Today I’m not ok. Today our community is grieving. Today 3 families are devastated.
On the 1st, I learned of the passing of my friend Steve, from Covid-19. He had Marfan, and we became acquainted online when he asked me to write a quote for his book, Custom Scars. He was a preacher who wanted to share a message of hope with the connective tissue disorder (CTD) community.
On the 7th, my friend Alice’s husband let me know that she had died. Alice was a member of the Marfan chapter in California with me. She babysat my boys. Her daughter was in the teen program with me. Alice was soft-spoken and one of the kindest people you could ever hope to meet.
On the evening of the 8th, we all read on Facebook that Helene had died. Helene was a pillar in the online CTD community. She had Loeys-Dietz syndrome and was so helpful to everyone she came across. You can’t find someone who didn’t love Helene.
When my best friend Sandy died from a dissection, I was 13 years old. My mother called a doctor to ask them how to tell me and what to expect. The doctor counseled her that I would be concerned that *I* would die, that I would be confronting my mortality for the first time. But that wasn’t true. I knew Sandy and I were different medically. What I felt was survivors’ guilt, though I didn’t know the term at the time. And I felt rage. I was SO ANGRY that her family KNEW she may be dissecting and the doctors didn’t believe them.
So, I poured all my idealist 13 year old energy into education. If I could just find a way to educate doctors, what happened to Sandy wouldn’t happen to anyone else. Over the years I’ve become excellent at that. I spend a LOT of time trying to help patients, parents, and medical providers get accurate medical information.
But while my 13 year old self fervently believed that education was the key, that if we just knew to take our medication and get our echoes and have access to knowledgeable doctors we would live long lives, 36 year old me has long since learned the truth: education has its limits.
It makes a good sound bite: “aortic dissection is what kills, so know the signs and follow the guidelines!” However, that forgets the strokes, the heart failure misdiagnosed as pneumonia, the emphysema that slowly robs you of breath, the infections, the surgical complications. To cope, we tell ourselves we have control, but it’s not the truth, or at least not the whole truth. And that, my friends, is depressing.
Loss is the price we pay for being a part of the community. I am grateful every day for the connections I’ve made in the Marfamily, and those relationships sustain me through the hard times. Even though I lose a piece of my heart with every “goodbye, for now,” I would choose that a million times over to the absence of the hellos, Facebook messages, and hugs.
Today I’m not ok. I don’t know if we’re ever truly “ok” after losing someone we love, or maybe our definition of “ok” just changes. But tonight, I’ll dry the tears, put on a dress and some makeup, and I’ll meet friends for my first post-vaccine dinner out: Foundation staff, fellow Marfs, and doctors.
Today many of you aren’t ok, but we’ll figure out our new definition together.
Steve, Alice, Helene, Sandy, and so many others: we love you. Thank you for sharing your lives with us.
