SayWhatClub

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” and wanting to share it with others. If you click on the link, make sure to turn on the subtitles, found underneath the pause/play button, 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, as 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, since those adding this feature are volunteers, but 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, and 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!) who coincidently 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 the 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, so she asked her doctor if the report could be 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.”, which 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 and doctors, where I’ve questioned their instructions, asked about things we might try, and made suggestions that I thought were reasonable, only to be looked at like I had 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?  Learning to be responsible for ourselves and seeking to make tools available that will allow us to have more knowledge of those things that directly affect us is always a good idea, no matter what ails you.

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. A place where nothing seems more frightening than the inability to hear. A place that renders you hopeless at finding a way to live your life with little or no sound, making your loss of hearing seem the worst thing in the world that could happen to you – and 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, because 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, one that makes him wonder “What’s my mother’s face going to look like on the day of my funeral?” and if he’ll be around for his daughter’s wedding, and take a bit of comfort in knowing that our hearing loss doesn’t threaten, in most cases, 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, leaving them isolated and low functioning, but it doesn’t have to be that way.  We have a choice in the matter, and, 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 can be taken in through our ears.  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.