It is a huge thing when you have a Neurosurgeon shrug at you. In the Western World, Brain Surgery and Rocket Science are the pinnacles of Intelligence, to the point of being cliché, so when a Brain Surgeon doesn’t know what to do, it becomes hard to be hopeful.
My wife has always been a miracle. Born three months premature, she was 28 years old before she realized that her Cerebral Palsy was going to push her out of the workforce. The road since then has been rough and fraught with shadows yet still she overcame.
The problem started soon after the birth of our second daughter. Through a series of mishaps we cannot legally go into, my wife formed a rare Neuralgia known as Geniculate Neuralgia. Neuralgia is, from what this layman understands, a nerve that has malfunctioned and begins sending notices of the most horrible atrocities. In this case, the Geniculate Nerve, a tiny nerve inside the back of your head, begins sending messages that you are being stabbed in the right ear with an ice pick that is also on fire. It is referred to, colloquially, as ‘The Suicide Disease.’
Strangely, this is treated like a bad ground in an old school speaker wire. You tap it and move it around, hoping you find the bad spot, and then you cut the wire and hope for the best. The problem is that, with each brain surgery attempt, the success rate drops: 80% the first time, 20% the second. After that, they expect you to wait a decade before attempting it again. Each time, they have to teach you how to walk again.
They have tried twice now, once through invasive brain surgery and another through a neck dissection. Neither of these was successful.
The timing couldn’t be worse, either.
After braving the ‘Worst Winter of 50 Years’ (2011. I used quotes because these snow records disappeared the next year) in my hometown in Ohio, my Arizona-born wife decided that we should move back to her hometown in the desert. While working 60+ hours a week trying to build a nest egg for the jump, I was hit by another car while parked on the side of the road. The damage to the vehicle was minimal, but the migraines I got starting that day were awful.
It was a year and a half before the bone spurs in my spine were detected. Due to this and my status as a disabled veteran (since 1996, which I had never taken seriously before), I needed a doctor to say that the migraines were related to the accident.
This word was officially delivered 7 days after the Statute of Limitations expired.
Our days are filled with a haze of pain that varies with the weather and the hiccups that are produced through Medical Bureaucracy, both of us weighing our next procedure on the balance between our pain tolerances versus the other’s anguish. When I finally could put mine off no longer, therapeutic Botox across my neck and shoulders in an effort to literally kill off some of my nervous system, we suddenly heard of a procedure to address my wife’s anguish, which had to work. It was the day after my procedure, a few days after my wife’s, which our daughter announced that three people had thrown up ‘right in class.’ Suddenly, we had to have both quarantined at opposite ends of the house, with my badly-poisoned self shuffling back and forth between the two, and washing well in between.
The delicate balance of my wife’s health necessitated us pulling our daughter out of school and struggle through a school online.
We had originally moved back to Arizona to start a little farm. Calls for massive cuts to Social Security let us know that we needed to become a little more self-sufficient. We began Dharmish Farms in 2012 and launched in 2013. Our goal had been to supply eggs, training and heritage breed chicks to the economically depressed. We never expected to join them.
After a lot of heavy predation, my heritage flock was finally up and ready for production when my wife’s brain surgery appeared. A responsible farmer takes care of his animals, even if that means selling them at cost to ensure that they are cared for quickly. You rebuild again on the hope that that was the last speed bump, racing to get things going before the next one, when I had a flock up and ready for production (a six month process) when the neck dissection occurred and I ended up selling them again at cost. I have reduced my flock down to the Prime Flock more times then I have cared to admit as the waves of pain spike and change all of our plans.
Sometimes, you eat the Bear and sometimes… well, sometimes the Bear eats you.
We ask for your donation today to address costs we have accrued up to this point and to address future costs. It will give us the opportunity to get the farm up and running far enough to weather the waves, allow my wife and I to further pursue the next operations and remedies to get ourselves back on our feet and allow us the leeway to complete vocational rehabilitation so that we can be as productive as we can be.
If you can’t give, maybe you can help in other ways. Perhaps you know the Star Neurologist Student or Neuroscientist looking to publish some papers and make a name for themselves. My wife’s condition is the type they write books about, and they sell especially well if they end with the correct answer.
We long for the days of playing in the park with our children, instead of telling them each day that mama and daddy hurt too much to play. Our disorders have affected them so much, as they wait for us to return from weekly doctor appointments and play quietly because the loud noises set off Mama’s neuralgia and Daddy’s migraines. They are our blessings, and we long to return to some kind of normalcy, be it through more procedures, experimental procedures… anything that can make the hurting lessen to some degree.
With luck someone will stop shrugging their shoulders in response to my wife’s Geniculate Neuralgia that causes her such extreme pain, every single minute of each day for the past three years, and they will perform a surgery that works, even a little bit. She doesn’t expect a miracle since neuralgia is incurable, but she still hopes that one day the pain will subside enough that she can return to doing the things she loves: baking and cooking for our family, crafting, raising our girls, and reading in the quiet moments before bedtime.
She has lived her entire life in pain due to the mild cerebral palsy, but Geniculate Neuralgia is a monster, causing the most intense, unstoppable pain beyond imagining It is nearly impossible for my wife to make it through each day without weeping.
No one has the monopoly on suffering. We’re just hitting a rough patch and hope to be better soon.
Thanks for checking this out (especially if you read this far.) Any donations would be gratefully and humbly accepted.
Gypsy Rue
Gypsy Rue 