I was doing so well, feeling like I had beaten this thing. Turns out I was wrong, but not beaten.
I have Ménière’s Disease. For years it only presented itself as the feeling of water in my right ear accompanied by a constant ringing – tinnitus. I handled that well. Sometimes it was a nuisance, but not crazy-making. Some things made it worse, so I was careful to wear earplugs in loud situations and not take more than a few doses of Ibuprofen when joints hurt.
Then in June of 2013 I had my first vertigo attack. No idea what was happening to me, the floor was pulled out from under me, the room was flashing by, I fell to the ground and stayed there, holding on. It lasted a relatively short time, maybe 20-30 minutes. I finally got up and made an appointment to see my doctor. She said it sounded like Ménière’s, but I would have to see a specialist. No worries – first available appointment? August something. Ok. Just holding on until then. I was fortunate to only have a couple of relatively mild attacks before seeing the doctor at UNC. I say relatively because what I experienced later made all that seem almost fun.
Unfortunately, there’s no real cure for Ménière’s, just some management and the mainstream medical profession has their medicine cabinet and surgery. I tried a lot of it – steroids (never again), some kind of medication that’s meant to level out fluid levels in middle ear, betahistine, vestibular migraine meds. I even sat through getting a shot of steroids directly into my ear canal. Don’t wish that on anyone! Some things seemed to make things better, but only slightly and not for long.
The real kicker in my journey was one morning in early August when, as I was sitting on the couch checking e-mail, I felt like the cord had been cut to the elevator I was in and after dropping about thirty stories in .7 seconds the room began to tumble by faster and faster. I made my way to my phone in the kitchen, holding onto furniture, and called my good friend who was scheduled to come by. She arrived about 1/2 hour later to find me clutching onto the granite island in the middle of the kitchen, not able to go anywhere. First she helped me to the couch, but I decided that what I needed was to lie down with my cheek pressed against the cool wood flooring. I lay there cheek and hands pressed to floor holding on for dear life until I realised I might be sick. Not being able to walk and too much for Catherine’s back to try and carry me, she rolled my dizzy self onto a throw blanket and pulled me along the floor to the bathroom. I remember saying that while it was not funny at the moment I knew we’d look back at this and have a good laugh. We’ve had quite a few.
After throwing up and hugging the floor, shaking and sweating for at least 30 minutes with no sign of improvement Catherine called the ambulance. I spent the rest of the day in ER getting an MRI and being pumped full of drugs to calm the spinning and nausea. I only remember bits and pieces of the day. I thought I was there for 4 or 5 hours. It was actually 13. Needless to say, my world was turned upside down. For the next few weeks I didn’t feel competent to drive or go out much, not knowing when this might happen again.
After trying a few medications I started to look around for other ways of dealing with this. I was so fortunate to get connected with an acupuncturist, Taran Rosenthal. He was so empathetic, was able to get so tuned in and really hear me, both speaking and silently lying on his table. At some point during one of the sessions I came away with the understanding that I had a choice. I could be a victim of Ménière’s or a student of Evie. I chose that latter and have been studying ever since with varying degrees of success.
So my outlook started to change. This was not something that was happening to me because I’d done something wrong or because I deserved it or… This was my life and I needed to live with it, deal with it. I read everything I could find, joined groups discussing MD and told people I knew finding out that I was not alone, not so much because there were a lot of other people with Ménière’s, but that my friends wanted to help me. Sometimes to listen, other times to drive and help me cook, shop, whatever. I paid close attention to what I was eating and cut out caffeine, alcohol and anything high in sugar or salt. I did more meditation and didn’t move certain ways, being sure not to swing my head around and up at the same time, a sure trigger of at least a wobble or three.
The most important change was my initial reaction to a wobble. I learned that one possible cause for vertigo was a lack of blood flow and oxygen to the brain. This could be caused by a lot of tightness in the neck and shoulders, where I hold most of my tension. So as soon as I experienced a wobble instead of immediately raising shoulders to neck and putting my head down as if to protect myself from a blow, I started taking a breath, relaxing my shoulders and imagining my breath flowing up and down my neck. It was like doing dozens of mini-meditations daily. It started to become second nature, overpowering the previous hunching of shoulders and panicking. There were a few setbacks, but they were so minor. Then I spent 5 days in New Hampshire over Christmas where I received some kind of massage every day. I left there feeling better than I’d felt in months. Even the 38-hour trip back to New Zealand via Sydney Australia in mid-January didn’t get to me.
So it’s March 23rd 2014 and I’m sitting at a cafe on the North Shore of New Zealand, very close to where I live half the year and it hits me, a slight shift around me, a drop and I’m having a vertigo attack. It wasn’t terrible, but enough that I had trouble walking back to the car on my partner Richard’s arm. The rest of the day was rough, not because the attack got so bad, but because I was so discouraged that I’d come so far and found myself here again. There was one more relatively mild attack and then later that week I was back in the ambulance to the hospital. I retched up foam for a few hours, sweating, shaking, wondering at one point if I was going to die. My body temperature dropped to 34C. Normal is 37C. They were finally able to get the nausea under control and the spinning slowly subsided. It was only a 8-hour stay and I didn’t have the same awful drug hangover as the drugs were a lot milder. They even gave me tablets of both medications, one of them having been so effective for the nausea.
So why? Why was this happening again? I seemed to be on such a good run. It didn’t take long to figure out that my relaxation of the dietary and lifestyle rules had not served me well. The couple of ciders or glasses of wine for the past three (maybe five?) Friday evenings, all the black tea I was drinking and not getting the massages because they felt self-indulgent, were bad choices, but that was also the good news. They were choices I made, not something forced upon me.
Needless to say, I’ve had no alcohol, caffeine and very little sugar since. My massage appointments are kept up-to-date and my stress levels are dropping through lots of talking, meditation, creativity and not filling the bucket too full. I also try not to move as fast through life. I mean actually, physically. move… more… slowly. So far, so good.
Turns out that Ménière’s is my guide to my more skilful self, the one who makes better choices and lives more consciously, more deliberately. Could be a lot worse.
Why would I share this on a site about my art?
I look at other artist’s sites, read their books and articles, to find out how they got where they are or how they are doing on their journey. MD has become a part of that journey for me. I appreciate whole days in the studio, unfettered by the anxiety of wondering if I’m going to get hit with another attack. I am learning to accept my situation as it is instead of something more comfortable, easier to deal with. The slower more deliberate way I need to move through life is giving me a glimpse into patience. I’m not a patient person and I believe making really good art takes a lot of this virtue. I’m getting there out of necessity and learning to enjoy it as I slow down. Richard tells me that he thinks there are a lot of answers in my doing less and doing it more slowly. I think he’s right. And honestly, in comparison to 3/4 of the evening news, this is truly a first world problem.
If you have Ménière’s I hope this helps. If you know someone with Ménière’s maybe it will help you to be more supportive. Listen to their stories about the weirdness of their brain becoming unhinged and sloshing around in their skull making it hard to walk a straight line. Whatever you do, please don’t say that you understand because you get dizzy sometimes when you stand up. It’s not like that. Not at all.