Category: Mental Health

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. 

Straightening My Cape

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Tomorrow it will be two weeks since the news that is heart transplant barreled in to my life and brain with less ceremony than a Mack truck. The first week I was pretty numb, I spent a few days laying in my bed, on my couch, and on the floor of various rooms of my apartment just kind of zoning out. I wasn’t even really thinking about the news. I wasn’t really thinking at all. If my mind was a house, nobody was home. When feelings did come back, they did not take their time. I haven’t had a lot of practice catching grand pianos falling from the sky, which may be why I didn’t handle ALL THE FEELINGS very well when they came, they weren’t light or easy to hold on to. They came fast, zero to sixty, and they couldn’t seem to take turns. Anger, and sadness teamed up and caused the bizarre, dark kind of amusement that makes people laugh at funerals. Then I would think I had pulled myself together only to find myself completely defeated again. I felt more than a little unhinged.

Once the feelings were back the flashbacks and panic attacks arrived as well. It should come as no surprise to anyone, that (largely due to my medical background) I have a long and well documented history of PTSD. The way I have explained it is this – over the last several years of trauma informed therapy I have moved my tolerance for triggers further and further from the edge, it takes larger or more frequent triggers to really cause much of a disturbance. Something may knock me back a little but I am not very close to the edge so my emotions generally stay in check. This doctors appointment punted me back to within striking distance of the edge, and every physical symptom I have started causing tremendous distress and panic.

One night, as I was falling asleep, something about how quickly I was drifting off scared me and I shot awake and into a panic attack because to me it felt too similar to how it feels to drift under anesthetic. I was terrified. I did not want to go to sleep, lose time, wake up confused and in pain. It took me an hour to use my tools and convince myself that I was safe and that I was just going to sleep for the night not having surgery. You would think this is obvious but you would be wrong, you cannot reason with a panicked brain.

Things are improving. I will be moving to twice a week therapy for a while to get these triggers under control. I am communicating my feelings to the best of my ability and giving myself both permission to feel things and permission to take some time off from my hyper-vigilance.

Soon I will have a heart cath, and meet with the Advanced Heart Failure and Transplant team. My team, my mom and sisters will be with me. I am so thankful to have them and that they have worked to understand as much as they can about how I process things and not rush or push. I have done really great changing some eating habits and watching my water intake and retention. There are good things among the hard stuff. I am back at work and for the most part I am able to do what I have always done with a few tweaks and accommodations here and there. I am thankful for the kindness and understanding of my friends and co-workers. I am going to do my best to keep posting here, both for myself and for all of you who wish to follow along. This could be a very long road. I’m straightening my cape. It doesn’t make me super human or anything, but man does it make an outfit pop!

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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