CHD, PTSD and the Holidays.

"Q: Bury deep, Pile on stones, Yet I will dig up the bones. What am I?

                           A: Memories."

                                                                                       -A Folk Riddle.

 

I have a love/hate relationship with the holidays. Always have. Many of my memories of Christmases spent at home with my family as a child are not happy ones.  Navigating my way through this time of year has always been challenging for me and as my health declined it has only become increasingly so. I struggle physically to keep up with the festivities, but the emotional hardships I inevitably face each year have proven to be even more taxing. The grip that chronic PTSD has on my mind is as great or greater than the limitations CHD and Fibromyalgia have placed on my body.

Living with limitations is not new to me and you'd think I'd be better at it by now, but I still strongly dislike having to pace myself. Whether I pace myself or not, my body will only let me do so much. Sooner or later I end up crashing and have to bow out of activities in order to drag myself to bed for a nap or to the quiet of my tiny sky box apartment for restorative alone time. I have mostly accepted this as my current way of life, but I still end up feeling somewhat left out now and then. That's when the sadness sets in.

Feeling sad and isolated is a common experience for survivors of trauma. We often feel that we are on the outside looking in. PTSD leaves us with a lessened ability to feel meaningful connection with others, experience deep joy, or to simply feel that we belong. I have lived through a great deal of trauma due to a lot of painful experiences in hospitals and domestic violence in my family of origin. Both of my parents struggled with mental illness and were ill equipped to care for a very sick child. I have vivid memories of being alone in the hospital around the time of my first open-heart surgery, at age 4, and feeling a loneliness that was so devastating to me, as a small child, that I have difficulty describing it. My mother had been told by my doctors that I most likely wasn't going to make it and, since she seemed to be having some kind of nervous breakdown, that it would be better if she simply stayed away. I was alone so much of the time that I rocked myself back and forth for hours, matting my hair, in an attempt to self-soothe. I learned very early on that I couldn't rely on my parents for emotional support. I also learned to numb out, to turn my feelings off, when the world around me became too awful, scary, or hard to understand. Both of my parents attempted suicide during my childhood and I also witnessed physical abuse at home. I had to numb myself or use dark humor to get through those years.  It's a coping strategy that has both helped and hindered my emotional health.

I feel amazed by the fact that I turned out as ok, mentally and emotionally, as I have. Truth be told, I have worked hard at it, spending years in therapy and making a commitment to be as honest with myself and others as possible. Despite the work I've done to recover from trauma I am still a "glass half empty" kind of person. I never feel completely safe, I worry a lot, I often have upsetting nightmares, I replay images and conversations from the past in my head on a daily basis, I question and second guess myself constantly and I sometimes struggle with intimacy. These things are a part of who I am. The traumatic memories haven't faded much over the years, so I carry them around in my head and every time I catch myself replaying or reliving some bad memory I simply remind myself to let it go, a million times over, let it go.

Unfortunately, during the holidays it becomes harder to keep those sad memories at bay or to let them go. I haven't seen either of my parents in 16 years and I haven't heard from my brother in many years either. Our family fractured a long time ago and it has been better for my mental and physical health to maintain that distance. I cherish the time I get to spend with my son this time of year and I often attend holiday celebrations with my ex husbands family, who have always welcomed me with open arms and who I do love dearly. Despite my efforts to participate and enjoy the holiday season, I always breathe a sigh of relief on Jan 2nd.

So, this Jan 2nd I will yet again feel relieved that I made it through another year and also deeply grateful for the people in my life who love me, despite my somewhat thorny nature. To all my fellow CHDers and anyone else who might be living with PTSD, I would just like to add that the sooner you seek treatment the better. Having lived with chronic PTSD for 40 years has changed who I am and I sometimes wonder who I would have turned out to be if I had been treated for it at a much younger age. Get help as soon as you can, but also remember that you're not alone and that you are worthy, lovable and amazing, just as you are. Best wishes for a warm and magical holiday season.

 

 

Why creative endeavors are so important to me.

Due to my health problems I had to reconcile myself with a smaller and quieter life than I would have liked. Through it all I have often fallen back on my love of art to help me cope and pass the time. Art and crafting has given me a much needed sense of accomplishment, reduced my stress level, and made me a part of the world wide community of henna artists. Expressing myself creatively has become an integral part of my journey with CHD and Fibromyalgia.
I have been drawing, painting, hennaing, or otherwise crafting, for as long as I can remember. My love affair with mandalas began when I was 16. I remember the first mandala I drew. It was the summer after I first came to America and I didn't have any friends to hang out with, so I spent all my time reading and drawing. I wanted to draw something with a great deal of detail, in order to pass the time, and stumbled onto circular designs that seemed to draw the eye inwards. I have been drawing or hennaing mandalas ever since. They hold a special place in my heart. Carl Jung once said that mandalas symbolize "a safe refuge of inner reconciliation and wholeness." This definitely rings true for me. When I draw or henna mandalas I can sense my mind relaxing and my thought patterns changing. It is a way for me to reach into a calmer place somewhere inside. Accessing that calm is something I'm always drawn back to and I rarely go more than a few weeks without hennaing, painting rocks, making cards or simply doodling.
Of all the mediums I've worked with I love henna the most. Hennaing on skin has helped me be more social and make connections with fellow artists. When one is living with chronic illness it becomes challenging to maintain friendships, let alone make new friends, but the social nature of hennaing has helped me combat the isolation that can result from being chronically ill. When I am too sick and tired to be around people I decorate wooden boxes with designs done in henna, colored pencils, and glitter gel. It makes me happy to have something to show for my time.
Aside from passing the time, reducing stress, improving my social life, and giving me a sense of accomplishment, making art and crafting has also helped me silence, or at least turn the volume down on, my inner critic. Perfectionism can kill creativity and learning to enjoy making something, even if it's far from perfect, has made me a happier person. That may be the biggest benefit of nurturing our own creativity. My advice to anyone living with chronic illness is to make stuff. Play with art supplies. Color, draw, finger paint, whatever makes you happy. Creativity is always worth the time and effort.

Henna hearts.

It's been four years since my third open-heart surgery.

On this day, four years ago, I spent 11 hours on the operating table undergoing my third open-heart surgery at the Kaiser hospital in San Francisco. During the last 4 years I have endured many setbacks and been tested in every way. It seems that the older I get, and with each subsequent surgery, recovery becomes increasingly challenging and elusive. I have never had to work so hard for anything before. While my body will never completely recover, my goal has been to regain some joy and usefulness. I hope to do more than just survive from one surgery to the next. I want to rebuild a life that is worth living.
During this surgery, Dr. Anthony Azakie replaced my aortic and pulmonary valves, and repaired my tricuspid valve. That was done in 6 hours, but it took an additional 5 hours to stop the bleeding. Since then I have had 2 cardiac catheterizations done, been cardioverted 8 times, had a complete hysterectomy and underwent a procedure to repair a pseudo-aneurism of my femoral artery. I have also suffered from anxiety and depression and lived with chronic pain, due to a worsening of my Fibromyalgia symptoms and nerve damage sustained during surgery. Following all of that, I have spent the last 7 months weaning myself off of pain medication. Progress has been slow and painful, but the experience has taught me a great deal.
The last 4 years have taught me the importance of having hope, even if it's just a glimmer. I have also learned who I can count on and to what degree. I have had to develop some faith in my own strength. All of this came at a very high price but has made me a more substantial person. I'm thankful for that and for any and all improvements to my health and wellbeing. I intend to make it count.

Second open-heart surgery at 24.

Here is another article written in Afrikaans and printed in Die Beeld, a South African newspaper, shortly after my second open-heart surgery, in 1995.

Ná 20jaar raak vark se hartklep eers onklaar. Barbara Steynberg en Helena Schutte
(After 20 years, pig's heart valve starts to fail.) 

ILLUSTRASIE:foto: Christopher Ruddick en Marijani Fourie op hul troudag in San Diego. Marijani het twintig jaar gelede 'n unieke hartoperasie in die Rooi Kruis-Kinderhospitaal in Kaapstad ondergaan waarin 'n hartklep van 'n vark in haar oorgeplant is deur die bekende hartchirurg dr. Chris Barnard. Dié varkklep is verlede week ná twintig jaar vervang deur 'n kunsmatige klep.

SELFS die Amerikaners was verbaas om te hoor 'n klein otjie kon 'n
mens se hart só warm en lank laat klop.
Só goed het dit gegaan met die vierjarige meisie van Port Elizabeth
in wie dr. Chris Barnard in 1975 'n hartklep van 'n vark oorgeplant
het, dat sy ná twintig jaar steeds ''spekvet en gesond '' is.
Eers nou het Marijani Fourie (24) van San Diego in Amerika 'n
operasie ondergaan om die varkhartklep te vervang deur 'n kunsmatige
klep nadat die eerste een begin verkalk het. Die operasie is verlede
week in die mediese sentrum aan die Universiteit van Kalifornië
gedoen.
Marijani is oorspronklik van Suid-Afrika, maar woon reeds agt jaar
saam met haar ma Delina en Andries, haar broer, in Amerika.
Marijani het van haar huis in Amerika gesê sy sterk nou goed aan ná
die operasie van vier uur. ''Ek kan nou nie in die Olimpiese Spele
hardloop nie, maar kan darem 'n normale lewe lei.''
Dr. Jolene Kriett, haar chirurg, het gesê sy is verstom oor dr.
Barnard se tegniek en kan nie glo die varkklep het so lank gehou
nie, het Marijani gesê.
Marijani het 'n aangebore hartdefek. Die hartwand tussen die
onderste twee kamers van haar hart het 'n groot gat gehad sodat dié
twee kamers nie behoorlik van mekaar geskei was nie. Met haar eerste
operasie op vierjarige ouderdom is die probleem uitgeskakel. In die
proses is 'n hartklep van 'n vark gebruik.
Die operasie het destyds groot opspraak in die mediese wêreld gewek
vanweë die uniekheid daarvan.
Ná twintig jaar het dié klep verkalk en was 'n tweede oorplanting
nodig.
Marijani sê dokters het haar gewaarsku dat sy nie kinders sou kon
hê nie, maar vertel sommer dadelik trots van haar woelwater
seuntjie, Clave (3), wat in die kleuterskool is. Sy is getroud met
Christopher Ruddick, 'n marinier.
Mnr. Jan Fourie van Johannesburg, haar pa, sê hy en sy vrou
Almari sien uit daarna om later vanjaar vir Marijani en haar gesin
te gaan kuier.

---

It basically says that I underwent my second open-heart surgery at the age of 24, at UC San Diego. My surgeon was Dr. Jolene Kriett, who is quoted as saying that she was amazed by Dr. Barnard's technique and could hardly believe that my pig's valve lasted for 20 years.

My second heart surgery only took 4 hours and the recovery seemed easier than expected. After 6 weeks I was taking care of my 3 year old, had moved back to Sacramento, and was exercising. Unfortunately, things took a turn a couple of months later when I became increasingly fatigued. I also developed a lot of strange and unexplained symptoms such as vertigo, joint pain, unrefreshing sleep, indigestion/nausea, sensitivity to light and sound, and brain fog. I was eventually diagnosed with Chronic Fatigue Syndrome and later with Fibromyalgia. I had hoped to lead a productive life after my second open-heart surgery, to go to college full-time, pursue a career and care for my son. Sadly, things didn't turn out that way and I was forced to scale down my plans considerably. Accepting my new normal was very challenging. Pacing has never been my strong suit, but I had to accept that it's a lesson I need to learn. Finding a balance between pushing myself to accomplish things and accepting my limitations is something I am still working on, to this day.

My early heart history.

This is an article that was printed in a South African newspaper regarding my surgery. It's written in Afrikaans and titled, Port Elizabeth Girl Has Pig's Valve in Heart.

Hi everyone! I am brand new to the world of blogging and excited about sharing my experiences with the Congenital Heart Defect community and beyond. I will begin with a little history. I was born in Pretoria, South Africa and diagnosed with Truncus Arteriosus Type 2. After many bouts of pneumonia and 4 grueling years I was finally operated on by Dr. Christiaan Barnard and his team on April 22, 1975, at the Red Cross Children's Hospital in Cape Town. The surgery was a success and after 40 days in the hospital I went home to Port Elizabeth, where I spent most of my time trying to keep up with my older brother. At 16 I moved to the United States with my mother and eventually settled in Sacramento, CA. While my health was relatively good growing up I did tire easily and was never able to take part in any sport. My parents had been told that my aortic pig's valve would probably last 10-15 years, but I didn't start to see any signs of deterioration until I was pregnant with my son at age 21. The pregnancy and delivery were truly exhausting and my heart never felt the same after that. I never had another child but feel very blessed to have had my son, especially since  I was told by my cardiologist that I most likely wouldn't be able to have any children. I have always considered myself to be both very lucky and rather unlucky. I was born with a rare and complex heart defect, but in the right place and at the right time to have one of the best cardiac surgeons in the world. Luck and perseverance has brought me this far and I am grateful for everything I have had the opportunity to see and do.

Me, shortly after my first open-heart surgery in Cape Town, South Africa, 1975.