Regaining My Equilibrium

I’ve had a rough month. When I returned from Agile 2009, my right ear didn’t unblock from the plane. I couldn’t hear out of it, and it was blocked. I didn’t think much of it–I went to the doctor who said, “yup, you’ve got fluid. Take decongestants.” I did, and the vertigo got worse. Finally, I went to see an ENT doctor for what I thought was going to be a myringotomy. However, by then, I had no extra fluid in my ear. With a hearing test, we discovered, I am close to completely deaf in my right ear.

When you have “idiopathic idiopathic sensorineural hearing loss” (we don’t know why, it’s from the nerve, and you can’t hear), you get an MRI. I did. I have an unusual MRI now–some hemorrhage in my right ear, and a meningioma. Meningiomas are benign brain tumors. They do need to be watched to make sure they don’t screw your brain up. As the doctor said, “You don’t have MS or brain cancer.” Well, that’s a relief. (An aside: now that relatively healthy people are getting MRIs, they find things. I suspect I will die from something quite different 🙂 We don’t know about the hemorrhage, and my doctor is talking with other docs who know about these things.

I have to learn to adapt. I’ll be buying a new alarm clock, both for home and travel (anyone use one with a light to wake you up?) I have to learn to be around people where there is lots of noise all around. It’s difficult to know where the noise is coming from and to filter the noise correctly. I have to be extra alert around my right side, because I can’t hear anything there. It’s amazing how many people walk next to me talking, and have no idea I can’t hear them. Oh, and don’t get me started on people who cover their mouths when they talk. Argh! I start on physical therapy for the vertigo in a couple of weeks.

I could have done without this 🙂 And, I am ecstatic to be alive with no deadly disease. I would prefer to have not lost my hearing (there’s now about a 20% chance I can regain it or part of it), but as things go, that’s a small problem. It’s taken me a while to find my equilibrium. I don’t quite have it physically yet, but I’m a lot better emotionally. I can work, fly, drive, do almost everything except dance (for now), and work out too hard. The vertigo comes back with a vengeance if I push myself at the gym.

When I facilitate the Reinventing Yourself Bof this year at AYE, I’ll be thinking about my work. Am I doing work that gives me joy? That helps other people? That leaves me in a state of grace?

None of us know how life will unfold. We can only keep working on our equilibrium and grace. I’ll be back to normal blogging and tweeting soon.

22 Replies to “Regaining My Equilibrium”

  1. Johanna,

    Wow, what a bizarre and awful thing you’ve been thru and are now going thru. I’ve never heard of such a thing, but no doubt, you never had either.

    I’m thankful — very thankful — that it’s not more serious than it is.

    What an irony that you are doing an AYE session on reinventing yourself. You will be your own best case study.

    You probably realize what a clever title “Regaining My Equilibrium” is. A sign that despite everything, you’ve still got your head screwed on straight.

    Thinking of you, with hugs.

  2. Wow – what an impact this must have.
    Thanks for sharing and all the best wishes for your health – hope you get better soon! (And hopefully the 20% come through at least partially!)
    — Michael

  3. Hey Johanna,

    I’m fairly deaf in the bass register. There are a surprising number of people who think it’s funny to say “Pardon?” when I tell them. I’m letting you know this so you can find a way to laugh when they do it; they don’t know any better.

    My dad is also deaf in one ear. The hearing loss isn’t a big problem for either of us; I can partially lip-read (the visuals are interpreted by my brain as clearer sound, bizarrely).

    I’m still hoping for your 20% though.


  4. Sorry to learn about your condition but I am relieved that it is not as serious as MS or brain cancer. I hope that you can regain much of your hearing. Take care.

  5. Oh JR! I’m so sorry to hear this! My eldest son became profoundly deaf at age 5 because of a congenital birth defect that destroyed part of his middle ear. I didn’t know he’d lost his hearing – he became so good at lip reading…. In time he recovered his hearing with the help of reconstructive surgery. I hope your 20% is actually higher and that modern meds can give you some help.

    Wish I was able to attend AYE this year. Wishing you and the team all the best.

  6. Sorry to hear about your troubles, but know that you are a joy & inspiration to us all. Wishing you the best.

  7. I really admire your positive attitude to this. Good luck with the physical therapy. Hope it all goes well for you.

  8. Hi Johanna,
    Virtual hugs from here for comfort and when we meet again I will try to speak to your good side 🙂


  9. hi
    sorry to read of your troubles. what a horrific chain of events. kudos for you for regaining your equilibrium and retaining your sense of perspective. you show us all a great way to be

    best wishes

  10. Johanna,

    I’m sorry to read about your ear problems — though of course, glad it is not more serious.

    Please be careful about falls as you learn to deal with it. Hopefully, that will be a declining risk as you regain function.

    I’ve lost a large part of my sense of touch; I’m often glad it was not my sight. But I tend to take my hearing for granted. My good equilibrium — for that, I’m always grateful, as it keeps me from harm on a regular basis when my legs don’t go where I ask them to go.

    Still, when ones situation changes, you rethink, retarget, retool, and if needed, restart. Failure may be an option, but giving up, never!

    I hope you get as much recovery as possible, and best of luck in learning to manage the rest.

    Hang in there with the physical therapy. It can consume a lot of time, but I’ve always found it worth it.

  11. I know someone who had hearing loss in one ear after going scuba diving. She gained back much more of her hearing than her doctor expected and credits acupuncture treatment for her recovery.

  12. Wow, JR, this is a pain! I’m glad it’s nothing more serious. I hope you quickly learn to effectively manage with this. Take care, be well.

  13. JR, that is really rotten luck. One of my oldest friends recently lost hearing in one ear from some kind of virus or something that destroyed the “hairs” in the inner ear, all in five minutes. It’s rare and there’s no recovering from it. Best of luck with your own situation!!

  14. Hey Joanna. I sympathize with you. I too have lost my balance through a botched labrythectomy. The doctor cut the wrong nerve inside my head and left me with no balance. I have to use a cane most of the time. I am happy that you are getting better. I went through several weeks of therapy to no avail. Bob

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