Enough

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I have struggled much of my life with the feeling of enough. Being a sick kid I was always worried that my contribution to my family wasn’t enough to outweigh the cost of time, money, and mental bandwidth my illness required. Once upon a time, and more than once my father remarked off the cuff that I was “more trouble than I was worth” to him the comment was a joke, it was innocent, it was a throwaway remark meant to tease me about my clumsiness, and my tendency to end up in the ER. To me it was an admission, he confirmed what I was sure I knew, I was not enough. 

Therapy has helped. I have learned that my worth is not derived from others. The concept of enough however seems like it is ever-present. Lurking. Cruel. Being enough. Not having enough. Having ENOUGH. 

This transplant journey has brought up its own enough. Is how I am living enough? Have I truly had enough? Am I sick enough? Am I worthy enough? 

One of the hardest things about being an adult with a congenital heart defect that is being considered for a heart transplant is that a lot of the usual ways of determining candidacy don’t align with the issues that we have as our health declines. To look at me, most people wouldn’t believe I am in end-stage heart failure, but here I am, crushing it. The thing with people with CHD is the decline in our health is often so slow, over a lifetime, that in ways we almost don’t notice our quality of life slowly slipping away. Tests meant for acquired heart disease don’t always accurately measure how sick we are, or how sick our hearts are, because the very structure of our hearts isn’t typical, and neither are the ways in which it can fail us. For a long time, doctors told me that a big indicator of whether or not it was time for me to have a transplant would be my ejection fraction (the amount of blood your heart can squeeze out each time it constricts), when last “measured” my EF was 25. In a typical heart, an ejection fraction in this neighborhood would put you on track for a transplant. For me? I got a defibrillator and resynchronization therapy. That has worked fairly well for me for the last 10ish years, during which time the medical community has decided that ejection fraction is actually not a useful or accurate measure for people with a systemic right ventricle (the one that does the bulk of the pumping) like me. More recently I failed with flying colors a different test that would indicate heart failure and transplant, but my heart cath looked “good” for someone with my defect. The question now is, am I sick enough for a transplant? A question and answer that is way out of my hands. 

The caveat of “for someone with TGA…” has been thrown around a lot in my life, it is often used to curb enthusiasm and lower expectations. It often feels like  “Don’t ask for more than you have because, for someone with TGA, you should be thankful just to be alive. That should be enough.” Do not mistake me, I am incredibly thankful for the series of events, and miracles even (and there have been many) that have led to me being alive at 40 but, I am no longer sure that not being dead is enough. I miss living. I miss the freedom of a more healthy body. There are things that I don’t even know that I miss because they are things that I have never known. It isn’t that I am not happy, we all know that I am a generally happy person. It isn’t that I couldn’t possibly continue to coast. It is that it isn’t enough anymore. As Albert Einstein (or maybe John Shedd) said “A ship is always safe at the shore, but that is not what it is built for.” it is true that I might be safe, but this isn’t what I am meant for. 

On the other hand, there is the magnitude, the cost of the gift I am asking for, the desire I am putting into the universe, and the price of taking my ship out of the harbor again. Could anyone easily say they are worthy of such a gift? I have been uniquely close to both sides of organ donation. So many of my friends have received the gift of life and in my second-hand experience receiving an organ is a solemn celebration. I have also known the pain that comes with losing someone I love dearly tragically, and the heartbreak of letting them go. It is true that knowing when I lost my friend others were given a chance at life through the gift of organ donation was comforting and the choice made by those that loved him was absolutely the one he would have made himself. Knowing that isn’t enough though, it isn’t the same as being able to laugh with my best friend, hug him tight, and listen to all the ways what I am writing right now is valid but in the end, doesn’t matter because I deserve to be happy and healthy both at the same time. Dammit. This is not where I thought this entry would end, but I feel like I reached a conclusion, with the help of my friend. I deserve to be happy and healthy at the same time, anything less than that isn’t enough.

It’s not tomorrow.

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“It’s not tomorrow.” 

That is the phrase I have been telling myself and my mother at the end of each conversation we have had since Ashley, the nurse coordinator and my self-proclaimed “newest cheerleader” handed us “The Packet”. Perhaps not THE packet but definitely a packet, a packet that indicates we have taken another step in this transplant process – a packet outlining a whole lot of scary scenarios and less than favorable outcomes. “The Packet” includes a whole lot of places to sign acknowledging understanding of all kinds of things, I would tell you what but if I am honest, I have only skimmed “The Packet” I am not quite ready to read it in full. I am going to take it to work, scan it in, send it out to my team and hopefully soon we can talk about it together. I don’t want it to live in my head with just myself to absorb it, I want to look at it with MY team ready to help me interpret, dissect, and digest its contents. 

Until now I have only been monitored by the Advanced Heart Failure and Transplant clinic, with the knowledge that transplant is in my future. During my appointment this week, on the suggestion of my doctor we have taken one more small step and I will be doing the actual evaluations for heart transplant. Please understand, this is still the very base of the mountain. There are many hoops here as well, many approvals to get, and then many tests to schedule. 

THIS DOES NOT MEAN I AM OR WILL BE LISTED ANY TIME SOON. 

Read that again. I am not listed. I may not get listed at this point. If I am listed after this, I likely have a very long wait ahead. This is all just the evaluation process. I am super stoked to have found out during this appointment and testing that there are no concerns about my liver currently, which can often be the case in people with congenital heart issues. We can all celebrate that. As Bruce Bryan would say “Put that in the W column.”

There is still a lot of time in this process. There are still a lot of unknowns in this process. There are a lot of big feelings in this process. The only thing I know for sure right now is, it’s not tomorrow. My family and I have time to absorb and digest this information, and as always I promise to update when the situation changes. I appreciate all the love and support from my people. You all have made your presence known in ways I did not expect and am not entirely certain I deserve, but I am grateful. 

Until next time.

Ease

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When my therapist first suggested the idea of group therapy for me, I was skeptical to say the least. I had a hard enough time in my own company, with my own issues, I wasn’t sure how I was going to enjoy or interact with others and theirs. Much like with the other aspects of trauma recovery I have been through I rolled my eyes, but agreed to try. Skeptical resignation is my thing, my therapist understands, she is less concerned about how I start and more concerned about where I finish. I came to her office because I was ready to try someone elses ideas of how to cope, that didn’t mean I was going to do so with a smile on my face and a spring in my step. Old habits die hard. 

It has now been two years since I started group. Last week, I attended my last meeting. Over the last two years I went from group therapy skeptic to true believer. Much like a summer camp full of people with hearts like mine, a room full of people who were all on the same path of healing – even if the place of origin and destinations were different, created a space for rapid healing and leaps that I am not sure could have happened in a one-on-one. 

As our therapist began our last meeting with a short catch-up something struck me, it seemed that all of us, even our leader, had spent the last few weeks decluttering, down-sizing, donating, and throwing out things that we no longer wanted or needed. Turns out that along with letting go of the habits, behaviors, people and relationships that no longer served us, we were doing the same with tangible things. There had been no homework to do so, no prior plan for this to be a group cleanse. It seems that the connection between feeling stuck and having stuff is real and as we were all becoming unstuck, the stuff was also falling away. 

For me the impetus for purging came down to one word. Ease. There has been a trend over the last few years to choose a word that you want to describe the upcoming year. A goal of sorts, a resolution in a way, a word to work towards and make a reality in your life. While I am not one to follow the pack, it became apparent in the latter part of 2022 and the beginning of 2023 that my word is ease. I didn’t even really pick it. It picked me. At the intersection of healing and progress was one desire, ease. I am tired of fighting against myself and against my life. My therapist loves to remind me that “what you resist persists” and through years of progress I grudgingly (I didn’t say ease came natural) can admit that tends to be the case. 

As I prepare to move forward down the road of transplant I don’t want to be or create my own obstacles. In my summation, the more ready I become now, the better off I will be when the time comes. The last thing I want is to get the call and go for the biggest moment of my life, and have more layers of stress because the state of my apartment, or the amount of absolute junk and nonsense I am leaving for other people to handle while I recover. Ease now, is an investment in peace of mind then.

Sideways

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Sometimes, even with the best doctors, and the best teams things go sideways. As far as I can tell the reason for this? We are all humans, and as my nephew once said when he was three or four “We are just made of meat.” Sometimes the truest words come out of the mouths of children. At the end of the day, we are all just sentient meat sacks doing the best we can. The hard part, when you are dealing with matters like your health and life, is deciding how human you are willing to let the people charged with taking care of your needs be. The even harder part for me is not letting a bad day make me lose trust in the process irrevocably. 

Over the last few weeks, the subject of my upcoming appointment with my ACHD (adult congenital heart disease) doc has been ever-present. Due to my struggles with PTSD related to medical situations, I spend copious amounts of time with my therapist preparing for appointments. I do my best to work through any feelings I may have leading up to the appointment, any apprehension, doubts, worries, fears, or frustrations. We work together to get to the bottom of what I am feeling and try our best to prevent problems before they arise. The enemy of anxiety is preparation. 

The biggest hiccup for this appointment? I would be going alone. This was by my own design, I had many offers for the company of my family. All they need is a little forewarning and planning and any one of them could have been present, but I was certain I wanted to do this alone. I had things I wanted to discuss one on one with my doctor and now that the hard part of hearing out the transplant doctor was over, I felt like I could manage a measly ACHD appointment with ease. More than that, there was a not insignificant part of myself that needed to know I COULD do this on my own, that I wasn’t so stunned by recent revelations that all the progress I had made in becoming a mature, informed, self-advocate who could stay present, even in the face of troubling news hadn’t been undone. I was bound and determined that this visit would be just me and I was excited about it. 

My plan was pretty simple. I had a few mundane things to talk about in reference to making myself feel better in the short term. Additionally, I wanted to have a frank discussion about where I stood as far as transplant was concerned. I expected to tell him how I have spent the three months since I was, in many ways, blindsided by his revelation that it was time to start the discussion about transplant and had been preparing myself mentally for the prospect. I wanted to let him know how far I had come in that process and how confident I felt that this is the right path at the right time, and I am in the right state of mind. I was going to discuss how I was feeling tired of trying one more thing that likely would not work, how I have been bone tired all the time, and that I have not been able to do the things I was able to do even a year ago, and how the simplest things like laundry have the ability to wear me out. Lastly, I wanted to have what to me was the hardest part of the conversation, a discussion about what kind of outcomes he had seen in those with anatomy like mine, post-transplant. All this and I was ready to do it all myself, as a grown, capable adult human. 

My plan went sideways almost instantly. When meeting with the fellow before I saw my doctor, I could tell that he was having a hard day. The man who has always come into my appointments well put together and with a pep in his step was disheveled, obviously tired and stressed, with the messed up mane of a man who had been gripping his hair in frustration. As I answered his questions, he seemed unaffected, and even uninterested. I felt myself starting to drift from confident to triggered. There have been many times in my life where I have felt, justified or not, that doctor’s interest is dependent on the emergent severity of my symptoms. So it was pretty triggering to feel as though my mundane complaints were not interesting to a member of the same team that had told me that in situations like mine decline and decision to list a patient isn’t usually emergent or extremely symptomatic, rather it is a slow decline in quality of life and abilities. I did my best to stay present. I decided to swing at the low-hanging fruit, wondering out loud if once again tackling my iron deficiency was worth a shot for short-term energy. I was concerned about some chest pains I had been experiencing, “likely musculoskeletal” was the answer I received with no follow-up. I expected that as it often is, I have a condition similar to arthritis that affects my chest wall. Finally, I told him that I wanted to talk to my doctor about my decreased endurance and tolerance for exertion, and how even with the new med, it was not improving. 

When my doctor entered the room he was as kind as usual, though he did seem tired. I don’t know where these two men had been before they were in this room with me but I had the distinct feeling wherever it was, they had been there a long, stressful time. The appointment started as expected, my doctor asked how I had been. I once again explained how I was feeling tired and while the new medication my other doctor had started did seem to help a bit, it was not life-changing. I expressed how I had made some changes to my diet as well in an effort to lose weight and restrict my sodium even more, but I was still feeling as though I was ready to start moving in the direction of heart transplant testing. It was here where things began to go sideways.

At my previous appointment my doctor made it abundantly clear that I could not diet or exercise my way out of the heart failure I was faced with, go back to the blog entry, I talked about it there too. Of course, those things were important as always, but they were not going to “fix” the issue at hand, nor was the issue my fault because I was overweight and out of shape. This conversation was immensely appreciated because as much as I might know that deep down, it is a hard thing to remember when you feel like perhaps your heart is fine and the only issue here is being completely out of shape. Today, when addressing my tiredness he went right to my excess weight and the need to change my diet. Did he not hear what I had just said about eating tasteless, high protein overnight oatmeal for breakfast every day, and changing from lunches of leftovers or at worst vending machine food to a vegan, plant protein shake? Did he not remember telling me to do what I could, when I could? I was telling him that at the end of my day of work where I usually walk almost 3 miles, I had nothing more in the tank. I could barely make myself dinner before crawling into bed and trying again the next day, much less taking a walk or jumping on my bike. I felt like I was spinning out, and that despite my efforts I had failed. At that moment my PTSD brain started reaching for survival mechanisms. 

He went on to address my question about the potential of moving forward with testing for transplant. I wish, dear reader, that I could tell you what was said here. I wish that more than anything, however, my amygdala finally overpowered me. That lizard part of my brain completely shut off any part of my brain that could absorb information. The lizard was off the leash and I was out of the driver’s seat, and by the time I caught the lizard’s tail and clawed my way into the passenger seat, the conversation was all but over and the parts that I could recollect were not at all what I was expecting. Under better circumstances, I would have asked questions, gotten clarification, asked what had changed, and why his opinion was different from that of my other doctor. I would have done a lot of things differently if but at this point I had been triggered so badly that I was unable to recover. I had dissociated so completely I felt foolish, small, and incompetent, I didn’t want to make it worse by asking questions that were born out of fear, and convoluted by a stressed-out brain. 

Sitting in my car I messaged my family and informed them of what had happened. I felt like I had failed myself, that all my work was for nothing, and that as much as I tried I may never be able to mentally handle the twists and turns of this process. Over the next 24 hours, I spiraled in almost every way I had to spiral. I won’t get into all the lies that my brain told me, but there were many and some of them were quite creative. I knew I was out of reach of my tools, I wanted to feel better and I knew I could, so I reached out. I reached out to my family, I reached out to my therapist, and I talked about what happened and how I was feeling. Once I was more clear on why I was feeling how I was feeling, I could use my tools to cope with what had happened and why it was affecting me so greatly. And after processing, I was able to write a group of follow-up questions to send to my doctor for a second chance to better communicate with each other. 

In the end, there are a few things that are true about this appointment. The appointment didn’t go as I had planned. My doctors, as humans, were very likely in the middle of an off day, or a tough situation. While this shouldn’t have been an issue in my appointment, humans are going to humans and it ended up that way. Additionally, I learned a big lesson, this process is enormous and taxing, it is emotional and it is going to be triggering from time to time, it will be in my best interest to not attend appointments alone for this reason. This fact isn’t a comment on my character, it is just a fact about the situation. Finally, when a human having an off day, meets a human who is stretching her emotional limits, there will likely be misunderstandings and friction. One less-than-stellar appointment isn’t going to change the way I proceed. I still feel more comfortable here, with these doctors than I have felt with other doctors in the recent past. I believe that I am in the right place, to get the care I need, whatever that involves moving forward. While this was not my favorite appointment it is because it is so far from what I have come to expect from them. I have been in situations where this type of appointment was the norm, which is why I have been so thrilled with these doctors and this team. 

On a separate note, I would like to say this, your support and care dear reader are appreciated beyond measure. I want to share this process with you because in sharing with you, I am able to work through the process for myself, share with others in my same position, and record forever how this process felt. This said I need to make it very clear, no one, not one person on this earth is more invested in my health and well-being than me. I am and will continue to do whatever it takes to give myself the longest and most full life possible. This is not a post telling you I have doubts about my team. If I doubted my team, this post would be about ME looking for a new one. All of this is to say, please don’t tell me I need to change doctors, teams, and locations. That is a decision for me to make, and extra input from others, though I know meant well, only causes me more conflict than is needed. Should the moment ever come that I feel that a change is needed, I will do the research, and find the place that is most suited to my needs. I have done it before and if needed I will do it again.  I am after all a grown, capable human.

Scars

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When I was in elementary school, we had an indoor swimming pool. A few times a week our classes would get to put on our bathing suits in the middle of the school day and take swimming lessons from our PE teachers. I was never a particularly modest child, in fact it was all my mother could do to keep clothes on me as a little thing. I was forever standing in front of the television in my training pants making muscles for my family to see. I was comfortable with my body, and I really didn’t have any thoughts about the still pink scars that graced my chest. They were as much a part of me as my fingers or my toes. So when one day sitting on the edge of the school swimming pool a little boy in my class asked me what happened, gesturing to the scar on my chest, I froze, and after a million thoughts ran through my six year old head I told him, “I fell on an ax.” I could live another 100 years and still have no idea why those were the words that escaped my six year old lips, but they were. 

My relationship with my scars has always been complicated. I spent many post-bath moments observing my scars as a child, they were to me, the only thing I had as proof of the time I was told I spent as a baby fighting for my life. While everyone around me remembered that time, all I had were the scars. I spent a lot of time in my teens doing all I could to hide my scars, believing they were ugly and not wanting to show anyone what I thought of as a weakness. As the years have gone by I have come to feel pride in my scars. I still spend time observing them in the mirror, (clothes still aren’t my thing if I can help it) and thinking about where they came from and where they have gotten me. Many nights to this day I trace each bump and curve in the scar that sits center of my chest, until I fall asleep. 

It shouldn’t have surprised me then, how today I was suddenly overcome with sadness at the thought of the eventual reconfiguring of my scars. When the time comes for transplant the incision will be on top of my current scar. It will be larger, and likely much gnarlier than the scar that started on a one year old baby and grew with me over time. I have never minded new scars joining the others, but this one will change the topography completely. And while I have thought frequently about how many emotions are tied up in my actual heart and saying goodbye to it one day, I don’t look in the mirror and see my heart. My heart isn’t the outward reminder of why I am who I am and what I have been through. While it is true that I have never let my heart condition define me, it has certainly shaped me into who I am. So today I felt my feelings, first in my car, out of nowhere, then on my therapist’s couch, and later as I shed a few tears in front of the bedroom mirror. I have carried these scars since before I could remember. They have been the things that remind me that if I could do it as a tiny baby, I could do it as a teen, or an adult. I imagine there are more of these kinds of things that will come up as I sit here in the unknown. Minds wander as they wait and I have never been good at waiting. 

I am glad this all came up today, it gives me a chance to think about what I can do to come to terms with this change as much as I can now, so it won’t be as hard later. Until then I will continue to observe in awe of the landmarks of my life that adorn my chest. Each glossy white river of mended flesh a testament to the strength and perseverance of the me who came before today.

What now?

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Ten days have passed since my family and I had the first of what I now know will be many appointments with my new specialist. My biggest worry about the appointment was that having all of us present would be overkill, that this appointment wouldn’t be all I had made it to be in my mind and that I had “wasted” my family’s time and resources for nothing more than moral support. As it happens that was exactly why they came, and the fact that they needed to hear what I was going to be hearing as much as I did. As a family we love a plan, we are terrible at agreeing on one, but we really like to have one, and having this huge news and no real plan has not been going well for any of us. 

When we arrived at the appointment I was certain we would not all be allowed in the room together. Since Covid things like that have been out of sorts and I have felt lucky when one family member could be present, now with three I was pretty sure I would be going in at least one man down if not two. When the nurse came I turned on the charm and perhaps a bit of the guilt, she tried to tell us that only two people could come back (only two chairs) I assured her that one of them could stand and that we would be having a very important conversation about transplant, could she please let us all come back (eyelashes, eyelashes, puppy face). Thankfully she did not seem to be too bothered by this request and was mostly worried about one of my sisters not having a chair. No worries, there was a very low, chair height counter in the room, Aimee would just sit there. Easy peasy. 

Sat there in the room, the three of them lined against the wall, our questions planned, (they really boiled down to, “what’s your whole deal?”) we waited. My mom, obviously nervous but keeping it together, had been in so many rooms like this one with me over the last 40 years all leading to this one. I wouldn’t dare think I could possibly know what she was thinking. She keeps the memories that I can’t reach, the ones I was too small to remember, she is my living diary of all that has happened, and has always been told what may come, that this day may come. I know that it was a bit overwhelming for her, for us all, and that is why I was glad we were all there. My sword and shield sat beside her. Rachel, my sword, ever ready to fight for me, through red tape, against bad plans, for more data and facts, her only intention – keep me safe. I give her a hard time sometimes about her questions and her protectiveness but I wouldn’t be able to do what I do without her always ready to back me up. Aimee, my shield, prepared to take over the listening duties and allow me a moment to compose myself if needed, ready to provide a reprieve from any tension. She finds ways to make sure if I need a moment, I get one, she is the one who always reminds me that this is my show, and we do what I say, even the doctors. We make a good team, the three of us. 

My appointment went well, we all really liked my doctor. I really liked my doctor which is important when you are talking about the person that you are trusting your actual life to. He was kind and talked us through each step of what comes next. He answered questions and spent nearly a full hour with us. He laughed with us, and he was real with us. This isn’t an easy place to be in and it comes down to this – what happens next, and when it happens, is largely up to me. We are going to try a few things to get me feeling better in the present, see if there is any way that what we are doing with a couple new meds makes me feel good enough to hold off on listing for a while longer.

He and my team are going to follow up with me constantly and keep a close watch on the progression of my heart failure. It will end up that I will be seeing someone on my team about every 1.5 months. And, if there comes a time that they see something that moves us along, that is what we will do. Also, and I feel just as if not more importantly, if I report to them that I simply do not feel well enough to keep trying new things, we stop, right then, and on my call and we take the next step. No one wants me to have nothing left to give when I am listed. In fact, he wants me to be in better shape than I am if at all possible, he wants me to be able to bounce back as quickly as I can and being in better shape is the way to do that. 

So, that is where I am at. My therapist asked me what would make me delay making the call, and what would cause me to make the call. It comes down to this. Currently, I have just enough in me to make it through an average day with no crazy variables, and nothing more. My quality of life isn’t super great. I miss the things I could do even a year ago. I couldn’t make it through a concert now if you paid me. If I can get to a point where I consistently feel 10-15% better than I do right now, I might be able to wait. If I can get back to even a few of the things I was able to do before, I might be able to wait, but if I stay the same or progress at all, it is time. It is time to get my life back. I am ready to be on the other side of this, I am ready to know what comes after this. What comes when I have a heart that can keep up with all I want to do in life? Whether that is in 3 months or in 3 years, I am optimistic and excited for what that future looks like.

Front of a card my sister Aimee sent me. Artist : Jennifer Durand

My People : Part 1

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One of the lessons that was hardest for me to get in therapy, was that there is good in all situations. This is a hard thing to believe for someone who has lived a life that has had more than its share of trauma and hard times. It is hard for a brain with C-PTSD to look at the hardest parts of their life and think, “That was bad, but hey, silver lining!”.

I didn’t see things like building resilience as an upside to the things I had been through. I thought I would rather have no resilience and an easier path. For a very long time I had a horrible time accepting the compassion and empathy of others. Receiving those things made me feel like people felt entitled to more of me than I wanted to give them, I thought that they simply felt bad for me, the “poor little sick girl”. I hated to feel pitied or worse and for lack of a better term like inspiration porn. I had many lessons early on  that taught me to be leery of people who did not know me well, yet were overly interested in the circumstances of my life (thanks dad!). I had to unlearn what I thought I knew and come to terms with what was more likely –  most people are compassionate and genuine with no strings. 

This week I was given what felt like my final exam on this exact subject. Could I accept true kindness and compassion without feeling like I was being pitied, or portrayed as a victim of my own life circumstances? 

Before I get into my final exam I need to adequately describe how uncomfortable displays of solidarity, compassion and generosity previously made me. Perhaps uncomfortable is the wrong word, let’s try blindingly angry, yes I think that fits better. Previously when I was on the receiving end of acts of kindness, and generosity due to my medical condition I would enter my therapists office fuming, raging, mad. I felt like I was in a Catch 22. I needed people to know about what was going on with me in order to be safe in case something went wrong, and to be understood when I needed time off to deal with it. I could literally not fathom that a side effect of people knowing my situation would result in genuine concern and desire to help. When those things happened because I surround myself with good people, I wanted  to crawl out of my skin and into a dark little hole. I didn’t want to be seen anymore. I felt like I had revealed too much. Like the Wizard of Oz, they had seen behind the curtain and knew that I wasn’t great and powerful, after all, I was in fact just a human, doing her best. At the same time I was angry to have people’s empathy which I mistook for pity, I also felt incredibly guilty for people having any feelings towards me at all. I felt like I had gotten “too close” to people, because I wanted to minimize fall out if something awful did happen to me. I felt unworthy of the love and kindness I was shown. (Have I mentioned that I have been to a lot of therapy and am doing much better now?) 

I am incredibly lucky to have worked in a phenomenal school, with amazing people for the last 15 years. I have worked with most of my closest co-workers for that whole time. Having people I am familiar with and are familiar with me has been an incredible blessing over the years where my health is concerned. They have always had my back and made it as easy as it can possibly be for me to take the time I need to deal with my health. I have not always been the best at receiving that kind of support, but they have always taken awkwardness in stride. Earlier this week they truly outdid themselves.

I arrived at school wearing a tie-dye shirt, super typical for me. I was amused and delighted that many of my friends and co-workers coincidentally were also wearing tie-dye. How crazy! I commented over and over. I am rambling on about the amazing coincidence of all the tie-dye and rainbow colors everyone is wearing when my co-worker fesses up and says to me “We did this for you.” I thought she was joking and I laughed, “Yeah you guys planned to be a rainbow for me.” Everyone else in the room nods their heads and confirms that yes indeed they planned this for me. In fact they tell me the whole staff is wearing tie-dye and rainbows for me and by the way I’ve just been Venmoed an incredibly generous amount of money the school raised for me last week. The only coincidence happening here was that I decided to wear tie-dye  too. Amazingly no one hinted I should and no one told me. My therapist would call this a synchronicity, an outward sign that we attract what we need in our lives. I am beyond thankful to have attracted these much needed people into my life.

The donations were extremely kind and generous but I have to say walking around and seeing my coworkers (many I don’t know that well) dressed in tie-dye for little ol’ me? It was an incredible sight. It was just amazing to have a visual of all the people in my corner, just in this one place, this one building, altogether about 50 co-workers were dressed in tie-dye, it blew my mind. All of this, and not one time did a single one of those pesky thoughts that I have had in the past about being seen as weak, or someone to be pitied. No worry about what knowledge or access others may feel they were entitled to, and no feeling unworthy of the demonstration of love and kindness was in sight. I did it. I passed this final exam. Never (yes never) before have I been able to receive this kind of expression of solidarity and love without later feeling overwhelmed by those negative thoughts and feelings. 

I am so thankful for all the people in my life who have been so kind and supportive of me. I have such a vast and diverse network of people who I love and who love me. I am not quite sure what I have done to deserve them all. I haven’t even gotten to the hard part yet and my people have shown up, from every part of my life, in every way I could ask for. 

Aunt Mo

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The summer of 2007 was a very strange and difficult time of my life – my early twenties. I had recently turned 25, lost my long term job that I loved but was killing me, and had met a friend with a heart like mine, only to lose him a few months later when that heart suddenly failed him. I spent a long time on my couch feeling sorry for myself, a really long time. My best friend and roommate would go to work, leaving me in my pajamas on the couch and come home 12 hours later to discover me in the exact same place. It wasn’t my best moment. To say I was floundering would be kind, I think some may have even called this my personal quarter life crisis. 

Enter stage right a wild haired baby boy, who would give me the name that I wear with most pride, Aunt Mo. I don’t want to overstate the importance of this little man’s birth, but it is pretty easy to say that his arrival was the catalyst for a lot of change in my life. There was this moment after my nephew was born that due to a series of unfortunate events, he and I ended up in a hallway together. My sister, her husband, our mother and a nurse were all in the new hospital room where the new party of three had been moved because of construction noise and somehow this left my hours-old nephew and I alone together for the first time. He was wide awake, and taking in the world around him, tufts of unruly hair peeking out from underneath his tiny hat. He smacked his mouth, made little squeaks, and waved his arms around. He was so small, and his eyes so wide. That moment has always felt very important to me. At that moment I knew two things, I wanted to be around this tiny human as much as my sister would let me, and that in order to be around this tiny human I was going to have to get my poop in a group. Depending who you ask, that is what I did, at least comparatively. 

This is all to tell you that,  of all the things I am, being his, and his cousins (and that previously mentioned  roommate/best friends two boys) Aunt Mo is my absolute favorite thing to be. It changed my make-up and truly the course of my life. Suddenly it wasn’t just about me, I had this little dude who lit up every time I showed up at his house, who reached for me when other people were holding him, who learned my name quickly after mama and dada. I spent a lot of my teens and twenties fighting against my health challenges, avoiding the doctor as much as I could, not taking my meds how I should be, living my life in less than healthy ways. I had a live fast die young kind of attitude. I really didn’t believe I would be around that long, so I didn’t do a whole lot to help myself out, until my nephew came along. He made me want to try the next thing, the new med, the next fix. Where I was once bitter and angry, I was optimistic and hoping for any solution that meant I got as much time as I could possibly have with this little dude that showed up one September afternoon and completely turned my world upside down. 

I write this all because I think it is an important piece in the puzzle of how I ended up here, a week away from seriously discussing heart transplant, and honestly not being very fearful. I was, for sure. That was the shock, and in some ways I suppose there is still some fear mixed in there, but more than anything I am excited. Everything I have said yes to over the last 15 years has been about having more years with my nephews. From the pacemakers, to the ICD, every heart cath, stent ballooning, ER trip, device shock, every test, every blood draw, every new medication, and every side effect has been in the pursuit of more time. More time for me yes, but in the beginning and still most largely for him, that crazy haired baby in the hallway that I knew I wanted to see grow into a man. And for the twin boys who came two years after him, who are my soul’s own twin, and my brilliant and delightful opposite. 

I know they are apprehensive about what is to come for me. It is only fair that they would be. I can’t promise them that everything will go exactly as I plan for it to go, but I have every intention of everything going right. I expect to be there when they graduate, get jobs, move away, try to lose touch and fail because I am an annoying and clingy aunt. I plan to be there as they become fully functional people. I hope one day, one of them has a house big enough for old Aunt Mo, to move in with her ancient Corgi and too many books. 

I am so proud of who they are. I am so thankful that they, as much as they can, understand that sometimes I need to borrow their moms, my sisters, because we are an important team. I hope that one day they feel as much a part of that team as I feel like they are. They are the best part of the team, the light part, the part that brings the joy and the laughs when everything else is too serious. I hope they know that their Aunt Mo loves them so much, that she learned to love herself too. I hope that they can be brave with me as we walk this road together. I hope they know that it is okay if we can’t always be brave, and it is okay to be scared, because even the scariest things aren’t that scary when you are on our team, and I am on their team always. I hope they know that more than anything else in the world, I am so glad to be their Aunt Mo and I plan to be there for them for a very long time.

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.