That headline probably sounds like the dumbest thing anybody ever said, doesn’t it? In truth, though, I mean it as a profound compliment. Let me explain why.
Today is LiveStong Day and it’s also Susan Komen Race for the Cure Day here in Denver. Earlier this morning, roughly 50,000 people participated in the Race for the Cure over at Pepsi Center, and annually there are about 130 such races worldwide. For context, here’s the Wiki intro.
Since its inception in 1982, Komen has invested nearly $2 billion for breast cancer research, education, advocacy, health services and social support programs in the U.S., and through partnerships in more than 50 countries. Today, Komen has more than 100,000 volunteersworking in a network of 124 affiliates worldwide. As of March 2011, Komen is listed on Charity Navigator with the site’s highest rating of four stars. According to the Harris Interactive 2010 EquiTrend annual brand equity poll, Komen is one of the most trusted nonprofit organizations in America.
Cancer is a horrible disease, and it’s one I take personally. On November 8, 1984, I stood by my grandfather’s bed in Forsyth Memorial Hospital and watched him draw his last breath. He and my grandmother had taken me in at the age of three and raised me as their own son and he was, in every meaningful respect, the only father I ever had. He had “beaten” cancer twice before – colon, then lung – but the third time around it got to his pancreas before they caught it. At that point it was just a matter of time. It wasn’t pretty to watch his decline knowing there was nothing we could do but make him comfortable and “prepare ourselves.”
So no, I don’t mean it’s good when people get cancer and I certainly don’t want it myself.
Instead, I’m thinking about my own personal battle, one that some of my friends know about but until now I have not made public. Three or four years ago I was diagnosed with what my specialist calls a “progressive vestibular disorder.” In a nutshell, it’s a malfunction of the inner ear that affects my balance. That doesn’t sound so bad at a glance, probably, and it’s hard to describe how it feels. But you know that dizzy, out of control feeling you get when you’ve had too much to drink? It’s sort of like that, only it never stops. It’s not so bad some days, although I can always feel it at least a little bit. Other days it makes it difficult to do anything more aggressive than lay on the couch. And I know from experience that I can’t describe the overwhelming full-body sickness that results when you can’t really orient yourself to up and down properly.
It isn’t fatal. However, the doctor told me up front that people with a similar condition, Meniere’s Disease, have an extremely high suicide rate. It’s hard for me to compare what I have precisely with Meniere’s, and no, this isn’t a threat to off myself. But the physician told me this for a reason. And on the really bad days, I have no problem whatsoever understanding why.
The doc made sure I understood three other things.
- There’s no cure.
- It’s going to get worse.
- There’s not a lot we can do to manage the symptoms, either.
This is where I begin to envy those with cancer. And please, understand that I am praising everyone associated with the battle against all the forms of the disease that claimed the man whose I name I now bear.
I envy the fact that you have hope. In many cases, those with cancer have a shot, maybe even a good shot, of beating it.
I envy the fact that you have a vast, highly advanced medical/technical research program backed by extensive funding dedicated to eradicating the disease once and for all. It is not unreasonable to think that at some point, perhaps even in a generation or two, we as a society and as a species will have beaten cancer pretty much for good.
Perhaps most of all, I envy the community of support that has been built around the fight against cancer. There are programs for fighting it and surviving it, and there are programs for easing the final days of those who lose their struggle. As we see with the Komen Foundation’s activities, as well as those promoted by organizations like the American Cancer Society and Lance Armstrong’s LiveStrong.org, there are hundreds of thousands, perhaps millions, willing to dedicate their time, their physical and emotional energy and their financial resources to supporting those with the disease and celebrating those who have beaten it.
In other words, I envy that you don’t have to walk that road alone. There are those who know what you’re going through, those who can counsel you and empathize with you and lend an arm to steady you if you stumble.
I, like everyone else out there, have a battle or two to fight and I’m grateful to those who support me. I hope to hell I don’t sound bitter, because I’m not. I hope I don’t sound like I’m trying to hitch my small little wagon to something larger in a bad case of self-indulgence, although I can understand how some might see it that way. And I’m certainly not suggesting that society should throw as much money at my disorder as it does things like cancer and heart disease and even HIV. Lots of people suffer from those afflictions and what I have is pretty rare. You’d have to be stupid to overprioritize something as far down the list as vestibular disorders.
I hope, instead, that I’m managing to frame this so that it’s clear how much I appreciate the doctors, the researchers, the fundraisers and organizers, the participants, the family members and friends who stand in support of those with cancer.
I’m just overcome by all those pink ribbons today. I can’t help thinking how wonderful it would be if everyone who gets blindsided by a crippling disease were fortunate to have the same kind of infrastructure to draw on. I freely admit that there’s a selfish part of me that wishes I had that, too.
I have had Meniere’s for 8 years and the doctors are holding the vertigo down . There are many different kinds of meds out there and the only one that helps me is Transderm V . All other have failed . Don’t giv eup hope there are some possibly great meds in the works .
Elana and Keith: I appreciate the support and well-wishes. I also offer my sympathies to both of you. Fingers crossed for all of us.
As a cancer widow (2.5 months ago), I totally see where you’re coming from. I hope that they find some way to make it more bearable for you.
Ask Samuel Smith if he would like to know how I have controlled my menieres affliction ( had it since 2005 ) he is welcome to contact me through scholarsand rogues as I have left my email address with them. Not a gimmick and I’m not selling anything just trying to help. Alternatively go to menieres.org where there are alot of very nice people ( alot of them in control of their symptoms ) who will be happy to help anybody who is fighting this beast called menieres.
I too have the disease called Meniere’s. It is a pretty rotten thing to end up with but I really do believe, like with all things life hands you……. it is all about how you handle it. I was diagnosed in 2006 and have to admit it was very scary in the beginning. No, there is no cure and yes, it does get worse in many aspects but I certainly do not wish I had Cancer or some other more famous disease instead. I have lost almost all the hearing in my left ear but I hear just fine with the right. There are at least some reminders each day that the demon lurking in my vestibular system is still there but I just tell people that I am a “Dizzy Bit#*.” When it gets very bad and I have what I call an episode, I have worked out a treatment with my Doctor that either stops it or knocks me out for several hours. HOWEVER, I WILL NEVER LET IT CONTROL MY LIFE!!!!!! This year alone I have traveled more than Twenty Thousand miles and enjoyed every minute of it. I surround myself with supportive friends and family and work each day with some of the most special people in the world. My biggest word of advice to you is LIVE! Stay away from those support groups and websites where people sit around giving advice and feeling sorry for themselves. Work with your doctor on what works best for you and then move on the best way you can. Laugh, Laugh, and Laugh some more, it truly is the best medicine. Spend your days with people who make you laugh and tell them often how much you appreciate them!
There is hope on the horizon about meniere’s disease. The University of Washington and Johns Hopkins are working on devices that will greatly improve the lives of Meniere’s patients.
There also seems to be more publicity about this disorder then ever before which is great! So hang in there things will get better.
Jeanne: What a remarkable attitude. I try to bring as much positive energy as I can to the challenge, but I’m nowhere near as good as you are. Thanks for the reply.
David: I don’t have Meniere’s, although I reference it because apparently the effects are similar. I get the impression that, as it stands now, there’s more they can do for Meniere’s and that’s great news. I wonder if the things you’re describing would work on my specific condition. Do you have any links I could look at?
i found your your column regarding meniere’s disease via a web search using the terms “meniere’s” and “suicide”. though the column is now six or so months old, the topic is timeless. coincidentally, i was recently talking with someone contrasting cancer research and research into meniere’s. i stated that the rate of suicide among those with meniere’s was among the highest identified in a study of various maladies. my friend challenged me on that assertion, so i was trying to find studies that addressed the issue. it was actually in a medical journal abstract, but so far no luck in finding either it, or related information. i’ve been struggling with the condition for over 25 years, and surely there must be others who have had it even longer. over the years it’s taken numerous changes in direction, so to speak, but it has remained debilitating. as one might expect, at some times it’s more difficult to deal with than it is at others. probably the reason why the suicide rate is so high is that there’s never any relief, only days that are worse than others. yet it never directly takes one’ s life; only the person who has it does that. to all who have it, stay strong. suicide is only your way out. those whom one leaves behind are then left to carry on with their own difficulties as a result of your actions. god knows, though, some days are awful, and one can’t help but think about drastic solutions as being better than living another year, five years, twenty-five years like this. maybe with any luck you will get cancer, and that’ll take you out after the valiant battle one reads of in obituaries — gallows humor sometimes helps.
Thanks for commenting. I simply can’t imagine what you’re going through. I keep hoping for a miracle cure….
After reading this article, I realized that I’m not alone (in feeling this way). I, too, was doing personal research and typed it “Meniere’s and suicide”. I was diagnosed when I was 15, and have had it for almost for 7 years. It’s hard. I’ve coped by shoving all my feelings and whatnot about it into the back of my mind. Everything started resurfacing once I started getting severe vertigo attacks. I can’t really tell people how all if it makes me feel. It’s hard to express how the disease makes me feel. And I absolutely hate it when people throw pity parties, or tell me that someone out there is worse off that I am ( I KNOW), or that they’re ‘sorry’. Not to mention, I can’t deal with any type of support groups for Meniere’s and depression. It’s just frustrating at times. Everyone suffers differently. Everyone has their own way of coping with Meniere’s. Sometimes those ways are frowned upon by others. Like nowadays, I cope by blasting music (stupid, I am aware), reading nonstop, or my running. I can’t sit and talk to people about it. I need to get my anger, confusion, and whatever else there is out of my system.
But sometimes doing all of those things aren’t enough. Reading about the progression of the disease is kind of… frightening. I didn’t know that the suicide rate was high. Didn’t know that anxiety and depression were tied to it either. But it all makes sense now. I guess it’s nice to know that I’m not the only one who has had suicidal thoughts.
I gave up on hoping for a miracle cure. Currently, I’m working on accepting that it’s there and only going to get worse.
Masha – it goes without saying that I empathize. It’s something that you can explain, but there’s no way of making people understand. Before this condition hit me I couldn’t have understood it, I know.
I haven’t been to any support groups. I imagine that for some it’s helpful to have someone you can simply talk to who gets it, but as you say, that probably doesn’t work for everybody.
Stay strong, and thanks for commenting.
I’m encouraged and saddened to see so many people like myself with this disease. I found this site like many of you by typing in menieres and suicide. I have suffered with this for over 4 years and recently it has gotten worse. I’m dizzy daily now and no medicine seems to help. I’m only in my early 30’s and I haven’t been able to work for past several months. Just today I had a steroid shot in my middle ear but already I feel the dizziness effects. The Dr said that I would need surgery if this doesn’t work. Not too long ago when I was working I had been driving home when I felt like the road flipped upside down. It was scary I immediately pulled car to side of the road. I hate this feeling, and have considered suicide. I don’t want to live like this the rest of my life. I wish all of you that suffer from this like me peace.
I was researching suicide and Meniere’s and came across this article. My husband succumbed to his Meniere’s disease by taking his life 7 weeks ago. It is very difficult for me as the surviving spouse. I feel that I could have been more supportive, compassionate and my heart is broken with deep sadness that my husband was so desperate as to take his life. I wondered if there is a correlation between suicide and Meniere’s and evidently there is, though I doubt there have been any studies. If so, perhaps more attention would be paid to this disease as it robs people of a functional life, of their personalities and it causes tremendous anxiety and depression. I wish there was something I could do to bring attention to this, but without statistics and studies, there doesn’t seem to be much. My husband lost his battle and now my daughter and I must go forward without him. But I feel cheated that this disease caused him to take his life.
You have my profoundest sympathies. I wish there were something I could say, but I know better. My guess is that “desperate” is precisely the right word. I imagine he held on for his family longer than he would have had he been alone.
When your inner ear goes on you it’s a torment that’s just about impossible to explain. I hope that some day we’ll find cures for Meniere’s and for this damned thing I have, as well, but I fear it won’t be until I’m long gone.
Please, be well.
thank you for your response Samuel. It is comforting to me to correspond with others who suffer from this disease.
My heart goes out to all of you, it really does. I’m 54 and I have Meniere’s. My first episodes occurred when I was in my early 20’s, resolved and didn’t reappear until I was 40. It took 4 years before there was a diagnosis that referenced autoimmune disease and an effective treatment regime could be identified. During those 4 years I lost most of the hearing in my right ear and developed a panic disorder, major depression, etc. It took a while to get me stable, and then I had about 10 years with no symptoms. My husband started a protracted affair after that and I started having symptoms on and off, and the cat was really out of the bag last Fall to accompany the inevitable divorce. I subsequently was downsized at work and decided to resign. I hope to be better with less stress in my life. That is the cautionary tale I have for all of you I guess. Watch your stress (which absolutely makes it worse), love yourself, take care of yourself, get treatment (including mental health care- my panic attacks that were triggered by my vertigo, triggered episodes of vertigo- pretty twisted, huh?), live in the moment. We do have better treatment options than we used to, and much better understanding too, even though the big bucks don’t fund efforts to help us. I’m happy it’s not 1983, when I was first diagnosed with Meniere’s, put on a low sodium diet, given Valium and told there was nothing that could be done.
Hello there I hope this message comes through
Amongst other things I have Menietes . I live alone and had to stop work .oh boy I often have enough . I live alone amd my parents’ are about to turn 80 . Believe me I am lucky that I have a great Mum who has had balance issues since she was 13 BPV . At least she can empathise the room spin ( she has No loss of hearing as I do. ) or tinnitus but I am blessed she can empathise .
All I can say is that I’m glad I’m not alone in the nightmare called Meniere’s.
Frankly, this is case where I wish no one had it. Better just me than a lot of company.
To Cancer Envy: I can relate…had metastatic testicular, lungs and abdominal lymph system. 4 course chemo and nasty surgery. I would rather have that again as awful as it was than my current bilateral vestibular nerve damage. This truly sucks. Y’all hang in there.
Miners disease makes me no longer want to live. I have no quality of life. I can’t do things with my kids and I can barely work 3 hours a day. I am so done with this. The humiliation of going in public being off balance like I a, drunk. I am done
I understand how you feel. Most people take being able to stand up and walk straight for granted, don’t they?
And I get wanting to give up. The thing that keeps me going some days is that there are things I want to do yet, things I CAN do still, and I want to make sure I wrong all the life I can from my relationships. You have kids. Don’t lose sight of what you mean to them.