// July 12th, 2010 // 2 Comments » // Family of Lyme, Fundraising for Lymies, Guest Authors
Shared with us by, Helen Raser.
Written by, Katie Johnston
Meet my beautiful friend Birdie…
One day soon we’ll take on the world again. Keep your head up, sister.
“I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,
When he beats his bars and would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart’s deep core,
But a plea, that upward to Heaven he flings –
I know why the caged bird sings.”
(Please stay with me here and read this all the way through)
As you all know, I’m currently planning an event called “F U Lyme” at The Other Bar this Thursday, to help raise money for a lady by the name of Elizabeth Chalker. I had the privilege of hearing Elizabeth Chalker’s story from my dear friend and advisor, Helen Raser. What you need to know about Elizabeth is this: She’s 39 years old, was once an accomplished (PhD) Forensic and Sports Psychologist and athlete. Her passion was helping at risk youth and their families, often without payment. Currently, Elizabeth is dying from Late Stage Lyme Disease & Co-Infecions, as well as Lyme-induced Endometriosis, which have virtually taken over her body. Multiple organs and systems are shutting down. Due to medical ignorance surrounding Lyme disease, she has been suffering for over 20 years, debilitated the last 7 years. Without appropriate treatment she will die an agonizing death.
Elizabeth’s body is wracked with pain 24 hours a day – uncontrollable muscle twitches – daily migraines – seizures – convulsions – constant nausea and dizziness – extreme light and sound sensitivity – excruciating bone and organ pain – inability to sleep more than ½ hour at a time – inability to stand long without blacking out – And with virtually no family to help, she lives alone in a cold, dark apartment, in constant agony. Elizabeth’s only chance for the life saving treatment she desperately needs is in Washington State . But treatment will take years and hundreds of thousands of dollars.
In spite of this indescribable torture, Elizabeth has the most amazingly strong spirit and huge heart. She will help anyone who reaches out to her, though no one can help her. Her dream is to be able to dedicate her life to helping others and make a difference in the world. Helping Elizabeth would be like helping thousands. The world needs Elizabeth Chalker.
Although we’re throwing this bash in an attempt to raise money for Elizabeth, it’s also about raising awareness of Lyme. What you really need to know about it, is this: Lyme disease affects MILLIONS around the world, in every state, and on every continent. It is the fastest growing infectious disease, growing at a rate of over 39%, and is 10 times more prevalent than HIV / AIDS. It mimics, causes or contributes to more than 300 other disease and conditions and is frequently misdiagnosed as MS, Lupus, Parkinsons, ALS, Alzeimers, Arthritis, Rheumatoid Arthrits, Fibromyalgia, Chronic Fatigue Syndrome, Psychiatric Disorders, even Cancer, and much more. It can affect every single organ and system in the body, thus causing neurological, cardiac, gastrointestinal, vision, hearing, psychiatric, and many other issues. Yet people are misdiagnosed every day and left to suffer mercilessly and even die.
The State Attorney General of Connecticut launched an investigation of the IDSA Lyme Panel and determined that their guidelines for diagnosing and treating lyme are FLAWED and that panel members had conflicts of interest (IE: ties to insurance companies, pharmaceutical companies, patents, etc). They were ordered to form a new panel and to re-do the guidelines. In the meantime, doctors are operating under those flawed guidelines, denying that Chronic or Late Stage Lyme even exist and that Lyme Disease is rare and easy to treat. And doctors who are willing to become educated and administer proper treatment risk losing their licenses and other penalties. Because of politics, greed and egos, millions of lives are being destroyed. One extremely important life in particular is being destroyed…
Now, onto why this event is so personal for me and back to the caged bird reference… Seven years ago, I met a boy that would change my life, as do most significant people one comes across in this great journey. John became my best friend and soon after, much more than that. He introduced me to a world I never knew existed, whilst also introducing me to one of the most incredible friends I’ll ever have. Life only affords you so many people in life who will actually reciprocate your love for them. Through John, I found an entire family willing to do just that, but more than that, I found my Birdie, the inspiration to all of this madness, to F U Lyme, to the reasons sometimes I find it hard to be empathetic to small problems, to the reasons I only allow myself to be down for only a bit, to the reasons I see the world sometimes with TWO sets of eyes, and to the reason I feel things with TWO hearts… because even though you’re not always able to be with me, Terd, I assure you that you are with me more than you’ll ever know. And while your physical body has not allowed you to experience the world like a 23 year old should, you’ve been with me in spirit on so many occasions.
Cue music, world. Meet Teri Danielle Raser. She’s the most beautiful friend I’ve ever had; has the voice of an angel, or of the Jenny Lewises in the world; the innocent laughter of a kid’s first reaction to the tea cup ride at Disney; a heart the size of Texas, scratch that, more like that of the size of all of Africa; dance moves better than Ashlee Simpson (inside joke); and a wit about her that even Rainn Wilson couldn’t contest on his Twitter page. Aside from all of these amazing attributes, the greatest thing about Teri is that she is exactly that friend every friend wants in life, the one who treats you like you want to be treated, the one that makes you a better person just by being in her presence. This is who she’s always been to me… ever since I met her on that sweet summer day 5 years ago.
Since then, Bird & I have shared clothes, gossip, deepest-darkest secrets, belly-aching laughter, beds, concerts – live & in the car, a room for a summer, and the best of times… but most recently, we’ve shared some of the worst. In February of 2007, Teri was struck with something we spent day in and day out chasing, trying to figure out, to understand, only to be misdiagnosed for months on end until finally determining that she, my very best friend, was suffering from Lyme Disease which has since proven to be the biggest battle she, her family, and her friends have had to fight yet. (Read more of her story from her brother’s eyes here: http://gospeedraser.com/2009/02/22/under-our-skin/ & http://gospeedraser.com/causes/).
For the last 3.5 years, Bird has endured treatments after treatment, IV therapy, medication post medication post medication, and days and nights on end spent lying in bed, unable some days to even walk down the stairs for family dinner. Her symptoms match closely to those of Elizabeth’s listed above. Too physically sick to stay on her own, Teri was forced to leave Miami mid-sophomore year, at the height of her college career, dominating UM’s best blog, working for a couture fashion designer, all the while owning the Miami social scene. And now her life consists of TV shows on DVR, a very cute and large mini-Shetland look-alike pup Ziggy & his big but smaller brother Hurley, adorable cousins Liv & Iz to brighten the day, occasional phone calls or texts from friends, daily visits from Eva/Chris/John/her parents,.. and finally Grandpa Joe sessions with me when time & her health allows.
The point of all of this story-telling is simply this: if you’re in the area, I’m asking you ever so kindly to show your face at this F U Lyme event this Thursday, July 15th from 7-10 PM at The Other Bar, to bring your $5 and if you have more to spare, please do so. (http://www.facebook.com/event.php?eid=142167449131064)
If you don’t live in the area, I’m asking you to donate. Contact me about how. Contact John. Contact Mrs. Helen. If you’re in the area and can’t make it OR if you’re not in the area and can’t donate, fine, fair enough. I understand. Just let this all soak in.
For 5 minutes, think about how fragile life is; how drastically it can change in the blink of an eye or in a matter of a night in Teri’s case; how no matter how bad you might think you have it, someone else probably has it worse; how the Government needs to recognize that Lyme Disease is an epidemic… that this isn’t just a story you heard and need to prove true through Snopes.com. This is real life. And for me, it’s personal. Really personal. So take your 5 minutes, and help me raise awareness, for Elizabeth Chalker, for Teri Raser, for all Lyme victims in the world… and for all of those people in their lives affected by it.
Bird, you once told me I was never allowed to leave your life. I promise you, on everything, I’m not going anywhere. Not now, not ever. I’ll be here every day, every single day… until you can face the sunshine again. And I promise you the sun will shine again. Although I don’t understand why this happened nor do I like whatever purpose this all serves, if ever I believed someone had the strength to turn it all around, I would place bets on you. High bets, at that. And until then, I will happily grandpa joe it right beside you, making bucket lists the world will be envious of, crying when you feel compelled to do so, and laughing obnoxiously loud just when you need it.
Although your body might make you a caged bird, I hear your song and I know why you sing, and one day soon, you will find freedom again. Please know that but most of all, believe it. Believe it with all your heart, because I believe it with all of mine.