Our Silenced Heroes of Hope

It’s a difficult situation for our brain to be told there is nothing that can be done to remove pain or illness from the body. This seems to be true whether the condition is terminal or not.

Many of my friends speak of a grieving period. The word ‘period’ is key there. It means at some point it ends and we move on. I have seen this in my terminal friends as well, even if they did not have much time left on this earth. They seemed to go through those seven stages of grieving, but at some point, even if it was just before they died, they seemed to have found some peace. I grant you, I tend to hang with folks who seek some peace and serenity in their lives, so I can’t say this is true for everyone.

The brain, instinctively, is driven to survive. For those of faith or intellect, the brain is our worst enemy in this regard. It will lead us to try treatments, even invasive ones, which offer no hope of improving our situation and, in some cases, might make our situation worse.

In the states, you can’t really trust all doctors to ‘do no harm’.  I visited a neurosurgeon once who suggested surgery and I asked one of my standard questions on my list: ‘Do you believe this is the best option to treat this condition?’  His response was honest. He explained he was a neurosurgeon and this is what he is ‘paid’ to do. If I was not sure of the solution, he was happy to let me do further research to determine what was best for me.

Another area doctor’s seem able to do harm is when they don’t believe their patients. Without a written diagnosis, most doctors cast aside the patient’s experience.

My GP is a pretty wise about some things. He suggested I not travel round the world finding the root diagnosis of my condition. Firstly, I’m not really able to do that (smiles) and second, it will not change my situation nor treatment.  He is right on both counts, but there is one condition I have that would really benefit from a diagnosis. It is rare, but not as rare as once thought, and it makes surgeries more concerning for me.

I would have to travel quite a distance to get the diagnosis, the time required might put my job at risk and I’m not sure how to care for mum while I’m gone. So I have not made the trip to get the diagnosis in writing.  I’ve spoken to professors there and my last surgeon very much believes I have the condition, but all of that is really meaningless to the next surgeon I encounter.

I understand why they feel this way. Lots of folks who have aches and pains or symptoms look to the internet for a diagnosis. Then, without sometimes even speaking with a doctor, or even after having spoken with a doctor who assures them they do not have that condition, they decide they really have it.

Since most doctors only have 10 or 20 minutes with us, I’m sure it’s hard to determine which is which. But negating a patient’s experience because it is not on paper is like negating an employee’s 20 years of experience doing a job (which many companies are doing today too – without the diploma you’re simply not qualified, regardless of the years of experience).  All of this is short-sighted and bad for folks on both sides.

I have had doctors promise to do only a minor procedure, then decide, while I am out cold on a surgery table, to do more than discussed, even if it were not necessary.  This is the right of a doctor, and they do it under the guise of the ‘benefit is greater than the risk’.

This is, I think, part of the ‘arrogance’ PWD’s, and chronic pain and illness sufferers find so irritating about doctors. There is so much wrong with the system that this ‘arrogance’ extends (and has for a long time) far beyond the doctor-patient relationship.  There are treatments out there, great ones, that simply can’t get traction because they are presented by the wrong party. It leaves us, who are desperate for solutions, trying to tell the snake oil salesmen from the heroes silenced by our medical system.

These ‘silenced’ heroes don’t pull up in wagons selling amazing elixirs. They don’t run infomercials on late night television and they don’t promise salvation for cash.

I was hesitant to write this post for fear it would lead some to invest in ‘snake oils’. Please don’t. If it sounds too good to be true and it costs money and only one person in the world knows about it — you probably ought to take a pass…

I’ve heard and seen several of these solutions work. People I care deeply about who were told they have a few months to live are still walking (yes walking) the earth today many years later.  For brevity’s sake, I will only share a couple of well-documented examples today.

My Uncle, Grandma’s Son

When my uncle was a child he got polio. My grandmother took him to many doctors and they said there was nothing they could do, he would likely need to wear braces to walk for the rest of his life.

My grandmother, an avid reader, began to research polio on her own. (Magazines were the internet of her day.) In the process, she came upon a treatment being performed by a woman my grandmother described to me as a nun. It involved wrapping excruciatingly hot blanket compresses around my uncle’s legs and some exercises. My grandmother believed the treatment saved my uncle from wearing the braces so many with polio acquired.

I know now the woman was Sister Kenny.  Sister was a title for chief nurse in the Australian Army Nurse Corps at the time. So she was not a nun as Grandma thought. She was also self-taught. Grandma used to say the only reason Sister Kenny’s methods were not adopted was because she was a woman.  If a man had discovered it, fewer polio victims would have worn braces.

Grandma was, sadly, probably right. Not just a woman, but a nurse (not a doctor), and self-taught (no diploma). The reality is her treatment resulted in an 80% recovery rate, far better than any other treatment of the time. Her treatment was relegated to ‘unorthodox’ status in the states until 1941, when its effectiveness could no longer be denied.

Fermilab – Land of Physicists

Fermilab in Batavia, IL, used to offer a special, very effective, less traumatic treatment for various cancers at their Neutron Therapy Facility. I took a tour once of the facility and they indicated it was not used as often as it could be.

“Why,” I asked.

Well, the guide became very careful about what he said. If I got the jest, Fermi isn’t a pharmaceutical company, isn’t part of the ‘process’ and doctors have no incentive to refer patients to them.

Today, their Neutron Therapy Facility is ‘temporarily’ closed while they look for a new “partnership with a medical provider in order to resume offering of neutron therapy.”


Neither Sister Kenny decades ago, nor Fermilab with some of our most amazing thinkers behind the scenes, were or are snake oil merchants.  They have real solutions that don’t fit the medical profession’s old nor current layout. They are silenced heroes of hope (or worse decried, perhaps at best ignored) while folks who are suffering could benefit from what they have to offer. How many more silenced heroes are out there?

Lots. From neighbors building prosthetics in their garages for their neighbors to who knows what else. It’s reasonable to be cautious, it makes sense to do research and, honestly, if these folks are doing this from their heart, the cost shouldn’t cost an arm or a leg (literally or otherwise).

These folks aren’t seeking out victims, they’ve been moved to find a solution that works for folks like us. Most of us are on a tight budget, and they know that…they don’t want us to sell our souls; they want to breath some life back into us…take away what ails us.

There is no trickery, they are happy to share what they know.  There is no secret book you must buy first; they are happy to answer our questions, listen to our needs and modify as best they can accordingly.

Sister Kenny traveled the world demonstrating her techniques. Their uniqueness created skepticism, but many who spoke to her realized quickly she knew what she was doing.

It can still hard, though, to figure out the quacks from the saints.

Grandma said my uncle’s doctor considered her efforts with Sister Kenny’s techniques abominable. She did it anyway and simply stopped discussing it with him.

Closed minded physicians which are quick to ‘poo-poo’ non-standard concepts shut the doors on these discussions.  It’s quite possible, had her doctor had an open mind, they could have discussed ways to ensure the execution of the treatment, at a minimum, did no harm. Even my GP doesn’t want to hear what’s on the internet. It doesn’t me I don’t look there, it just means I have to find someone else to discuss the pros and cons with. Doctors can, and should, do better in this arena.

When patients feel their doctor doesn’t support non-traditional treatments, it doesn’t mean they don’t pursue them, it just means they stop speaking to their doctors about them. Now add prescriptions to the mix. The patient is left to sort out what is safe to take and what’s not given their other treatment options the doctor doesn’t want to discuss. Doctors become frustrated their patient is not doing things as directed and tend to shut down as well.

If insurance companies allowed patients more than 10-15 minutes with a doctor and if doctors would listen to patients’ questions about alternatives, a more viable discussion might be possible. There are snake oil salesmen out there and doctors can often clearly identify them and explain why it will not work. But if doctor’s position is they’re all snake oil salesmen, then their opinion is no longer of value.

An alternate approach is for a doctor to outline the pros and cons of the treatment (just as we’d hope they do for any treatment they recommend).  If there are serious concerns, we would know. If there is no basis, we would know. They can’t keep folks from choosing quackery over real hope, but they can be more informative about these options and their potential benefits and risks.

So don’t stop looking for your silent hero.  Do sop around for a doctor who is willing to explain things. It’s foreboding to change up doctors, I know.  You have to go through quite a few things all over again, many times more than once, until you find a doctor that really participates in your care.  It took me two years to get mine where they are today, and I had to switch out quite a few, but it was so worth it!

If you’d like more information on Sister Kenny or Fermilab, see the links below:

The O&P Edge, Miki Farley, “Sister Kenny: Confronting the Conventional in Polio Treatment“, November, 2008

Fermilab Neutron Therapy Facility

 

 

 

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