Lyme Letters Updates And Blog
Kurtis Colman: Professional Dancer, Advocate: 'Don’t Give Up without giving it Everything you've Got.'
My name is Kurtis Colman. I’m 23 years old from Windsor, Ontario. Linked with this post is a short documentary I was blessed to be a part of that sheds light on my story. But this story isn’t just mine; this is the story of thousands. Compared to some, my obstacles have been blessings. As much as this has impacted my livelihood this isn’t the darkest side of the Lyme Crimes.
This is a brief story expanding upon the events leading up to what you will see in the documentary attached to this post:
Before becoming ill I was a dancer. I had danced from the age of 7 up to 21 at a high level of athleticism. Competing for 7 years on competitive teams and also participating in a dance program at my high school had me dancing at an average of 30 hours a week. When I would compete it would be a weekend of dancing up to 16 hours, which I gladly went through with energy and bliss.
After high school I moved to Los Angeles in pursuit of furthering my craft, where I would be dancing up to 25 hours a week. In search of obtaining a work visa, I then moved to Toronto where I participated in 5 dance groups. Through my connections I was able to dance for Paula Abdul, be a lead in a music video and dance in the background of an episode of Once Upon a Time. One day while dancing in an intense rehearsal my arm gave out on me, although I was in top physical condition.
Slowly symptoms began appearing and consuming my physical, mental and emotional health. I desperately tried to cling to what I’d loved doing most for 14 years but suddenly didn’t have the energy to even get through an hour rehearsal. With so much anger, confusion and pain, my dance career had ended. I didn’t know what was wrong or if I was developing a mental illness.
I lived in fear of telling people what was really happening to me and slowly disappeared from some of my closest friends at the time. This was a very lonely time in my life. As I looked for answers every way I knew how, with my mother doing the same, I took on a job as a host for a restaurant in Toronto (a very expensive city to live in). One day during a shift suddenly my whole nervous system simultaneously tightened, burned and hurt terribly. I had lost all control of my body and emotions. When I went to the hospital I was stuck in the fetal position crying uncontrollably and was paralyzed. When the doctor saw me he told me to take Advil for back pain, and then dismissed me. This was the last straw. I felt like the only place left to go was home. So, I silently disappeared leaving behind my friends, career, craft and hopes in Toronto. To try and recover, find peace and hopefully… answers.
After moving back in with my parents I began to see a therapist. While no answers came from the health system I knew I had to do something. So I signed myself into a rehabilitation facility, following my therapist’s advice. While finding some mental recovery and grieving my past, I was finally diagnosed with Fibromyalgia. After attempting some pain relieving and anti-anxiety medication I found that they only helped with maybe 5% of the symptoms I was experiencing. After completing the program my mother saved my life by finding the real answer to my suffering: Lyme Disease.
After hearing my story a friend of mine who is a film student got a group together to film this documentary for their university class.
I have come across much, much more information and a lot has happened since the filming of this documentary last year. But this would be a much longer story if I shared all of that as well.
One important event I will share is that a fellow advocate, artist and mother of a daughter with Lyme, Donna Y Jacobs and I are collaborating on a show for VOCAL (Voices of Canadians About Lyme) Ottawa and Toronto (Click VOCAL link above for more info). We will be infusing dance, art and spoken word into a story that communicates the current suffering of people with Lyme Disease. It is our dream that we affect people’s hearts to bring much needed change to this systematically ignored pandemic.
Thank you to the Lyme Letters blog for this opportunity. We need blogs like this so much.
To Fellow Lyme Sufferers:
Please stay strong and have hope that things will get better. Because they will. Don’t give up without giving it everything you have, and I promise to do the same. There’s always a way.
To the General Public:
I hope that you educate yourself so that you and your loved ones don’t have to go through what we have. We may put on strong faces but we need your help. We can only do so much, most of our energy is just fighting to at best, have a normal day, at worst, stay alive. Anything you can do to help bring awareness to others is urgently needed.
To the Canadian Health Care System and Government:
Please have compassion for those suffering. We are not your enemies and want what you want: Every Canadian to have the opportunity to live free of health issues. I hope the reign of ignorance, greed and whatever other poor justifications will end soon. There is much work to be done and the sooner the better. The problems continue to grow as the solutions remain hidden. For you and for us, the sooner the better.
I know one day we will see the truly wonderful human beings you really are and you will see the same in us.
Love & Light
Section two of the Canadian Charter of Rights and Freedoms guarantees the right of all Canadians to voice their opinions on any subject they feel the need to voice an opinion on without fear of recriminations. There are limits, of course. You can't libel someone, spew hate propaganda, or engage in obscenities. But what you can do in this country - with the Charter at your back - is publicly and vocally disagree with any government policy or institution you feel is having a negative impact on your life or the lives of your fellow Canadians.
I mention this because in the years since I wrote Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada I've had the opportunity to connect with a great many Canadians suffering from Lyme disease and related tick-borne illnesses. Many have told me about their struggles with both the disease itself and with a healthcare system that is at best unresponsive to their needs. For many Canadian Lyme sufferers that system has been the source of increased suffering and, in the worst cases, outright humiliation.
While some Lyme sufferers have been very vocal about their struggles, many more have chosen to remain silent. And always they give the same reason: They fear that if they publicly criticize their doctors, health authorities, or anyone else for failing to provide them with a satisfactory level of care that they will be subject to exactly the sorts of recriminations that the Charter makes illegal. Getting blackballed by their doctors is often their greatest concern even in cases where they feel those doctors are failing to help them in any meaningful way.
I'd like to draw your attention to an initiative that has recently caught my attention. Sue Faber, a registered nurse who herself has had a nasty battle with Lyme disease, has instigated a letter writing campaign through which she hopes to collect 10,000 letters from Lyme disease sufferers, their caregivers, and anyone else interested in seeing improvements in the way Lyme disease is treated in this country. The plan is to hand deliver these letters to federal health minister Jane Philpott or, failing that, to hand deliver them to her constituency office. But they will be delivered.
This letter writing campaign gives Lyme sufferers an excellent opportunity to be heard by a someone in a position to provide help. And the more people who participate, the better the results are likely to be. The federal health minister needs to hear the stories that I have been hearing for years and she needs to hear just how many of those stories there are. There is a perception at the highest levels of public health that very few people in Canada have Lyme disease largely because a vocal minority has been speaking on behalf of everyone. It's now time for everyone who has been silent to speak up. It's the only way to ensure that things are going to change for the better.
Anyone who is nervous about spilling their guts to the federal health minister just needs to remember this: A federal minister is one of the least likely people in this country to stomp on your Charter rights. As career killers go, that's a pretty big one in political circles. So tell your story loudly and proudly. Say what you think about the way Lyme and related diseases have been handled in Canada. In standing up for your own rights, you are standing up for the rights of all Canadians. And if the projections for how quickly Lyme disease is going to spread across Canada are even remotely accurate, then it's safe to say that all Canadians - whether they know it or not - need you to stand up for improvements in healthcare that will impact a significant number of Canadians within just a few years.
Vanessa Farnsworth is former horticulturist, journalist and long-time resident of rural British Columbia. She is the author of Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada and her writings on Lyme disease and related tick-borne illnesses have been published in magazines and on blogs across Canada.
To order Rain on a Distant Roof: A Personal Journey Through Lyme Disease please click on the book cover and the link will bring you to Amazon.ca. This is a must read for all Canadian Lyme Sufferers, their loved ones and friends who are wanting to learn more and understand this devastating disease. I am so thankful for Vanessa, her advocay and her participation and support of the Lyme Letters Campaign. Please click on link below for more information on her important work.
Dr Sin Lee - Pathologist - Director of Milford Molecular Diagnostics, Milford, Connecticut ' 'Perhaps, the Lyme revolution in medicine will be initiated by a Canadian Visionary'.
I learned about Dr Sin Lee while reading an article in Huffington Post written by Mary Beth Pfeiffer - investigative journalist. http://www.huffingtonpost.com/entry/5873ef2fe4b08052400ee537?timestamp=1483994986602
As I read this fascinating article I saw that there was something very special about this doctor, a molecular pathologist, a researcher, a truth-teller. He has published several times in scientific journals around the world. It was obvious to me that he was on a quest for truth, a quest to speak out, generate discussion and to ask much needed questions regarding the ongoing rhetoric surrounding Lyme Disease - specifically the two-tier testing.
I decided to contact him and see if he would take the time to critique another journal article which had been published in December 2016 and written by Canadian Public Health Department: 'The Accuracy of Diagnostic Tests for Lyme Disease in Humans, A Systematic Review and Meta-Analysis of North American Research'. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0168613
Dr. Lee kindly responded back and we spoke on the phone a couple of days later. What a gentleman. I felt so honored to engage in conversation with this expert - that he would take the time to talk to me. He was kind, curious, intelligent - brilliant in fact, and no-nonsense. I asked him if he would read the above article and respond. Three days later he did. His rebuttal can be found here - posted to CanLyme website: https://canlyme.com/2017/01/31/canadian-tax-payer-funded-lyme-research-not-good-value-for-dollar/
Dr. Sin Lee has now been added to my book of modern day medical heroes. What I found so incredible is that he actually earned the designation FRCP-C (Fellow of the Royal College of Physicians Canada) in 1966, and later was on the faculty at McGill University in Montreal! Now how awesome is that!
Just a couple of days ago, Dr Lee wrote me back again..with these words.
'Modern American medicine was initiated by Dr. Osler from McGill who brought his vision to Johns Hopkins. Perhaps, the Lyme revolution in medicine will be initiated by a Canadian visionary'.
Sin Hang Lee, MD graduated from Wuhan Medical College in China. After a residency-fellowship at Cornell-New York Hospital and Memorial Hospital for Cancer, Dr. Lee was certified by the American Board of Pathology and obtained the F.R.C.P. (C) degree by examination in 1966. He was on the faculty of McGill University, then Yale University from 1968-2004 while practicing hospital-based pathology. Dr. Lee is currently the director of Milford Molecular Diagnostics, Milford, Connecticut. Dr. Lee has developed and published routine Sanger sequencing-based diagnostic methods for HPV, Neisseria gonorrhoeae, Chlamydia trachomatis, Lyme disease borreliae and BRCA1/2 mutations implementable in community hospital laboratories.