On Losing a Child and the Complicated Aftermath

By Mindy Levine

This is what it feels like, these sudden and stifling attacks of panic: like a wave that I can sense approaching but am powerless to stop, kind of like the waves we saw in the ocean on Cape Cod last August, but more like a train wreck than a pleasant vacation experience.

Mindy jpgHow, in the middle of the attacks, it becomes suddenly virtually impossible to do anything, say anything, move anything; how even breathing itself feels like a monumental effort that may not happen at this moment. How these attacks happen in public and are wildly inconvenient and brutally, mortifyingly debilitating, and how there is virtually nothing I can do to stop them from coming, or to help bring them to a quick and painless conclusion.

Anyone with any kind of mental disease will recognize parts of themselves in this description, will nod their heads and say, “yup, this is me, it can be me, it might one day be me.” For anyone who has not, like my husband, it is like speaking a foreign language to try to describe what it is like. For him, I might as well be speaking Swahili for all the good it is doing me, for his continued fundamental inability to understand why I can’t just snap out of it long enough to get through the doctor’s appointment in one piece.

It’s always a doctor’s appointment these days that triggers the panic.

Coming barely six months after I gave birth to a beautiful healthy daughter and her dead twin brother, it is easy to understand why doctors’ appointments might be a trigger for panic attacks.

Our son was diagnosed almost one year ago with a rare but fatal genetic disease. Had he been born, he would almost certainly have died within the first 3 years of life. From the moment we were first told our son was sick, our life became a whirlwind of appointments at Boston Children’s Hospital: ultrasounds, fetal MRIs, high risk OB appointments, and fetal stress tests.

The whirlwind of appointments began to slow with our son’s in-utero passing in the beginning of September, although it wasn’t until the very end of September, following my precipitous labor, ambulance ride, and emergency C-section under general anesthesia, that those appointments abruptly ended. Ever since, anything medical, for me, my family, and especially my children, is enough to trigger the pounding heart, hyperventilation, and general disconnect from reality that are pretty typical of my panic attacks, and it turns out, of PTSD in general.

This PTSD was not helped by a February weekend trip to New York that turned into an extended five day stay at Columbia Presbyterian Hospital, where our middle son was diagnosed and treated for Lyme disease arthritis. In fact, it was my emotional response to that medical roller coaster and all ensuing drama (middle of the night surgery, canceled work trips, 24 hour separation from my exclusively breastfed four month old infant) that made it clear to me that I had a problem, and that I needed help.

Here is where most stories veer off into the prototypical story line of “then I realized I needed help, and so I got help, and that was a good decision that I should have made sooner.” That’s the story line which neatly delivers mental illness to the reader in one tidy package of something that can be successfully “treated.” And it is precisely because my story lacks that neat and tidy ending that I hesitated to write and publish this in such an open form. Because the truth is, I know I need help. I know this because of blogs like these that remove the stigma of mental illness and make it clear that mental illness is not something that you can snap out of if only you tried harder. And I know that it is not something that is shameful or embarrassing.

I know I need help, and I haven’t gotten it yet. Every week it goes on my to-do list, and every week I get to the end of the week and that item is still not crossed off.

In the meantime I try not to go to doctors’ appointments alone. I try not to go to doctors’ appointments at all, honestly (although that particular effort was recently derailed by an emergency toe surgery on two broken toes). When I do have panic attacks, at least most of the time they don’t take me completely by surprise, and eventually they pass.

The irony of needing to go to a physician to address a panic disorder triggered by physician visits is not lost on me. I am pretty sure that one day soon I will start to get help.

Mindy Levine lives in Sharon, MA with her husband and three living children. She works full time as a chemistry professor and science junkie. In her spare time, she does informal science outreach, trains for triathlons, and tries to stay out of trouble.

Interested in submitting your story? To contact the Mental Health Safe Space blog, email mhsafespace@gmail.com. Like us on Facebook at www.facebook.com/mhsafespace.

One thought on “On Losing a Child and the Complicated Aftermath

  1. rachel says:

    After miscarriages and a high risk pregnancy, I can relate. Going to the doctor does get easier but it takes time. I started with seeing an acupuncturist. She helped reduce anxiety on a non medical setting. Much hatzlacha!

    Like

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