Meniere’s Disease: A tale of Risk, Regret, and Redemption
I was never exactly free, but when I was a kid, I could go with the flow.
I went on adventures with my friends as we rode bikes and played games that stretched across the neighborhood. We would all meet in my backyard every day and play for hours.
We were the last of a dying breed. For better or worse, we were the last generation to know the joys of childhood without iPhones and iPads and the internet. It was a beautiful time.
But things have changed and I haven’t been able to go with the flow for a long time. After I was diagnosed with Meniere’s disease, my life became far more calculated. My routine and careful planning helped me get my symptoms under control. But it was at the expense of spontaneity.
I’m now far more introverted than I used to be and my memory is littered with missed opportunities and regret. It’s hard to think about all of the things I’ve missed out on. But it’s especially hard to think of things that I didn’t do because I was afraid.
Meniere’s disease can take so much from us. Even if you can get your symptoms under control, it never truly goes away. It lingers in the background of your mind and can affect your decisions if you let it, like I did. But life is short and it’s important to take risks. I just wish I had realized this sooner.
The problem is, with Meniere’s disease, everything can feel like a risk. Even the little things like getting out of bed or taking a shower. The fear can permeate your life in a way that persists even on your best days. It can cripple you. But it doesn’t have to be that way.
“A ship is always safe at the shore – but that is NOT what it is built for.” – Albert Einstein
Of course, taking care of yourself always has to be your first priority. Ultimately there is nothing more important than your health. But when an opportunity presents itself, sometimes it’s better to take a chance. To make the decision that maybe, just maybe, it’s worth the risk. Even in the face of uncertainty, fear, and possible consequences.
We only get this one shot at life. We can’t change our circumstances but we can choose to make the most of them. Just two weeks ago, I found myself facing this very situation on a trip to Maryland to visit my family. I didn’t know it at the time, but my brothers had planned a surprise bachelor party for me.
On that Saturday morning, my fiancée Megan woke me up early and told me that my brothers had a surprise for me. She had packed me a bag with everything I would need and I left shortly afterwards with my youngest brother Brett. I thought we were meeting our other brother, Kevin, for breakfast in DC. My terrible sense of direction kept the surprise intact and the next thing I knew we were pulling into a harbor in Annapolis.
Up until this point, for several weeks, my symptoms had been completely in check and things were good. But I hadn’t been on a boat since my Meniere’s diagnosis. I was really nervous it would trigger my symptoms. And I didn’t know what else they had planned for the day.
As we walked down the dock, the next surprise was waiting for me. One of my closest friends, groomsman, and former college roommate, was there too. We speak often but I hadn’t seen him in 3 years. I had no idea he would be there.
I’m not sure how it happened, but something clicked. In a moment of happiness, I decided to let go of the fear, and for once in my adult life, just go with the flow. We boated on the Chesapeake Bay, went tubing, and ate Maryland blue crabs for lunch. After a quick shower and rest at Kevin’s townhouse in DC, we went out to dinner and a comedy show.
By the end of the night, I was thoroughly sunburned and completely exhausted. I was very dizzy and felt the pressure building in my ears. My tinnitus was cranked up to 11. To be honest I’m not sure how I made it through the show.
But it was all worth it. I had an incredible day with the people I love, and Meniere’s disease can never take that away from me. Physically I felt horrible, but I also felt unstoppable. I was filled with gratitude. In all my years with this crazy illness, I had never faced my fears like I did that day.
I learned an important lesson, too. I realized that when the right opportunity presents itself, I’d rather be dizzy than deal with regret.
“Regret for the things we have done will be tempered by time. It is regret for the things we did not do that is inconsolable.” – Sydney J. Harris
I also learned that it can help to prepare for every contingency. Megan had packed me a bag with all kinds of medications and supplies to cover every possible outcome. If you take a moment to define your fears and analyze the worst possible scenarios, you can prepare accordingly, and release the fear.
See that’s the thing; even if you end up facing consequences or an outright failure, you will still learn something valuable from the experience. And in some small but meaningful way, you will always win, even if you lose.
So the next time you have the opportunity to do something amazing, take it and don’t look back. Meniere’s can take so much from you, but sometimes you just have to say “to hell with it”, and have fun.
I highly recommend taking a minute to watch this incredibly inspirational video:
23 thoughts on “Meniere’s Disease: A tale of Risk, Regret, and Redemption”
You sound much like me, Glen!! I get scared all the time, but I just keep going…will not let this nasty disease get the best of me. I always have all kinds of meds with me, sometimes, I sail right through an activity, but there are also times when I have to take the meds and climb into bed for a bit. Love your blog! Carolyn
Thanks Carolyn! I think as long as you prepare for all the possible outcomes, it really does make a difference on your mindset. It makes it a lot easier to go out and do things.
LOved your article. I have only recently been dx with it. Unfortunately I am 71 yrs old…so dizzy falling, blacking out is much more dangerous for me. Broken bones, confusion, head injury. So I am a lot more careful .
Hi Nancy, I’m glad you liked my article! But I’m also sorry to hear you were just recently diagnosed. Glad to hear you are being more careful.
This was the most amazing thing I’ve ever read. You wrote something that I needed to hear right now. Fear of having an attack has taken over my life. But you are so right. We can still enjoy life to the full if we let go of the fear. This is something I will have to practice but I’m going to try.
Thank you for such an inspirational post.
Wow Sue, thank you for saying that. I know how hard it is to live with that fear. I did for a long time. I still do to some degree, but I try way harder to take advantage of fun opportunities then I used to. I just make sure I have a plan for every possible contingency ahead of time, so if something goes wrong, I have a way to handle it.
Thank you so much for writing this
Your welcome! I’m glad you liked it.
I completely identify with everything you said, Glenn. Most of my regret has come from feelings that I’ve let others down because of this illness, but your words make me realize it’s really myself I’ve short changed. You’ve given me much to think about.
Hi Sue! That’s definitely a profound take away. I really like that perspective a lot.
Thank you Glenn for this story. It is quite timely for me, I had booked a flight to London to visit my best friend next weekend, but I recently had some vertigo attacks and I started to doubt my ability to make the trip. I was on the fence and learning towards cancelling, but I realize now that is just the fear keeping me from life. I will make the trip and I will prepare myself with medications and a calm attitude that I can handle it. And I will be with a friend who will look after me.
That’s great! I’m glad to hear you will be going through with your trip to London. I hope you have a wonderful time and that the vertigo stays at bay. But even if it does occur, you will still be in London,on vacation, and odds are the vertigo wont last the whole trip. Thanks for sharing this.
Thank you so much for sharing this. Congrats and Kudos to both of you >> Glenn and Megan, your new bride. 🙂 !! This is just what I needed to hear. Going to read this when the MD gets me down. 🙂 Good luck and best wishes!
Thanks Judy! And I’m glad you liked it.
I’m leaving this weekend for the mountains. I know we will be out on a boat too! A boat ride was my first trigger in 2009. My second was anesthesia on May 5th. I just recovered. But I’m going to the mountains and I’m going on that boat! Blessings!
Thank you for this nice reminder. Looking back I realize I have had more attacks when traveling due to food and stress. However, I have never let it keep me from living. Maybe my new goal should be how many countries can I throw up in. I have only become stronger through the years with much more resilience and truly not caring what anyone else thinks.
Hi Kristi, with a little bit of planning I’ve found you can at the very least address the diet issue while traveling. I wrote another article on exactly this: The Challenge of Going Out to Eat With Meniere’s Disease. But I also agree, over the years I’ve definitely become stronger and more resilient.
Johnny C Barrett
Wonderful story, thanks for sharing. I am a photographer with Meniere’s Disease, and I do skip a lot of opportunities. One I rarely pass up is an old abandoned bridge. I normally walk out on them, terrified of an ill timed drop attack. It is a great sense of accomplishment when I get home and review photos which others would think simple, but in my mind, I know I won the day’s battle with this awful affliction. I lift my cup of Earl Grey to all who keep pushing!
Johnny thanks for sharing that. I love the idea of reviewing your photos to remind yourself of the accomplishment. I’ve written before about creating art as a way to heal and cope. I would love to see (and share if you’d like) some of your photos. If you’d like, email me some of your art to Glenn@mindovermenieres.com!
This comes across as much more honest than most of your pieces. I know that you (like me) feel that you’re always trying to be honest, but sometimes the personal stories and anecdotes make the points more relatable. It’s something I’m trying to do with my own writing work.
So, well done! And I agree. I haven’t been able to afford any travel in several years, but when the opportunity strikes, I take it. Went down to San Antonio a few months ago to be with my nephew before and after his heart surgery. Had someone else drive one of the trips because I was suspicious of my ability to maintain equilibrium. I hate going towards the coast, it always messes with my balance, but I managed not to have any attacks on either trip. Won’t say I didn’t pay for the trips later, but that’s part of dealing with this damn disease.
Hoping the next time I get a chance to do something it doesn’t include hospitals. Hospitals freak me out. Or major surgery on a relative. But I’ll take it if that’s what lies in store. You have to live life or live with regret.
Thanks Anthony. Using more personal stories and anecdotes is something I’ve been trying to work on as well, but it’s not always easy. I appreciate the comment though, thanks man.
You are a rock star. I needed this. Thank you!
You’re welcome Eugenia!