxygenate my body like it could before. It means that it is time for us to bring in the Advanced Heart Failure and Transplant Team and get them working with me so that when the time comes no one is in a rush and we have time.

It was a blow for sure. It was a shock. And I am dealing with it in waves. I am having moments of extreme commitment to doing all the things right to make sure I am in the best shape I can be when the time comes for whatever is next. I am having moments of angry tears and sadness. I am having all of it and damn it if I’m feeling it all (stupid therapy, stupid “feeling your feelings”). 

So this is the news. This is where I am. I am okay. I have the best support system. Nothing is happening yet. Things will move slowly for a while. I just put my foot on the start of a new path. I just admitted that there was nothing I could have done to change this. I don’t have control of this and goodness do I love control. I want you to know because I don’t need or want pity. I am okay. I am the same person who walked in to that appointment yesterday. I am curiously strong like an Altoid. I may be a little slower these days but I am strong. I will need help and support to stay the course, to watch my salt, to not overload on water, to eat heart healthy, to move as much as my heart will allow. I do not need to be treated like I am fragile, I need to do as much as I can as long as I can. I can do it. I’d like you there with me.

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.

Pressing Play

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For the last six months I have been scared. If you asked me in person how I’ve been of course wouldn’t just come out and say it, but while my mouth was busy saying “Oh, I’ll make it.” my brain has been shouting “I’M FREAKING OUT MAN!”.

Getting defibrillated shocked me you guys. Pun intended. It was not something I had on my radar or schedule. It knocked the wind out of me, pun again intended, and for a long while I have really been just kind of coasting along. I’ve avoided anything I thought might have even a slight chance of bringing on anything like that again. I have been through about five overhauls of my meds. I’ve been to therapists, I’ve meditated, I’ve tried just about everything to stop freaking out and over the last few weeks it seems I just have. I’ve stopped freaking out. I’ve been searching for something to make me feel better these last six months, something to make me feel safe in my own body again, and have found nothing. It seems to me the answer wasn’t something to be found through medicine or mental health care (though both are super important). I think it just took time, six months to be exact.

It’s taken six months to get in my car alone and drive across the state to see my mom and gramma. It’s taken six months to feel like I could make a single plan without first considering all the potential risks for another doozy of a heart rhythm. This has happened to me before. Something bad happens and I just stop moving. If I hold very still perhaps the bad thing will go away. I press pause on my life and retreat in to the places I know I am safe. I cocoon better than anyone you’ve ever met.

After six months being in my cocoon I am ready to go again. It doesn’t matter to me that soon my ICD will start singing me it’s critical battery song. I’m still going to St. Louis for a dear friends wedding this weekend. It doesn’t matter that for some reason I cannot seem to get extra fluid to get off and stay off, I am going with my aunt and uncle to a Garth Brooks concert in a couple weeks. It doesn’t matter that I have to get blood work at least once a month (but more like constantly) forever. I am going to that NWSL soccer match I am super excited for.  I doesn’t matter that I know I am going to have to schedule a device change in the next 8-10 weeks, I am still going to have a happy birthday, a fun family vacation and whatever else I want to do until then.

Am I sad I’ve spent the last six months on pause? Not really. I firmly believe that my body and mind know exactly what I need to do to get through anything. I actually have no evidence to the contrary. I have survived everything life has thrown at me thus far, and my plan is to keep up the good work. play

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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