Wednesday, August 16, 2017

There is Humanity in Lyme...Just Not Everywhere

There is humanity in Lyme -  like nothing you could ever imagine.  For many that have lived through the hell of this illness this will be very hard to believe.

Rest assured my Lyme Friends, I am not talking about the Doctors that dismissed you, told you it was stress, sent you to psychiatrists, or made you feel like a hypochondriac.  I am not talking about the things you had to do to get treatment, acquire the meds or find the funds to save yourself.  I am most definitely not talking about the insurance companies that denied you, made you fight with the last bits of energy you had to get better, or stole your last remaining funds on legal fees to get what was owed to you.  And of course I am not talking about the way people made you feel like you weren't sick or you should be better by now, or should be doing this treatment and not that.I am simply not talking about the fact that you have worked harder than most and fought with everything you have to get your life back, to be treated as if you have done anything but.  There is certainly no humanity on any of that. Please know I am not talking about the lack of humanity in most of this illness.

As you may know, the lack of human rights in Lyme was formally presented to the World Health Organization by an Ad-Hoc Committee for Health Equity in a report titled UPDATING ICD11 Borreliosis Diagnostic Codes in March 2017.  The following was stated in a supplement to the report: 
"There is substantial peer reviewed scientific research that suggests it’s a serious 
and sometimes grave mistake to deny medical care to patients with chronic Lyme 
disease.  If that research is correct, then adopting a policy that denies medical 
care consigns thousands and perhaps millions of medically ill patients to years 
of untreated suffering and bodily harm that might well have been avoided."     

Despite all of this I still claim there is a level of humanity with this illness that is far superior to most anything I have experienced in my life.  That profound example of humanity, humility, love and kindness comes from the Lyme Community in their treatment, care and help for one another.

Some patients are bed ridden, have chronic intense pain, extreme consistent fatigue and well, a host of other medical issues, far too many to mention here.  They struggle every day to exist and for some its a mental battle to keep trying to get better.  Others are financially burdened so they no longer can afford the treatment that gave them hope. Others lack emergency help or medical care because no one will try to learn about their illness.  But what is amazing is that in this community of Lyme Warriors are people who struggle every day to exist yet will sacrifice their own selves to help another who is struggling just a little more that day.

I have seen people from different provinces work to get someone a ride to a doctor because they are unable that day.  Many have stayed up late at night to talk someone through a rough time. They help with finding the right doctor, explaining symptoms, sharing solutions or alleviating a burden.  Many times I am convinced these people have saved others lives.

Beyond all of these amazing acts of kindness is just the simple character in which all of the help and suggestions are presented.  It is always supportive.  These people have no time or energy for negative comments.  There is never judgment; only empathy, sympathy and understanding.  When so much on the internet turns to horribly negative and sometimes evil comments, these people talk online with only kindness and caring, always.  There is an acknowledgment that we are all different, our challenges vary, the solutions are not all the same, but if we just support and help each other, we just might find our way.  True humanity.

My recovery and treatments have gone relatively well, compared to some.  I have been blessed, yet there are some days I am just not sure I can keep up this endurance test.  Knowing I have a community of people I have never met that understand me more than anyone else ever could, that will only help and support me, never judge and condemn me is an intensely powerful feeling.  I can only imagine what our world would be like if it was like this in every other aspect. We could heal, save and create peace like nothing else ever could.  It amazes to me to think what would be possible.

Early in the process, I prayed to God to give me the tools I needed to make it through.  Although my family couldn't know exactly what I was experiencing, they were given acceptance and sacrifice.  I was then reminded of the community of amazing friends I have that never forget about me and even sacrifice themselves to help me get treatment.  And then I was introduced to this community of Lyme Saviours; the final piece to know that I will not only survive this battle, I will thrive.

As strange as it is to hear myself say this, I have to admit, if I could turn back time, I don't know how much of it I would change.  To have experienced the love, kindness and absolutely perfect example of humanity is probably the most powerful life experience one could have.

These people, these Lyme Angels, this experience will forever change who I am, it has filled holes in my heart that I never thought possible and will forever motivate me to give as they have given.

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