 For those of us who are 'LymeMom's' - we have a collective resilience, intelligence, warmth, sphere of influence, empathy, passion and courage - which I believe will be integral to meaningful change for not only our own precious children, but for all Lyme sufferers in Canada and worldwide. In the past few days I've heard from several LymeMom's who are working hard to advocate for their children and at the same time - in the very midst of their struggle, they are reaching out to help others. I’ve always felt that when there is a pervasive atmosphere of suffocating darkness, hopelessness, apathy or denial – pitch black, and then one little candle is lit – everything changes. In the blink of an eye. One tiny, courageous little beam of light – is very, very powerful. When that little resilient flicker is compounded by others, it becomes, stronger, more powerful, eye-catching and indeed the flicker quickly transitions into a powerful beacon. As the flame burns brighter and stronger, the cold, numbing, isolating darkness is suddenly replaced by Hope, a warmth, a clearer vision, a path forward – perhaps a small path, a narrow, uneven path but never in history, has something historically important ever changed, with so much at stake, without the raw grit, determination and courage of the light carriers, the light seekers and the light followers – pioneers compelled by righteousness, indeed a call – willing to dare step onto the path where only a few have gone before. And so, we go, we move forward together - for the sake of our children and future generations; cautious, optimistic, terrified, determined - we cheer each other on, we wipe each others tears, we advocate for others, for ourselves. We pick up the phone and say 'I am here for you, you are not alone'. We laugh, we weep, we push, we wipe away tears, we hug, we Hope. Because, we must. We will overcome and the Lyme Mom army will only continue to grow, unite, strengthen and multiply, until one day..we will triumph. Sue Faber - LymeMom, Co-founder Lymehope #lymehope, #lymemomsunite 
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 Please watch Madeleine's speech at the National Lyme Federal Framework Conference.
Her talk starts at 1 hour and 33 minutes. 1hr33min Letter to the Minister of Health Hope is dangerous. There is so little of it and losing what little there is, over and over, is devastating. To be unrecognized, invalidated and unhelped by one's own society is soul searing and defeating worse than the disease. My whole family has been devastated by repeat infections of tick borne disease. There has been no validation or treatment beyond the first diagnosis on my daughter, at age 5 with a tick and bullseye rash present. Symptoms have been ineffectively and inappropriately treated now and then, often after a diagnosis of a mental rather than physical disease, leading to iatrogenic suffering on top of what the disease inflicts. I have watched my son and daughter in backward growth, devolving rather than developing, suffering greatly the whole time. Our lives are almost at a standstill. Those of us living with Lyme and co-infections for decades, identify with comparisons to lepers. The New Lepers. That has gone as far as having a dental hygienist refuse to clean my teeth. It would take a long time and considerable effort to describe all the ways in which (and to what degree) we have suffered and continue to... It feels like a waste of time and of the minimal energy that we have for the basic tasks of living to attempt to convince people who apparently refuse to see or hear us. We do not have the wealth required to go out of country to seek treatment. I cannot help my son and daughter to get relief, to regain their health and their lives and I am getting too old to do so. The pain I feel when I see how much they suffer, how little life they have, how limited their future, and realize again how little I can help them, is a pain that is almost impossible to describe, a mother's pain. What will happen to them, to us, when we cannot maintain ourselves and our lives? Will my family join the homeless? It is a nightmare for a parent... My country, the medical profession in fact the entire system has let all of us down, betrayed us, abandoned us to are painful fate. There are many others, ethnic groups like First Nations, now also the great number of addicts who began as patients, taking the prescriptions they were told they must take only to end up vilified and abandoned, who have suffered a similar fate. This does not nullify our suffering or all the potential, the LIFE that we have lost. We had hoped, after the Conference last year that I participated in, that a Framework would be created that WE participated in meaningfully. This does not seem to us to be the case at all. The amount of money going to a loosely defined goal of 'research' and no mention of help for those presently afflicted, feels like a betrayal or more of the same denial and and tossing aside that we have lived with for so long. Compared to very rare diseases like Zika, that have what seems like vast amounts of money given for research, treatment etc., it feels more like a slap in the face to the thousands of us whose lives have been destroyed. There is nothing that we can see that would help those of us so severely affected, not in time, not before our lives end in one form or another. Despair is a dangerous state. Will we vanish into the penumbra of institutions or homelessnesss, our lives effectively lost? As I said at the end of the Conference, did we not learn from the AIDS/blood scandal? We have been told at times that we can donate blood so the blood supply may once again be contaminated. There are people living full lives now with HIV who would have died back then before research, treatment and support that occurred after AIDS was fully recognized for the ravaging deadly epidemic disease that it was. That is true of the many thousands of us ravaged by tick-borne disease, invalidated and even ridiculed as mentally ill by those who should be caring for us, healing us, instead being given drugs that are inappropriate, misdiagnosed or simply being told we can't possibly be sick as Lyme does not exist in Canada (yes we still get that). Hope is hard to come by, and life is near impossible without it... Madeleine Shared with her permission. Please watch Madeleine's speech at the National Lyme Federal Framework Conference. Her talk starts at 1 hour and 33 minutes. 1hr33min |
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December 2020
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