Monday, June 13, 2011

Day 22 - Just Another Lazy Day in Ottawa

Today was just going to be so darn easy - an interview in the morning and the rest of the day in Ottawa with my biking........just another lazy day at Cycle For Lyme.
Maciek and I drove to Gatineau, Quebec, to interview a one of the first people to email me regarding Cycle For Lyme, only days after I finally made the website public.  Within a couple of emails, I quickly realized that Trudy Belonoha and I (and our spouses) had lived very parallel lives. She in the Ottawa Region.  Me in the Toronto Region.  From the most detailed accounting of our strengths to fight Lyme, to the luck that we both share to have ended up with spouses that continued (and continue) to support us through the darkest and most frightening moments of ones life, the more Trudy conveyed, the more I saw of myself.
Once a doctor has told you that there is physically nothing wrong with you and that you are effectively crazy, where do you go?
At one point during the interview, Trudy conveyed an expression I have only heard come from my own mouth.  She talked about having this thing living inside her body.  Within second I was flooded with memories and emotions that I have been quite capable of suppressing and/or ignoring for many years.  However, I guess my brain will never allow me to forget the cold indignant response of my doctor of 12 years (at the time) when I tried to explain to him that I had this beast traveling around inside of me making me sick all the time, and causing me joint and muscle pain, migraines, constant fever, heart pain, pain in my sides, constant sore throats, constant sinus irritation, itching, pins and needles, eyes that literally ached, constant ringing in my ears, and goodness knows how many other things that don't need mentioning.  My doctors response was to literally start laughing at me and shaking his head, then proceed to explain to me that this was just more proof that I was mentally unstable and depressed.  At one point, he said that what I described was the craziest thing he had ever been told.  In saying this - by definition - my doctor had confirmed to me that I was the craziest patient he had ever had.  That is defining moment that I will always have to cherish.
The interview with Trudy was powerful.  To hear her speak of her husband Bruce, was my wife, Heather in every sentence.  Although no one knows more than I what Lyme disease and I have put Heather through, with every word out of Trudy's mouth, all I had to do was substitute the word "Heather" when I heard the word "Bruce" - and Trudy was telling me about my wife's life with a person misdiagnosed and living with (or slowly dying from) Lyme.
I understand that as a nurse or a doctor that in order to survive, all healthcare workers need to maintain an emotional distance from their patients or else they will end up in padded rooms themselves (and frankly, I know at least one that should).  I get that.  But when you have a patient that for well over a decade has been telling you, the doctor, about a set of symptoms that were discovered over 30 years earlier and that were discovered less than a 9 hour car ride from where you live, then I am of the opinion that maybe, just maybe, that as a doctor, you should take a few minutes out of your busy day billing OHIP and do a little research to see if maybe, just maybe, what the patient is describing has any medical merit and that the patient may actually not be crazy.
Trudy Belonoha is at most 100 pounds with wet clothes, yet is one of the strongest people I have ever met.  She has done what I was never even remotely capable of doing.  She was able to make her family doctor of many years understand that there really is a beast living inside, and not only does her doctor understand, he is doing what my doctor will never be able to do - he cares.  Although I have no doubt that there are many doctors that do care, what I also know is that too many are afraid to speak up for fear of the consequences, given the war on doctors treating patients with Lyme. 
Heather and I had one of the best talks that we have been able to have in a long time today here in Ottawa.  Heather has had to do so much to provide the necessities while I have been on the couch asleep for well over a decade.  Heather has had to go to work and maintain a smile on the outside, while she has been crying on the inside.  In November of 2010, I took Heather to see my doctor so that we could try and find closure, as well as make him understand how misdiagnosing has effected our lives. However, within minutes, Heather got to see for herself what I had known for years.  That my doctor is a small person with little or no respect for those that he is entrusted to "care" for and that in the end, my doctor is simply in it for the money.  You see, a couple of days after the indignant visit, my doctors office called to complain that the health card they had on file for Heather was expired and that she had to provide current information.  Apparently, after what we had discussed with my doctor - his priority was to try and double bill for the visit.  That is what almost 2 decades of misdiagnosing my life was worth.  That is what Heather has been through was worth.
The day I met my wife, I became the richest man of all.  Immensely personal, yes, but sometimes things need to be said in order to wake up those that are sleeping in the back rows.  And maybe, just maybe, a doctor will actually read this and will learn something about all us crazy people with Lyme disease.

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