“Why Did It Take You So Long?”

I promised a few posts ago I would answer the question, “Why did it take you so long” when Daniel asked me about using a cane. You see the same behavior in other situations: Widows who can’t clean out their husband’s clothes after 20 years, the woman who’d been laid off for several years who still called herself a Cobol programmer (not a programmer, a Cobol programmer). In fact, if you’d even asked me a few weeks ago, if I was handicapped, I would have said, “No, I just use a cane.”

I now say, “I am handicapped.”

So what has changed? I have the Rule of Three to help.

The Rule of Three says that you need three reasonable alternatives to show that you understand the problem before you can select a solution. One solution is a trap. Two is a dilemma. Three allows you to see true alternatives, and breaks logjam thinking.

I was stuck, along with my vestibular therapists, my ENT, and my oto-neurologist (that’s the inner ear neurologist) that I was going to get better. That was our one and only transforming idea. My physical therapist, who was helping me rehab my sprained ankle, and Esther, had other potential transforming ideas. Primary among those transforming ideas was that my oscillopsia was permanent and that I needed to find a way to live with it.

I had the idea it might be permanent, but I thought it might get a little better. I didn’t think it would be as severe as it was. It was difficult for me to imagine that the world would continue to move up and down every time I moved my head. It was inconceivable that I would have to live like that. So I didn’t conceive of it. That simple. If you don’t allow for a future possibility, you don’t allow for a transforming idea that includes it.

My condition is quite rare. Those other people who have it appear to respond to vestibular therapy. And, they don’t have oscillopsia. I appear to be in a rare—if not—unique position. (BTW, I don’t recommend this. If you decide to get a condition, get something common.)

So there are several things going on and my medical specialists are stumped. I cannot conceive of life like this and have no ideas, certainly nothing that satisfies the Rule of Three.

So, what has changed? My vertigo changed (another foreign element for me), I had another round of ENT, MRI, oto-neurologist, and used the Rule of Three.

Last November, I spoke at a conference in Orlando. I was unable to drink enough water to stay sufficiently hydrated, and developed a new kind of vertigo, (in concert with pulsating tinnitus) a sort of pulsating whirling vertigo on top of my oscillopsia. If I sat down, it was better, so I sat while giving my last talk. I was not at my best and was quite uncomfortable. I called my ENT when I returned home, and after sleeping a lot and drinking a lot for 2 days, it went away. She saw me anyway, did another audiogram and MRI. No changes to my hearing, and the hemorrhage has disappeared.

But if the hemorrhage has disappeared, why are my symptoms still changing and increasing? This is not a good sign. This was a foreign element that said to me that things were really never going to get better. I had better learn to live with strangeness in my head. Not voices, although who knows if that will happen :-), but certainly vestibular strangeness, because if the hemorrhage is gone, and my balance is not back, and is getting worse, it’s not going to get better. I can kiss that hope goodbye.

I was upset, but in a way, it was freeing. I could stop being optimistic. I could focus on alternatives in a way I had not before. My ENT pushed the oto-neurologist to see me, and I saw him in January. He only takes the tough cases, because he’s primarily a researcher.

We discussed the alternatives. There is medicine I could take that would kill the semi-circular canals in my right ear. Neither of us liked that alternative because we don’t understand why my brain hasn’t adapted to my condition. I could end up not being able to walk at all. No thank you! There is surgery to rotor-rooter out the entire inner ear which we rejected for the same reason. There is anti-seizure medicine I can take. If that doesn’t work, I can try a cortisone injection in my right ear and see what happens.

In January, after a false start, I started on an anti-seizure medicine. This is serious medicine with serious potential side effects, which is why I had one false start. I didn’t understand the how-to-increase and stopped eating for two days. I do need to lose more weight, but not like that.

I have more balance now, but not much more. I have more stamina now. It’s obvious when I have waited too long to take medicine. One of the side effects is a dry mouth, so I drink gallons of water. One of the side effects of all that water is that my skin has never looked quite so good!

Back to the reason people get stuck…

When it comes to being stuck, I think people get stuck on a false transforming idea because of false optimism. Our families want us to recover. For months, my mother asked me about my hearing. I finally said to her, “Mom, I am deaf in my right ear. I am never going to hear anything out of that ear again. If you want to help me, please don’t ask. Okay?” She started to cry, because she was so upset. But I couldn’t take it anymore.

Our medical professionals are trained to heal, and when they encounter something that does not respond to healing, I wonder what they can say or know what to say. My vestibular therapists were wonderfully supportive. I never asked them about canes, and I wonder why they didn’t suggest one. I suspect they kept thinking, “If Johanna tries just a little more, she can do this.” I had 8 months of vestibular therapy before I started using a cane, and not on their suggestion. I wonder when it’s time to suggest non-therapeutic help.

If you’re stuck on The One Transforming Idea, you cannot see there might be another. I don’t know when the right time is to suggest to other people that they stop being optimistic. As with everything else, it depends. I waited too long. I was handicapped long before I admitted it to myself.

The false optimism prevents you from discovering alternative transforming ideas. Without a reasonable transforming idea, you easily fall back into old status quo. Even though I’d had an inner ear hemorrhage and was walking around like a drunk, even with a cane, I said I wasn’t handicapped. I was in old status quo. That’s why it’s such a big thing for me to say, “I’m handicapped.”

Let me try it just one more time. “I’m handicapped.”

And, as Griffin suggested last year at AYE, and recently in a comment, it’s time for me to investigate sign language, because I’m half-deaf. Oh boy. That was a big one.

5 thoughts on ““Why Did It Take You So Long?”

  1. Jim Holmes

    Thanks for a wonderful, frank post.

    I ran in to much the same issue with false optimism two years ago when I was diagnosed with type 1 diabetes. There was a short period of a few days where my doctor and diabetes educator were holding out some false hope that my body would return to normal once we got my blood sugar levels down from their initial highs. I was fixated on the idea “I’m not a real diabetic and I won’t have to take three or four shots a day for the rest of my life.”

    Unfortunately, that turned out to not be the case, and it was critical for me to get past that false hope and get my head on straight about dealing with the long-term reality.

    That experience was actually quite useful for me professionally — it made me take another look at situations around me where people would be stuck on, as you say, the One Transforming Idea regarding projects, careers, etc. Difficult situations don’t magically resolve themselves, and one must be able to step back and rationally assess the problems in order to move past them.

    Again, thanks for a great post.

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  3. Joanne

    You sound like me. I’ve had 3 muscular eye surgeries when I was young before the age of 7. I was considered legally blind because my eyes were crossed and turned upward. The surgery wasn’t perfect and my eye are not lined up perfect. As I grew my coordination was off, I had trouble taking in visual information quickly enough and responding to it. I was called names like scattered brain or spastic. My biggest problem is losing my balance and falling when I move my head while moving my body at the same time. This happens on my right side. I was told I have torsional nystagmus, so now I’m looking for a specialist in NY.

    1. johanna Post author

      Hi Joanne, ah, yes. I am quite slow on the uptake, sometimes. I hope you find some help for your nystagmus. What a pain. (My nystagmus is now less frequent, so it’s inconvenient.) I hope you find someone to help you. I’m based in Boston, so I know people at Mass Eye and Ear, and that’s not so helpful for you.

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