What I've been up to of late.

A few of my latest drawings. They're done with fine tipped pens on paper and you can see all of them on my Facebook page at Open Heart Art,

https://www.facebook.com/openheartdoodling?mibextid=9R9pXO

I draw mandalas as a kind of spiritual practice and because I find it calming. Spending time being creative helps to regulate my nervous system. It also gives me a sense of accomplishment.

 

 

I made it to 50!!!

I recently turned 50 and it's kind of a big deal. Really didn't think I'd live to see my 50th birthday. I have fought all my life, over and over, just to have more time. Time to accomplish things, time to spend with loved ones, and time to experience the best of what this body in this life can give me. This is a major milestone for me and I thought long and hard about what I'd like to say here, but I kept coming back to this post I wrote on Facebook a couple of years ago after the death of one of my Zipper Sisters.

Yesterday was difficult for the Zipper Sisters. Being a member of this group means a great deal to me, but it is really painful when we lose someone, and it happens all too often. All gone way too soon. We miss them and feel sad for their families, but those of us with complex defects who are getting up in age also feel fear. Personally, I often feel that I am living on borrowed time and that the heart in my chest is a ticking timebomb. Many of us know that we will get sicker again and need more surgeries. That becomes harder and harder to face as we age. Sometimes I feel guilty that I have lived so much longer than expected while other CHDers died young, but above all else, I feel that having a complex congenital heart defect has taught me how precious our time here is. I want as much time with the people I love as possible and I will keep fighting tooth and nail for every minute, for as long as I can. CHD has taught me to love with my whole heart and that who I love, and how I choose to live, doesn't have to make sense to anyone else. My life has not been conventional AND THAT'S OK! I don't have to justify my choices to anyone. I live with a constant ticking in my chest, if you stand close enough to me in a quiet room you can hear it. It makes me want to squeeze as much joy and love out of this life as I can. EVERY SINGLE DAY. So yeah, live and love as big and as much and as deeply as possible, folks. I love you all.

To sum it up, I am feeling the urgency of time slipping away more acutely than ever before and I am determined to get the most I can out of this body. 

"Tell me, what is it you plan to do with your one wild and precious life?"

- Mary Oliver

            

Happy CHD Awareness Week! Scars are Beautiful, I'm not Broken, and I Still Have Some Fight Left in Me.

CHD Awareness Week has rolled around again and I can't help but think about the CHDers we have lost in the last year.  I know that, as a 47 year old with Truncus Arteriosus Type 2, I am very lucky to still be here. My heart is currently stable with two mild to moderately leaky valves and some permanent damage and I feel that I am currently enjoying a window of surgery free, arrhythmia free, relatively active years. Things are bound to change in the future and most likely not for the better.

A few months ago I attended an ACHA NorCal Regional Conference in Berkeley and learned about Palliative Care, which should not to be confused with Hospice Care.  Dr. Meadows referred me to a Supportive Care team at Kaiser South Sacramento and I got to sit down with a LCSW, MD, and RN to discuss my challenges and brainstorm about possible solutions or support.  We touched on the issue of pacing and my ongoing struggle with it.  I have never been good at pacing myself.  I generally keep going, often aided by caffeine, until my body and my brain start to shut down from sheer exhaustion.  In the past I have felt frustrated with my inability to pace myself, mainly because I thought that I was failing at something that I've been taught to be essential for good self-care when living with chronic illness.  Upon further reflection I realized that my reason for being resistant to the idea of pacing was worth exploring and it dawned on me that pressure to pace myself felt like pressure to change who I am at a deeply personal level.  I have always been passionate and determined to get as much out of life as possible, pushing myself is very ingrained and few things feel as good to me as getting shit done or being out in the world exploring new places.  I often push myself hard for a few days and then spend several days recovering afterwards, unable to do much more than sleep and rest.  The LCSW on the Supportive Care team suggested that I think about what the pay off is for this way of coping and whether it was worth it to me to continue as before, or whether it's really something I would like to change.

Change seems to be in the air so far this year and I am discovering a new understanding and appreciation of my coping mechanisms.  All in all I feel that I have done remarkably well at taking care of my high maintenance body and battle weary mind.  While I feel comfortable making a few smallish changes I have decided that I am not willing to try and overhaul my entire coping style. I have cut way back on coffee and am now drinking only green tea most days.  I'm also making time for knitting and other relaxing pastimes. I've managed to lose 10lbs by eating out less and cooking more, and walking around on campus 4 days a week instead of the 2 days a week from last semester.
Most importantly, I have worked on my personal relationships and taken steps to change things that were no longer working for me or making me happy.  Our time here is precious and I wanted more passion, adventure and stimulation in my life. I want to feel alive. I want to love my life. This is still possible for people who live with CHD and other chronic health problems.  We have to work around our limitations but the effort it takes to do so is well spent.

So get out there and live big beautiful passionate lives, people! Don't let your CHD hold you back all the time, I know that it's inevitable a lot of the time and that our version of a big beautiful life won't necessarily look the same as a healthy person's idea of a big life, but we can find ways to do some of the things we're passionate about.  Let's love these crazy lives of ours, come what may. Happy 2019 and happy CHD Awareness Week to you all!

My, how things have changed! Advocacy, inspiration porn, and the joys of being a Zipper Sister.

Leticia Mirelez-Wong and I, at Sutter Medical Center of Sacramento, a few hours before her recent cardiac catheterization. 

A few years ago I attended my first ACHA (Adult Congenital Heart Association) conference and it truly changed my life.  Back when I had my first open-heart surgery, in 1975 at age 4, things were drastically different in many ways, but what struck me most of all is how connected CHDers, and parents of CHDers, have become.  Back in the early seventies there was no internet and no actual in-person support groups of any kind.  In those days "Heart Parents" found themselves in uncharted waters and kids with complex CHDs were way less likely to survive infancy.  My experience of being in the hospital and having surgery was also drastically different than that of kids today.  At the Red Cross Children's Hospital in Cape Town there were no Disney princesses visiting, no Spider-Man cleaning the windows, no capes, no music room, and not even any murals of cute animals to cheer up the sick kids.  My parents did not celebrate my life as some kind of miracle and I was not taught to think of myself as strong, let alone a warrior.  Throughout the rest of my childhood my heart condition was rarely mentioned, and while I was always considered strong-willed it was seen more as a problem than anything else.  I had behavioral issues, probably related to PTSD, and slid right into the "black sheep" position in my family.  Having a CHD was an altogether isolating experience for me.  I didn't meet another young person with a CHD 'til I was 13.

Fast forward to today and things are drastically different.  There are blogs, websites, group pages, in-person support groups, conferences, t-shirts, memes, and camps for kids with CHD.  Connecting with others who have complex CHDs, and even Truncus Arteriosus specifically, has become easy to do!  Initially, I joined a Facebook group for people living with CHF (Congestive Heart Failure), but quickly realized that my experience was very different from that of folks who developed heart disease as adults.  Luckily there were a few CHDers in that group, and one of them lived just blocks away from me in Midtown, Sacramento!  I reached out to Leticia Mirelez-Wong and we met for pizza.  We have been friends and sisters from that day on.  Since meeting Tiece I attended the ACHA conference and learned about a Facebook group for women with CHDs called the Zipper Sisters.  Tiece and I both joined and I am happy to say that I now have a great many sisters who truly understand what  life with a CHD is like.  I have developed close friendships with several of my Zipper Sisters and I love that I can always turn to them for advice, commiseration, and that feeling of belonging that I lacked growing up.  

While I have clearly benefitted greatly from the connections I've made with other CHDers, from participating in CHD culture, from learning more about my CHD, and from spreading awareness about CHDs, there is also potentially a darker side to some of that.  I took a Health Psychology class this last semester and learned about "inspiration porn".  I had never heard the term before, but I have experienced having my disability used by a "friend" as inspiration porn, or a way for her to get attention and play the martyr.  She liked the idea of having a friend with a disability, and telling everyone about my CHD, but when it came to actual hands-on support she quickly jumped on an excuse to bail.  There are many problems with objectifying people with disabilities and using them to guilt trip abled people into working harder.  One of these is the fact that it puts us in a tiny box and pressures us into behaving in some way that others could find inspirational.  On the toughest days of dealing with the surgeries, chronic pain, exhaustion, and traumas that are often a part of our lives with CHD, it is impossible to always carry ourselves with grace and perfect composure.  We should not be expected to do so in order to fulfill someone else's idea of how we should be coping.  I feel that this is important to keep in mind as I engage with other CHDers and participate in educating the wider world about CHD. 

Overall, connecting with other CHDers has been overwhelmingly positive, and speaking out about CHDs has become important to me as well.  Avoiding the pitfalls of inspiration porn while advocating for people with CHDs could only make me a better spokesperson and a better support person for my fellow Zipper Sisters.  We are truly stronger together and being a part of this community has helped me grow in many unforeseen ways.  I am deeply grateful.

My life is a miracle of modern medicine and I am deeply grateful.

"Soul work is not a high road. It's a deep fall into an unforgiving darkness that won't let you go until you find the song that sings you home."

"Ring the bells that still can ring, forget your perfect offering, there is a crack in everything, that's how the light gets in."

-Leonard Cohen.

For several months now I have been making yet another attempt at finding effective treatment for the Chronic PTSD I've lived with for most of my life. Medical trauma has been responsible for the bulk of my issues, but I also grew up in a family where there was physical and emotional abuse, neglect, and mental illness.  Over the years I have spent countless hours in traditional talk therapy, I've done art therapy, group therapy, EMDR, and am currently trying CBT. I have found art therapy and group therapy very helpful, but was quickly overwhelmed by EMDR. Talk therapy has been a mixed bag, some helpful, some a waste of time and money. I have also intermittently worked at completing a BA in Psychology and have read many books about trauma and mental illness. Despite all these efforts my symptoms have slowly worsened over the years, most likely due to the repeated trauma of ongoing surgeries and other painful procedures. I have given up on the hope of finding some amazing cure for my PTSD and am learning to see it as a part of me. I can't go back in time to change my childhood and I can't trade my body in for a healthy one. Living with things the way they are is a struggle much of the time, but not all of the time. There are things to be grateful for, and practicing gratitude has enabled me to see more and more of those things. Using a different lens to look back at my life helps me see that there were many good times, that I've had amazing opportunities, and overall, that I've had a remarkable life.

It has been far from perfect and there has been a great deal of suffering, but that is just a part of my story. No more and no less. I have lived through some very dark times and spent many years holding on to the bitterness and anger I felt towards my family, but what I eventually realized is that the anger was hurting me more than them, and that they were back then, and are still now, mentally ill. Therefore, I can continue to challenge myself to feel compassion for them, just as I would for any other mentally ill individual. That doesn't mean that I have to have any of them in my life, but I can send them compassion from afar and if I do choose to have any interactions with any of them I can approach those situations with compassion and firm boundaries.

Developing compassion and kindness for my self has been even more of a challenge. I have come to realize that I've thought of myself as broken for as long as I can remember. Certainly, my parents are partially to blame, but I have perpetuated the fallacy. It has made perfect sense to me to think of myself as emotionally and physically broken. I am trying to change that by applying a subtle shift to my perception, and by altering my value system. Learning to see the value in my situation, my body, and ultimately my self. Just because something, or someone, isn't perfect doesn't mean that they, or it, is necessarily worth less. This probably seems obvious to most people. In contrast to that, I was raised in a family where everything and everyone was either good or bad, black or white, and worthy or not worthy. I have since learned that the world, and everyone in it, is filled with gray. Uncertainties abound and things can sometimes be what we choose to make them. It is quite possible that having a screwed up family and being born with a heart defect has made me a better person, not perfect but stronger in some ways and smarter in some ways. Imperfect can be beautiful and I am just as worthy as anyone else.

So yes, CBT is possibly subtly changing the way I think. I will probably never be a "glass half full" kind of person, but that's ok. I don't need to change or "fix" everything about myself. Acceptance is a beautiful thing and it can open the door for gratitude. Despite all the shitty challenges, there are a great many reasons for me to love my life.

If you are struggling with PTSD, please do keep looking for something that helps to lessen the symptoms, and that can make you more comfortable in your own skin. Different things work for different people. You are worth the effort.

New Henna Heart.

Congenital Heart Defect Awareness.

It's CHD Awareness Week and I would like to share a video made by one of my Zipper Sisters. I am in this video, along with many brave and amazing women who were also born with Congenital Heart Defects. If there is one thing I would like to teach people about CHD it is that it's a lifelong battle. We are never "all fixed". Many of us have to endure repeated open heart surgeries and other invasive procedures over and over, all our lives, and the damage to our hearts from scar tissue and other complications is irreversible. There is no cure, no magic pill, and no end to the struggle, even for those of us who go through heart transplants. All we can do is attempt to make the best of the lives we have been given, with as much love and courage as we can muster, everyday.

https://youtu.be/5veYTUYiTr8