Jeff (age 43) Bilateral Vestibulopathy, 2012 Oregon
One night In late April 2012 I awoke about 3 or 4am with the worst headache I’ve ever had. I couldn’t sleep, so got up and waited until the doctors office opened and got there as soon as it opened at 11am which seemed like an eternity.
The doctor said I had an ear infection and wanted to give me antibiotics. Now, I had been fasting at this point for 12 days and had just broken the fast the night before with a few very small bites (the fast was to spend serious time in prayer about my very stressful job and also for my wife’s deteriorating health). So I asked the doctor what would happen if I didn’t take the antibiotics as I didn’t want them with nothing else in my system. He said the worst case was that I could get meningitis and die, but that that was unlikely. More likely would be that my eardrum would rupture, relieving the pressure in the ear, which would be a kind of cure, after the ear drum healed.
Well 5 minutes after I got home from the doctor the eardrum ruptured! I figured I was good to go. I had some hearing loss, or more accurately hearing fogginess, but over the next week that fogginess was gradually replaced by the fogginess of oscillopsia and imbalance. I went to the doctor again to see what was going on and why I felt like I was a drunk walking on a rocking boat all the time.
They originally said I had Benign Paroxysmal Positional Vertigo (BPPV) and gave me maneuvers to do that did nothing. Then they sent me to physical therapy, then to an ENT who both did not know much but did lots of tests and were sure it would go away at some point. I got an MRI on my brain and was sent to a vestibular specialist in Portland (I live in Eugene, Oregon), who finally diagnosed me with idiopathic (i.e. which means unknown cause)(you’d have to be an idiot to know what caused it) Bilateral Vestibulopathy. It was permanent and untreatable. This would have been worse news if I hadn’t already figured out it wasn’t getting better on my own.
In the meantime, during the months of testing going on, I had given notice at my work and quit the job to pursue working for myself, originally expecting, then hoping that I would get better. I didn’t get better, but I did make incremental improvements in coping with things, which I’ll talk about soon, but first I want to go back to the fasting for a bit. During this time a few remarkable things happened. The first was that I was connected to my creator in a way I’ve never been before or since. I had mental clarity I’ve never experienced and energy that you wouldn’t expect with zero caloric intake (I’m a skinny 145 lbs to begin with). The other thing was I was given some clear dreams. One of them said I should quit my job and work for myself; the other said that my wife would be getting better from here on out. Now, three years later, she is 90-95% improved. As for the job, I did quit and went to work for myself making banjos and ukuleles, an undertaking that has been both challenging and rewarding. My dream never said it would be easy or even successful, just that I should do it. I have since gotten other part time work in a completely different field to make ends meet. The work has been limited in what I physically can and cannot, or should not, do, but I certainly see God’s hand in it as well.
Over these last three years however, my brain has certainly adapted to my limitations and certain things have gotten easier. I truly believe that the key to my improvement has been to not stop doing anything I did before unless it really might risk my life or someone else’s. I kept riding bike (quite scary at first), driving (challenging turning my head quickly to change lanes or merge), and hiking. I climbed ladders while holding on for dear life and pushed my wheelbarrow around while tipping like a drunk. I walked outside at night and laughed when I fell in the bushes.
Our brains are amazingly adaptable, so that even though I know my physical symptoms have not changed, my brain has adapted to dealing with them exceptionally well. I now bike and drive without a second thought, although I do take certain precautions. I still have oscillopsia, but I can refocus my eyes much quicker after turning my head than at the beginning. I hope, and expect, this improvement to continue. I know that there are all levels of disability from this, so that everybody’s path will be different, but I do think that with a proper attitude towards God in recognizing that He is allowing us to go through this, He will also help us to overcome it. Overcoming does not necessarily mean being healed – it is just that we have choice in our response to our situation. Joseph did not hate his brothers for selling him into slavery in Egypt because he knew that God had ordained it for the eventual good of his family and future generations.
Again, it is my prayer that God will be with you on this journey.
With God’s love to you,
August 20, 2015 @ 2:09 am
Thanks for this touching and inspiring account. My balance was destroyed by gentamicin many years ago and I am still learning from others how to live creatively.