By Michele Linder
This started out to be a simple post to Connect, my home list on the SayWhatClub, but grew into something more upon receiving some news that was expected, but, nonetheless, sad. I decided to post my words here instead.
It all began with my watching a wonderful TED Talk given by Dave deBronkart, entitled, “Meet e-Patient Dave” . I wanted to share it with others. If you click on the link, make sure to turn on the subtitles, found underneath the pause/play button. They are to the right of the words: “Subtitles Available in:” Choose your language from the drop-down menu, as several different languages are available.
I’m a big fan of TED Talks. I find them inspiring and informative, but I also like them because they are caption/subtitle friendly. However, patience may be required, as it does take a few days for newly posted TED Talks to be translated/subtitled. Those adding this feature are volunteers. Usually a talk is available in English in just a few days.
At first glance, this talk, given by a man diagnosed with kidney cancer, might not seem relevant to hearing loss, but it is very much so. Dave’s emphasis on taking charge of what’s ailing you, and the need to search for answers beyond those that your doctor provides, is far-reaching. Patients ARE the most under-utilized resource in healthcare. Conferring with other patients (referred to as “the power of patient networks”) who have ‘been there, done that’, can lead you to some of the the most effective and cutting edge treatments available.
It’s amazing, the detailed information that e-Patient Dave found on the patient networks he came across. Information that cut through all of the less aggressive and less successful treatments that, had he tried, probably would have meant a quick demise. We can all benefit from adopting e-Patient Dave’s attitude and forcefulness where our health is concerned, and hearing loss is a health issue.
Speaking of “Patient Networks”, I consider the SayWhatClub to be one, as we pass on valuable information about hearing loss straight from our own experiences, but we also spill over into providing the emotional support and understanding that a person can’t find in a hearing world, among hearing people. Not even those who love us most know what life is like for us, unless they have a hearing loss themselves.
Dave also asks the question “Why is it that iPhones and iPads advance far faster than the health tools that are available to you to help take care of your family?“, and I found myself asking this same question in relation to being able to access information on finding the right technology and the right person to apply and program that technology to treat hearing loss. Why is it so hard?
One of the last stories Dave tells is about Kelly Young, a rheumatoid arthritis patient. (Kelly’s blog is RA Warrior. I’ve looked at it briefly and it’s a wonderful blog!) Coincidentally, Kelly has a daughter who “wears powerful digital hearing aids”. A large percentage of RA patients (40%) have no visible symptoms (sound familiar? Hearing loss is another invisible disability) which makes it hard to track the disease, causing some doctors not to believe a patient when they say they have pain. Kelly found, through her online research, a nuclear bone scan that can reveal inflammation. So she had one done. The radiologist report came back “No cancer found”, but that’s not why she had the scan. She asked her doctor if the report to have the report read again, based on her reasons for requesting it.
After some back and forth and repeated requests, her doctor “fired her”, saying “If you don’t want to follow my instructions, then go away.” This launched Kelly on a quest to help others receive better care, to take charge of their own data, and to insist on having their thoughts and wishes heard and considered by the doctors who treat them. I’ve had my own bad experiences with audiologists and doctors. I’ve question doctor instructions, ask about things we might try, and make suggestions that I think reasonable. The doctor’s response is to look at me like I have two heads.
“Let Patients Help”, the end message of Dave’s talk, is a movement I need no encouragement to join, as more “warriors” are needed to take their own raw data into their own hands and make themselves heard. Who is more motivated to make a difference in their disease, disability, or course of treatment than patients themselves? Seeking to make tools available that allow us to have more knowledge of things that directly affect us is always a good idea, no matter what ails you. This is taking responsibility for ourselves.
The last point of relevance I considered… if you look at the video in the right frame of mind — times other than when you are down in that dark place of panic at not being able to function as you once did. This is the place where nothing seems more frightening than the inability to hear. You feel hopeless at finding a way to live your life without sound. Your loss of hearing seems like the worst thing in the world. If you apply it to the whole scope of what might cross your path in life, it can put hearing loss into perspective. Though, you really can’t compare adversities. What is hard for one person doesn’t make what’s hard for another any less valid or troubling.
However, we are able to look at Dave’s disease. He wonders “What’s my mother’s face going to look like on the day of my funeral?” And, “Will I be around for my daughter’s wedding?” We take a bit of comfort in knowing that our hearing loss doesn’t threaten to take our life in a relatively short period of time, if at all. Or does it?
Many do allow hearing loss to take more than simply their hearing. Hearing loss leaves them isolated and low functioning, but it doesn’t have to be that way. We have a choice in the matter. In my mind, to live less of a life than you would if you had your hearing, borders on criminal.
In reading the “about the author” section, of Kelly Young’s blog, I learned of her purpose in becoming a warrior, and she also shares her personal information, point of view, and passion. Last, she gives us her private information, which reads: “Kelly lives in Central Florida with her husband and five children. Typically, a list of hobbies and activities would be given here to define the author’s life. Kelly’s list has been confiscated by RA. (It formerly included various sports and crafts.) Instead she now seeks less tangible ways to define herself: She is patient, honest, and kind.”
Hearing loss doesn’t have to confiscate one thing more than you let it. Life is so much more than what hearing. The sights, smells, feelings, and tastes of the experiences that you open yourself up to are many. And that’s the KEY: Remaining open! Constantly fighting the temptation to close yourself off by placing needless limitations on what you can do. It’s not an easy task, but personally, I feel a responsibility to constantly push back against those things that threaten to isolate me. I feel compelled to do everything I can within my ability. To do less seems a slap in the face of those whose disease or disability takes more from them, as on this day.
For Brian, December 20, 1955-July 29, 2011, who fought the good fight and will be sorely missed by all who knew and loved him.
OMG Michele, you have such a way to go straight for the heart and the brain. You make so much sense in this blog. I feel as though we should be grateful for what we have. However, like all things we experience in life, it all depends heavily on the individuals’ personality and tolerance for their hearing loss, an ailment, cancer, etc. I know a woman with pancreatic cancer who has outlived the stats because of her personal attitude. I really believe that attitude is everything. Keeping a positive outlook and perspective is what gets most people through.
However, I am certain there will be those individuals who disagree and feel that deafness or hearing loss is the end of their life. It doesn’t have to be.
Thank you for writing such an inspirational piece and for sharing these very important links.
pearl
Thank you, Pearl, and you’re welcome.
Great post! When I first started losing my hearing I was paralyzed with fear of the unknown. Being as deaf as I am now was unimaginable at one time. I feel less challenged and disturbed by my hearing loss now than I did twenty years ago when I could hear better. Funny, isn’t it? But I think it’s because the ‘unknown’ has been dealt with, and I’ve come to realize that being deaf is manageable. It is what it is. I don’t want it to define me.
I guess I was lucky in the way I lost my hearing… for those first years (through the end of high school) my loss progressed very gradually, though steady, and I didn’t experience real struggle (not to say I didn’t fake it a lot of times with my peers) until my senior year in high school. That year, I plunged into a depression, not even realizing that it was my hearing loss that drug me there. I skipped school for two solid weeks without my mother even knowing. I just couldn’t go to school… it was too hard, and I didn’t even know why. I worked my way back up, alone, but when your hearing loss is progressive, you face it again and again with each new level of not hearing. I’ve been down in that dark place more times than I care to recall. However, years give you perspective… as the song says ,”…time makes you bolder.” and you come to not dread being drug down into those dark places, as you once did. You’re better able to deal with the panic, because you’ve been there enough to realize that you learned some really valuable things there, in the dark.
And what’s a little hearing loss when an aggressive cancer can take everything from you? I’m able to “live” with my disability… my friend Brian was only 55 years old and lost his battle with pancreatic cancer yesterday. His four granddaughters (all under the age of 4) will never know their grandfather other than through the efforts of those who keep him alive for them. It makes me feel damn lucky.
Yep, “Attitude is Everything”, I’ve always said that! I felt the need to research pancreatic cancer yesterday and I watched the Last Lecture again (a comfort)… I don’t think I’ve seen anyone with a better attitude than Randy Pausch, and he lost his battle, as did my friend Brian. So, while attitude is everything, sometimes, for reasons we can never understand, it’s not enough. Sigh…
The Pancreatic Cancer Action Network had some wonderful survivor stories on its website. I urge anyone getting any kind of diagnosis to put on your armor, take up your shield and surfboard, and ride the waves of the net to find out all you can. Join a “Patient Network”. It could make the difference between life and death. For someone with hearing loss, it could mean the difference between simply existing or continuing to live the life you’ve always dreamed of. That contrast isn’t as stark or absolute, but when you check out of life due to a refusal to function, and your loved ones are forced to watch that slow decline, it can be just as painful.
Michele this is a post that I found inspiring and one that certainly touches all of us. As I watched e-patient Dave, all I kept thinking to myself was where were you a few years ago, as my mother was dying of colon cancer. I know that after reading what you wrote and listening to Dave I am going to get much more proactive in my medical care. Thank you for bringing TED and e-patient Dave to our attention. We all need to do as he suggest and get involved in our medical situations.
My hearing was discovered at 23 but they suspect it was started much earlier but so mild that no one picked up on it. I was in denial for a long time, when I finally was ready to try hearing aids, they were not of much use so I mostly lip-read and used a FM system as my crutch.
Now I find that I am who I am, regardless of my hearing or lack thereof. I try to advocate and share in order that others might not have such a tough road to go. There is life after deafness, we are all testimony to that.
I am also sorry for the loss of you friend.
Michele: thank you for writing this! I’ve worn hearing aids since age 5, so in reality all I remember & know is ‘aided’ hearing. I’ve had some hard lessons over the years in dealing with hearing loss, people and personal ability. One thing that I’ve truly taken to heart is: the more you know, the less victimized you’ll be. In this case, ‘you’ is me, but it could apply to anyone. I admire how you seek out information & share your take on what you’ve read about. It’s good to share information, especially when the sharing is done with a caring heart.
Thank you, Donna, for your condolence for my friend Brian. He will be laid to rest on Tuesday and services will be held at the high school, Clermont Northeastern, we both attended as teenagers. Brian was a well-respected religious leader in the community, was “The Voice of the Rockets” (announced sporting events at the high school) for twenty years, and headed up a Student Venture program at the school. I wish I could attend, but it’s southern Ohio, but I’ll be there in spirit. Brian also was my date for the 1973-74 CNE Homecoming… he was a senior and I was a freshman. He was one of the sweetest boys I’ve ever known.
I really related a lot of what Dave said, to dealing with hearing loss, and also thought Kelly’s RA Warrior website had ideas and themes that translated, as well. Sometimes it takes looking at hearing loss as part of the whole group of adversities to actually see it more clearly. It’s kind of like staring at a star and not being able to see it, but if you shift your focus and look at it indirectly, it becomes clear.
I had an early diagnosis, but the doctors at that time very likely said there was nothing that could be done… I was just left to my own to learn to cope, so while I had hearing loss from early childhood it was never mentioned again after that one doctor’s appointment. I had to figure it out on my own. Luckily, many of us learn to be who we are, even with little help or support, and can become that help and support for others. You, and many others long time SayWhatClub members, are a shining example of what life after deafness looks like!!
Thanks, Susan, that’s such a nice thing to say. Our club is filled with caring hearts (you included) passing along all we know, and are still learning, in order to make the journey easier for others.