When you have a broken leg, you get a cast. Your bone takes 4-6 weeks to heal. Maybe you need physical therapy, maybe you just exercise. You’re done.
If you have a cold, you take cold medications, or you wait until your cold is better. If your cold gets bad enough to have bronchitis or pneumonia, that the doctors can cure! But your action is clear.
When you have brain issues, your actions are not always clear. At least, mine aren’t.
Back when Hurricane Sandy hit, I discovered a new symptom. I now could tell when a storm was coming. I got dizzier. Yes, my vertigo became much more severe.
I didn’t recover after the storm. I expected that after the storm receded, I would get better. But I continued to stagger and lurch for weeks after the storm went away. Even after we had the tree limbs and leaves cleaned up, I was still walking into walls. I’d give the command to go straight, and it was a matter of probability : would I go left, right, or worse, backwards? Yes, this was with my cane. I cannot tell you how frustrating it was, to not know where I was going to walk!
I was still going to dance classes, and working out at the gym. I was making no progress at dance—it was an exercise in frustration. If Mark was out of town, I canceled my class. Why? I was unsafe to walk up or down the sidewalk alone. (They have street parking.)
I was gaining more muscle strength, but I wasn’t using it functionally. I could measure it by the number of reps, or the increase in my weights. But I couldn’t tell I was stronger by how I moved or walked. I was still walking like I was drunk, even with a cane.
I finally called my oto-neurologist, and saw him in January 2013. We discussed my options again:
- Steroid injections in my right ear to “calm” it down.
- Inject gentamicin into my right ear to kill everything in my right ear.
- Labyrinthectomy: Surgery to “rotor-rooter” (my term) to destroy my right ear.
Remember, I don’t have BPPV. I have oscillopsia, because I have no vestibulo-ocular reflex. My doctor’s theory? My brain has not adapted because something is still damaged but not fully broken. My ear is still fluctuating. If we stop the fluctuation, maybe my brain will adapt.
I have done many things to get my brain to develop new neural pathways: vestibular therapy, the BrainPort, exercise, dance, writing, speaking, trying to speak foreign languages, even some electronic games. All of those require new neural pathways. Nothing has changed my vertigo. I have enjoyed all my new learning. But my vertigo has not changed, in the sense that it has not calmed down.
I have three options. I don’t like my two of my three options.
Gentamicin causes deafness. I’m already deaf in that ear. I’m terrified someone will make a mistake and inject the other ear, or the drops will find their way up the other Eustachian tube and cause me to lose my hearing in my other ear. Yes, this is me being paranoid. I don’t care. Gentamicin is a one-way ticket.
The surgery is a one-way ticket, too.
There is this idea in math called idempotency. In software, it’s about non-destructive testing. Idempotency is this: you should be able to apply the operation to a problem, apply another operation to reverse it, and reapply the first operation, etc.
I wanted a solution that was idempotent—that was nondestructive. I wanted rollback.
I’m not a test tube. I’m a person with limited capabilities. I don’t want more limitations. I want fewer limitations. I asked the doctor about the potential side effects of the gentamicin and the surgery.
“What are the chances I’ll walk out of the gentamicin or the surgery better than I am?”
“I don’t know.”
“What are the chances I’ll be worse?”
“I don’t know.”
“I don’t like those odds.”
I was glad we agreed.
The steroid injections are not so hot either. Why? The injections will cause me to become dizzier. I have to go to Mass Eye and Ear twice a week for two weeks. I can’t drive myself, because I’ll be too dizzy to drive home. I have no idea how long each appointment will last, because these are ear surgeons. You think regular doctors are unpredictable? Ha! These are specialists of specialists.
What am I going to do?
My doctor thought we had only one choice: the injection. But, we had more choices: I could stay the way I was. Or, I could find yet another oto-neurologist. I’d found someone in 2012 for another opinion. I could do that again. But, given the lack of imaging options for inner ears, I realized there was not much point in looking for another oto-neurologist. And, I was miserable. Remember, I’m still walking into walls, staggering and lurching.
I was scared. But I decided to go with the injections.
Mark brought me for the first two injections. I walked in under my own steam. I lay there in the special ear-doc chair. It’s like a dentist chair, a little wider, more comfy.
I had the injection, and then was told, “Don’t move your head.”
I made Mark talk to me. I was in a strange position where I couldn’t bring my phone up to read—it would have been too uncomfortable. I was lying partially on my left (hearing) ear, so I could hear, but I could not have plugged any earbud in, to listen to music. I was dependent on Mark’s conversational skills. Luckily, I know how to prompt him to talk to me. I have practice. That’s what 28 years of marriage gives you.
I needed Mark to walk out. I was incapable of walking on my own. I stayed dizzy for another day or so, holding onto the walls to walk. We had valet parking. Mark had to bring me to the car. I was able to walk into the house.
For the second injection that week, I staggered in, holding onto the wall. I left, holding onto Mark.
I improved during the weekend. It’s a good thing! I only looked drunk, not falling-down drunk.
I had a combination of other friends bring/pick me up for the next week. I was able to walk in and out on my own.
I found the injections exhausting. I wasn’t expecting that. I just lay there, on the table, right?
But I was dizzier at the end of the first week. It took me until the second week to start seeing an improvement. And, it wasn’t until after the first month that I had some relief from the debilitating dizziness. Trying to maintain balance turns out to be exhausting. Now, if it just used calories!
I first noticed a big improvement a few months later, when my speech improved. Yes, my speech cadence.
One result of my inner ear damage is that I talk more slowly all the time now. I think just as fast, but I talk more slowly. To be honest, when I deliver my keynotes or workshops, this is not such a problem!
But when I’m supposed to talk or sing with other people, such as at religious services, I was too slow. I’m still too slow. But it’s less noticeable with my regular speech. I still can’t sing along with the radio, one of my previous guilty pleasures.
Now, a year later, what I notice is that I recover much faster after a storm. I still become dizzy with a storm. When the meteorological mercury goes down, my vertigo gets worse. I tend to recover in a day or so. Not a week or so.
My doctor doesn’t understand why. There’s a lot about our brains we don’t understand.
This is why it’s so difficult to make choices about what to do with our brains, or inner ears. We can’t easily do experiments. We can’t go back, if we make a destructive choice. And our brain medications? We have no clue, most of the time, why they work.
I’m convinced that everyone’s chemistry, brain and otherwise, is different. Why are some of us long and lean, and others short and curvy? Of course genetics is part of it. Isn’t genetics at least partly chemistry?
We know that what we eat has a tremendous affect on how we feel. I know that if I have MSG, too much salt, or sugar, I’m on the verge of a vertigo attack. I choose to not eat those things. I’ve eliminated wheat and most starches from my diet, also. I don’t have much caffeine. I’m willing to do this, because not being dizzy is more important to me than eating those things.
My choices are mine. I can never tell you what choices to make. But here is a framework you might want to consider:
- If you ever think you only have one choice, think again. You must generate more than one choice. Use the Rule of Three to generate at least three choices. That will help you break through your stuck-ness, and generate more choices. Hint: Think “and”.
- Don’t let other people’s filters prevent you from solving your problems. Remember when I explained how my physical therapist could not imagine how I could get into the shower? She was stuck and had filters about how people get into the shower when they are short. She hadn’t been short in a very long time.
- Consider several opinions, unless you’re dying of something. If you’re dying, get help. But, second opinions or pairing is really helpful. I work with other people in my consulting practice. I write with other people. I find that we are often better together than I am alone. Generating ideas together is especially something that you want to do with a few people (not a mob).
- If possible, select choices that provide you options that don’t rule out other options. If you keep in mind the idea of rollback, that idempotency idea, that might be helpful. That doesn’t always work.
- Use your support system. Mark and my friends were invaluable in this adventure. They listened. They drove. They talked to me in the doctor’s office, while I was lying there with my deaf ear up, waiting for the injections to do their thing.
I agonized over this choice. In retrospect, I didn’t need to. My outcome was great. I was lucky. I’m still walking independently.
My doctor is much happier when he sees me now. I think he was depressed to see me, because my brain didn’t respond to what he suggested. Doctors like positive feedback, too. Yes, doctors are human :-)
My injections didn’t heal me. While I was drafting this post, I took a break to pack for a tutorial at a conference. It took me 30 minutes. At the end of it, I was breathless, inarticulate and back to slurring my words. Why? Because I had bent over, turned my head, and challenged my vestibular system in countless ways for 30 minutes. I sat down for the next hour, didn’t speak, and recovered. But the injections make my daily life just a little better.
When you’re faced with a choice that is difficult, expand your options first. Consider how your mental models are helping or hurting you. Maybe get some help from your friends.
Choices can be difficult. How you make them can make them better or worse.
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