Participant Page: Evyan & Robert

11%
$ 535.00
Raised so far
Of target
$
5000.00
Evyan & Robert
My Story
When you're dizzy, it's nice to know that someone understands. As Meniere's sufferers, Evyan & Robert have each other, and they also have VEDA!
Robert's Story:

I am a self-employed writer, film critic and teacher. I experienced isolated incidents of vertigo in my late thirties, but was not diagnosed with Meniere’s disease until the year 2000 or so, when I had more sustained periods of dizziness combined with tinnitus and hearing problems. The symptoms were difficult to live with, and I really limited my activities, except writing, for about four years. I tried different therapies and treatments, but none worked very effectively for me until I had endolymphatic shunt surgery in May 2003. My symptoms lessened gradually over the course of a year, and have been stable since then. I still have constant tinnitus, hearing loss, and some dizziness, but have only had one temporary period of vertigo in the last ten years.

In the early, bewildering days of Meniere’s, it was difficult to explain to other people what was happening, since the symptoms are hard for others to “see.” In May 2001 I traveled to the Cannes Film Festival and had a particularly violent attack while there; after that I really narrowed my horizons. I stopped teaching and stopped doing appearances on television, which I had enjoyed. When I was very sick I didn’t want to be around people much, and I took solace in small triumphs, like going out for a walk or driving to a press screening of a movie. A couple of times I found myself in mid-conversation with someone and felt vertigo, at which point I had to walk away with a hasty “goodbye.” If I was lucky I could get to my car and sit for a couple of hours, waiting for the vertigo to subside, without being overtaken by nausea. Most people have been understanding and sympathetic. Friends and family realize I need to eat a low-sodium diet, so they can and do prepare things without salt.

I met my wife Evyan in 2005, and we quickly found out that we both suffered from vertigo. She had not been properly diagnosed yet, so after about two dates I suggested she see Dr. Alan Langman, my doctor. He diagnosed Meniere’s in Evyan. Not only is it good to have someone who can understand the unpleasantness of vertigo, but we also maintain the same diet of low-sodium food.

It’s valuable to have a trustworthy central source of information like VEDA. When I didn’t know very much, I made the mistake of looking on the internet and reading random stories about Meniere’s disease, which was not a wise thing to do when I was anxious with my own problems. It would have been much better to have a reliable information source that focuses on solutions, advocacy, and positive action. I wish I knew about VEDA back then.

Robert's words of wisdom: Tell people what you have; tell people when you are experiencing symptoms. People actually want to help. Patience can be rewarded—it was in my case. I had some very bad times, but eventually we actually found the treatment that improved my life immeasurably. In the last decade I’ve gotten married, written books, traveled, given talks on cruise ships, gotten an overseas fellowship, and gotten back to teaching and public speaking. With Meniere’s disease, I don’t take any of it for granted.

Evyan's story:

My first symptoms occurred in April 2002. Without health insurance, my mother took me to an ENT, who prescribed a short course of steroids, leading to some immediate relief. Symptoms (nausea, vertigo) lingered for a couple of months, then subsided, then returned now and again. It was a difficult year. In 2003 and 2004, I saw 2 ENTs, one of whom said I didn't have Meniere's; the other wanted to prescribe an anti-depressant after talking with me for less than 3 minutes. A CT scan, an MRI, a neurologist...nothing definitive. There was an acupuncture clinic in my neighborhood, where I began therapy with David Lerner, LAc. Those sessions relieved some of the pain I experienced in my upper back, neck, and shoulders from holding myself so stiffly (for fear of falling) and helped me focus on feeling well. I credit David's practice with really keeping me sane during this period.

In October 2005, I met Robert, who had a monthly film program at the museum where I worked. It wasn't long before the idea of spending the night together presented itself. That was appealing to say the least, and it was scary. I thought, "What if I wake up in the morning and have to vomit because of whatever it is that's going on with me?"

Then I remembered that on our first date--The Birds, with Tippi Hedren there in person--Robert had asked me to sit on the other side of him. He had a "bad ear," he'd said. So on our second date, I asked him, "Do you have Ménière's disease?" He answered, "Yes. How do you know what that is?"

Well, I soon learned that the very meds I kept within arm's reach on my night table--Robert had them, too! Robert recommended his doctor to me; that was pivotal. Together this doctor and I whittled away at the possibilities. Finally I was diagnosed in the spring of 2006, more than four years after my first attack.

People want to hear you say, "Great!" when they ask you in that off-the-cuff way, "How're you?" Well, I am more cynical than I used to be and I am also more honest about how I feel. And I think I am more empathetic about others' stories. Meniere’s impacts my life, makes me feel more fragile and susceptible, and tired! Living with Meniere’s, I have to be more vigilant about my diet and rest, including resting my mind/thoughts, and not over-schedule my personal or work life.

VEDA brings focus to the overwhelming amount of information that's online. If you're feeling lousy living with a vestibular disease you want smart, thoughtful information from an organization whose mission is to help.

Evyan's words of wisdom: This isn't particularly wise, but please take care of yourself, by which I mean focus on self-care and finding joy. Eat healthfully and do treat yourself now and then. Moderation is important, of course, but you can live with this shadow that follows you.

And care for others, too: Talk about how you feel -- friends and others who like and love you also support you. Volunteer. And do exercise and move your body--out in nature, ideally. Since learning that Meniere’s is what I have, I've met 5 or 6 other people, including my husband and also a relative, who have it. You are not alone in this.

From Robert & Evyan: Please join us in our campaign to defeat dizziness by making a year-end contribution to VEDA today!

This Page is 1st out of the 1 fundraisers taking part in event.
George & Carol Lamb has donated $ 250.00
Marilyn Fisher has donated $ 25.00
David And Marite has donated $ 25.00
Richard P. Malloy has donated $ 100.00
Anonymous has donated $ 100.00

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