The Grief in Living with CHD
We often think of grief as the pain felt after the loss of a loved one. Sometimes, with chronic illness, however, we grieve for the loss of our own former selves, of the life we lived as (relatively) healthy young adults, or our hopes for the future. In this week’s blog, Nicole, an adult with CHD, shares how she learned to turn her grief into strength.
Midwestern winters are long, bleak, and oppressively cold. I know the world has been laden with grief the past two winters—a global pandemic, mass shootings, a war in Ukraine, inflation, isolation, polarizing ideology, fear, and ambiguity to say the least. If you have CHD, you were probably juggling your illness in the background. Maybe you did not know exactly where your grief fit into this picture, because the world’s grief was so overwhelming. Maybe you have never really thought about CHD grief at all. Wherever you are at, I hope that you take time to read this to see how sitting with grief has helped me move forward with CHD.
In the background of the world’s grief, I have been processing my own grief.
November, 2020, I had 3 small strokes in spite of dual anticoagulant therapy.
December, 2021, I had 3 small strokes again.
February, 2022, I went to Mayo Clinic to get a tertiary opinion about the strokes. My vascular team determined my titanium mitral valve was causing the strokes, and they gave me two treatment options: a new dual anticoagulant therapy or open heart surgery to remove the titanium mitral valve and replace it with a tissue valve.
Those treatment options were difficult to hear, and they took me back to memories I did not want to revisit. I have a long and complicated history with heart surgery.
1997 and 2008, I had open heart surgery to repair my mitral valve.
2010 I had open heart surgery to replace my mitral valve with a tissue mitral valve. Two weeks post-op, I had heart failure, fluid overload, dehydration, anemia, colitis, internal bleeding in my back and stomach, tachycardia, and a high grade fever. 2013, I had an ischemic stroke.
2015, I had open heart surgery to replace the tissue valve with a titanium mitral valve.
March 19, 2022, I started a new dual anticoagulant therapy. In six months, I will get an MRI. If there has been new damage, I will have a fifth open-heart surgery.
Sometimes when I’m alone, I have memories of heart surgery—the smell of the ICU, the sounds of the machines, the feeling of the chest tubes tugging at their staple-like sutures, my sternum tethered with wire where bone should be. And in these moments, I am flooded with fear, and I realize how much I do not want heart surgery.
When I feel any intense emotion—particularly fear or sadness—I realize that I am grieving. My grief sometimes comes out of nowhere. And my grief has paradoxically helped me recover. But if I’m being honest, grief is not easy. It’s raw and heavy and brutal, but in the end, it is freeing.
“Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life’s search for love and wisdom.”
Rumi
Grief held me in the crook of its arm these last two winters, when I recovered from the small recurrent strokes.
It began as bargaining—telling doctors I would do any test, treatment or surgery to prevent more strokes and feel better.
It was sadness—regressing into a child, crying in my bed, unable to sleep because the reality of CHD kept replaying in my head.
It was fear—living with the reality that I was not safe inside my own body, that I could have a stroke at any moment.
It was shock—the loss of the illusion that I was as healthy as I had previously thought I was.
It was anger—feeling the injustice of it all, realizing how much I hated CHD, realizing how much I did not want it to be part of my life, realizing how violent and unnatural it was to be in what felt like an endless cycle of sickness and recovery.
It was denial—holding onto this metaphorical tug-of-war-rope with both hands, while CHD pulled me back.
I think we are afraid to grieve, because we are afraid of our emotions. More specifically, I think we are afraid that we will get stuck in one phase and completely lose ourselves in the sadness. What if we never stop crying? What if we never stop feeling angry? Do we even have a right to grieve when so much is happening in the world? Those questions are valid, and I struggle with them, too. But I have learned the emotions will not maintain their intensity. In other words, when I allow myself to sit with emotions in grief, the intensity eventually subsides, and I actually feel better, like there is more space to fit better things.
I’ve also learned each phase of grief holds its own significance temporarily.
Denial feeds a hunger to feel normal for a time, to put the reality on a shelf while you do the normative tasks at hand.
Bargaining helps us see how much we truly value our lives and the people in our lives.
Sadness teaches us how to extend ourselves love, compassion and genteelness, something we need when we experience the hardship and heartbreak of CHD.
Anger empowers us to stand up for those broken pieces of ourselves, and it gives us the strength to be proactive in our care and self-advocate. Anger gave me the strength to refer myself to Mayo Clinic.
Acceptance helps us reach that juncture when we finally drop that tug-of-war-rope called denial, and we surrender to the idea that yes, I have CHD, yes, this is happening. Surrendering doesn’t mean surrendering to self-pity or settling for less than what we deserve. It means dropping an excessive weight of denial.
For me accepting CHD means I understand CHD is a very tragic part of my life, but it is only part of me, not all of me. Acceptance helped me understand that health setbacks, even heart surgery, may be part of my life, but that I have small choices I can make each day to live the best life possible.
Nicole Busch is a 33 years-old stroke survivor with Mitral Valve Disease. She resides in Central Illinois, and she works as an eating disorder therapist. Nicole is passionate about helping others and reminds herself what a privilege it is to work and have her independence, especially as a stroke survivor. She has volunteered in her community for a Heart Disease Support Group called Powerful Hearts until the pandemic. Recently she created a YouTube channel called Heart Disease Diaries. Each week she posts new videos to spread awareness about heart disease in younger individuals with CHD and to help those living with chronic illness manage the physical and psychological toll of their illness.