Have you ever had a day where everything, and I mean everything, seems to crash down upon you all in one instant (or at least it feels that way)? It’s as if the stars in the heavens above met at a conference and decided that today, they would rain down their fury upon your life in one snippet of time. The chaotic shower thrust upon you is a steady stream of falling boulders, knocking you off kilter and leaving you with wobbly legs. It feels endless. Amid this turmoil, you fall to your knees and plead silently for one fragment of peace, so you can gather your courage to carry on.
I had a day just like this in 2004. I had been sick for 14 months. The doctors were either baffled, ignorant, or just inadequate in their ability to correctly diagnose me. All I knew was daily excruciating pain on multiple levels; my limbs ached, my feet stung, my head pounded, and my vision blurred. All the time. Every single solitary day. For fourteen months I was positive that death was just over the horizon, waiting for me dressed in black and carrying a bloody scythe. The prospect of my condition worsening seemed impossible.
I was wrong. So wrong.
My husband, Todd, bless his heart, drove me to the doctor for the ump-teenth time because again, my vision wouldn’t allow me to navigate the trip safely on my own. We sat in the examination room, waiting for the doctor to enter and misdiagnose me once again. I described my symptoms, my pain, and my frustrations, then sat quietly waiting for him to announce that I had plantar fasciitis and subsequently prescribe custom orthotics (which never worked, and adding another set to my existing 5 pairs would prove to be useless yet again).
Surprisingly, this time the doctor insisted that I had a neurological problem, which he thought needed to be addressed immediately. A cat-scan was ordered, an appointment with a neurosurgeon was scheduled, and we were on our merry little way.
Flash forward a month, and again, Todd and I sat in yet another examination room, our hearts heavy with bleak anticipation. A short man walked in (and when I say short, he was maybe 5 feet tall, and that’s being generous), he sat on the stool, and asked if we wanted the good news or bad news first. At those words, I felt the weight of the chaos building. It stifled the air around me.
Turns out, I was pregnant (hold your excitement for a moment). In addition to that, I had a Chiari I Malformation. People can often live with this condition without ever experiencing a single symptom. I was not so lucky. Mine was severe. I had all the symptoms, which I can tell you is unpleasant (kindest word I could think of). On the surface, it’s easy to say it’s no big deal, however, in my case, it was.
Immediately after informing us, the neurosurgeon says, “You need to have brain surgery. If you don’t you have a 100% chance of dying. If you do, you have a 50% chance of dying.”
Of course, we ask why surgery is necessary, only to be informed that my brain had fallen into the spinal cavity and now, fluid was building around the brain stem. It was only a matter of time before it was crushed.
Take that in.
Crushed Brain Stem = Instant Death.
As an added bonus, if I agreed to surgery, the baby could be lost. If I waited for surgery, I may not live to even give birth. Let’s just say, I lost the baby (it was ectopic, but that is an entirely different story all together) and moved forward with the surgery. This day was exactly the day that I described above. The boulders above streamed down like droplets of acid rain that seared the flesh. I panicked. My only solace was, Todd. He was a rock that day. A fragment of peace that I needed to compose myself. The strength I needed to carry on and push through.
The point of relaying my experience is to demonstrate that it’s critical to find that fragment of peace. Whether it’s a place in the world or a person in your life or faith in God. Find that one kernel of strength and hope to carry you through. And if you’ve found that, hold on to it until your knuckles turn white. You may need it as you move through your life for the unexpected chaos that the heavens above rain down upon you.
Whoa. I am SO glad you are better!
(And goodnight, for now, from my part of the world!)
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Good night and take care.
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I don’t know how to even react to this most.. I have autoimmune and I don’t have diagnosis…its been 3 years..
but then I read the rest..I lost train of my thoughts.
I am glad you had somebody to hold you and stand by you through all of this. you both are lucky to have each other.
just take care of yourself. our body is precious I realized it after I fell ill.
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Thanks. I know what it’s like to be ill and I wish you the best. Truly.
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thanks 🙂
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Great post! Blessings and courage on your journey from a fellow Chiarian.
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Thanks so much. Hope all is we for you
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