(John drafted this but never finished it. His lifelong struggle was getting people to understand that his condition was as terminal as cancer. It was very hard for me, as his wife, to see that people did not understand this, how delicate his precious earthly life was and every time they beheld my darling husband, they were beholding a wondrous miracle of God. Humankind cannot bear very much reality.)
They understand “heart disease.”
They understand “diabetes.”
At least as well as they “understand” anything about someone else’s sufferings.
I’ll never “get better.” I’ll never “recover.” I have good times and I have bad times, but my “good times” usually lead directly into my “bad times” because my body can’t take it.
I have a dissected aorta. If such things can be quantified, articles on pain often mention aortic dissection as the worst possible pain a person can have (though it can also be asymptomatic).
I have 2 aortic grafts, including an artificial valve.
I have a 4.9 cm aneurysm in my gut that will, if it doesn’t burst first, have to be operated on once it hits 6 cm. Right now, my left kidney and left leg are getting their blood supply. from scar tissue. The most likely best outcome of my next surgery will be that I lose just one leg or kidney.
In fall 2008, I spent 2 months coughing and taking antibiotics for “pneumonia” and was told I had a nodule on my left lung that looked like a possible tumor, too small to biopsy or operate on yet. After my dissection in 2011, I found out it wasn’t a nodule or a tumor–it was scar tissue from a lung collapse that wasn’t properly treated–the two months of “pneumonia.” I spent two months thinking I had some horrible contagious disease and then 2 years after that thinking I had early stage lung cancer (attributed to my frequent CT radiation) because an urgicare doctor didn’t know that hearing no air in my lung (his words) meant it was collapsed and not pneumonia.
My natural lenses sit at the bottoms of my eyes, attached by a few zonules. If those ever tear completely, my lenses will pose a risk to my retina and have to be removed. As it is, if I turn or move my head too quickly, or lay flat, my lenses float up, disrupt my vision, disrupt the pressure in my eyes, and give me a headache.
I have, for simplicity’s sake, a brain aneurysm. It’s in a vein, so they say it’s nonoperable and won’t burst. But it’s right in one of my motor cortexes, and when it acts up it causes everything from slurred speech and forgetting how to sign my name to migraine to loss of motor control.
I have a tortuous carotid artery.
I *used* to have mitral valve prolapse, but that has apparently been healed by the Lord.
I have a paralyzed vocal cord, the cost of my last aortic graft surgery, which not only limits my speech but my swallowing and breathing.
I have gastroparesis, and eating too much or eating the wrong foods causes unbearable cramping, nausea and occasionally vomiting.
That’s not getting into my chronic joint problems and the side effects of my medicines.