The Lyme Spot is about having Lyme: living with it, putting up with it, embracing it, damning it, figuring it out, not figuring it out, but most of all...it's about community. I will be sharing my experience, my feelings, and all the things I know that help me get through my days and keep me feeling positive, or at the very least keep me alive! But please, also come here to share your experiences, feelings and all the things you know. Together, we can get through anything...

Please Don't Forget About Us - By Alyssa

A wonderfully written letter by my Lyme friend Alyssa.

As the year comes to an end I like to spend some time thinking about the past 12 months. I have had so much goodness this year and so much to be grateful for. On a melancholy note...my request to everyone for 2012 is to....please not forget about "us"

I renew my vow to myself and to the Lyme community to continue to fight for proper treatment, accurate testing, support for those fighting this horrible disease and I ask you to do the same. Will you please not forget about "us"??!!!

December is closing in on its end and these last few days are filled with a sadness....The Lyme community has lost yet another. There has been yet another attempt at suicide. The year was filled with this news....people whose bodies can no longer fight this disease off and people who feel as though they have no other choice but to end it themselves.

Tonight I sat and wept....huge sad tears....tears of frustration. This could have been me...or my son...I am scared for the many who I have become so close to who are struggling with Lyme right now. I fear for their lives and everyday I hope they take one step forward and not backwards.

If you would be so kind....this year when you make your resolutions...will you make one saying
you will not forget about us? That you will stand by our side please? We need all the help we can get.....

Alyssa
(Lyme Angel)

My answer: Yes! I'm about to send a letter to a restaurant advocating for those of us with MCS. I had to leave in the middle of my dinner because they sprayed a toxic cleaner next to me while I ate. I'm advocating for myself, but also for everyone who is not well enough to advocate for themselves. When I started working with at-risk children I became an advocate for children. This year I became an advocate for Lyme and chronic illness. Wherever there is a need, as long as I have even a tiny speck of strength, I will advocate, for as long as I live. This is my promise. I will never willingly break it.

May 2011 be full of positive movement toward the goal of all human beings being treated with dignity and love! Thank you to each and every one of you, who I know contribute daily to this goal. You are all inspirations to me. With the New Year, let us have a renewed sense of hope! As Cesar Chavez and Dolores Huerta said, "Si, se puede!"

2 comments:

  1. My latest realization of living with Lyme's is that it is a life of obstacles. There is an obstacle for everything I do or attempt to do. Whether it be a mental obstacle such as, not remembering the purpose of going from one room to another, or not being able to focus long enough to accomplish simple daily tasks like balancing a checkbook, to physical obstacles that limit what work or recreation I can do and how long I can do it. All Lyme patients experience unreasonable obstacles to proper diagnosis, treatment, insurance coverage, and acceptance by the mainstream medical community. I can understand how all these relentless obstacles could drive some to desperate measures in search of relief, but I remind myself daily that life is hard--and even harder for some. The bright side to this constant battle with obstacles is it forces me to live in the moment, and living in the moment has been believed to be a foundation for happiness for thousands of years. That does not mean "throwing in the towel" and waiting for a cure; it means this moment might be the moment to act: write your congressman, start a blog like this one, talk to your neighbor, teach, and learn about Lyme's disease. In other words, use the moment to spread awareness. It will help relieve some of the stress these obstacles create, make you feel that you can make a difference, and ultimately you will contribute to removing the obstacles to a cure.

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  2. Well said. I really like this: "All Lyme patients experience unreasonable obstacles to proper diagnosis, treatment, insurance coverage, and acceptance by the mainstream medical community." Unreasonable obstacles is right. Those two words together really encapsulate a major part of the experience this disease.

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