Coming out. In this culture the phrase "coming out" typically means declaring your sexuality to your family and community. I just realized that this phrase has it's own meaning when talking about illness. We all know the stages of acceptance, the grieving process....blah blah blah. I think I want to add the "coming out" stage.
I thought my "coming out" was when I became visibly very ill in the Spring 2011 and had to disclose to my community how ill I was. This led to so much support in many ways that I am eternally grateful for. It also took away my mask of anonymity. As hard as this is (and trust me it is hard), it has opened doors of healing and support I never thought possible.
One such door is about to be blown off the hinges and the next phase of "coming out" will commence. My sweet friend/co-worker Wendy has organized an amazing benefit night for me next Sunday. For me? Really? These thoughts swirl through the head at varying pitches of amazement. Honestly, it couldn't come at a better time on many levels.
The bank account (once again) is bleeding heavily. Somehow though, through this whole process, when one door closes another opens. When I run out of money and have no idea how I will pay the medical bills, then money appears. I am learning, again and again, that I have to trust the universe to provide what is needed.
What is also needed right now is for me to feel encouraged and hopeful. I had been feeling a little better since going to Portland every two weeks to see the traditional Chinese medicine doctor. I started to attach to this "feeling stronger," which was why when the Lyme flared (again) in the last few weeks I felt as if someone had punched me and I couldn't catch my breath. Discouraged is the understatement of the year. It is so easy with this disease to get discouraged. Healing isn't remotely linear or gradual and everything is completely unpredictable. But, somehow I am still moving forward through the ridiculous amount of head and body pain and the myriad of symptoms that just can't seem to get the memo to get lost.
My motivation for writing this post was to get my thoughts together before the benefit next week. I want to somehow be able to speak with some degree of knowledge and coherency about a disease and treatment that is ridiculously complicated and convoluted. Somehow my brain, that is ravaged by this f*&^*^ing disease, needs to put together coherent thoughts that make sense and can convey what I have been through and impart resources to others that are seeking diagnosis/treatment. Oh, this is where I pray to the higher power and ask the universe to provide. Just a minute. Okay....did that (for the hundredth time). It better work this time because on Wednesday I really "come out." Wendy scheduled an interview at the local public radio station (KLCC, 89.7) at 1:00. Holy crap! (breathing, breathing, breathing).
Hopefully the words that should be articulately conveyed will enter into the head. I do want the fundraiser to be successful, because honestly I do really need help with the medical expenses. But, what I want more than anything is to help raise awareness about Lyme Disease. I have been sick for 17 years. This disease has engulfed my body and my life. It didn't have to. I could have been treated properly when I was originally diagnosed in the Spring of 1995. I wasn't treated properly because I didn't know what to fight for. I didn't know that the doctors were not informed or were mis-informed. I didn't know that the quality of my life was at stake. I didn't know the amount of havoc this disease would cause to me and my family. If I had a clue, a window into the future, I would have fought harder to find treatment. But, I didn't know.
That is what this "coming out" is really about now. If by talking on the radio, standing in front of hundreds of people on Sunday at COZMIC, and taking off all my masks that remain.....if that helps one person to not suffer from Lyme disease that it is worth it. It is so worth it.
Here are links to more information about Lyme Disease:
For general information about Lyme Disease, here are some links:
http://www.ilads.org/
http://www.lymediseaseassociation.org/ (will have their brochures
available at the benefit)
http://underourskin.com/ (fantastic documentary. Available on Netflix
and other online sources. We will show the trailer for this movie at the
benefit).
The press release that I received from Wendy. Feel free to copy and send to your friends/community.
On Sunday, June 10th beginning at 6:30 pm at COZMIC there will be
a benefit show for Faith LaCross. Faith contracted Lyme Disease 17
years ago, but was just diagnosed one year ago and began treatment.
Most of her medical
expenses are not covered by insurance.
Entertainment at the event will include the Eugene Bhangra Dance
Group, acoustic guitar by Will Brown (all original songs) and a guitar
and vocal set by Julia Damon. All are local Eugene performers.
In addition to musical entertainment, the show will include a short
presentation about Lyme Disease (yes, you can contract it on the west
coast!) as well as a raffle of local original art pieces and various
healing arts gift certificate baskets. Raffle tickets are $2 each or 6
for $10.
Tickets for the show are $8-$20, with a family price of $15 and are
sold at the door.
We hope to see YOU on June 10th, beginning at 6:30 p.m. AT COZMIC, 199
WEST 8TH AVENUE.
I thought my "coming out" was when I became visibly very ill in the Spring 2011 and had to disclose to my community how ill I was. This led to so much support in many ways that I am eternally grateful for. It also took away my mask of anonymity. As hard as this is (and trust me it is hard), it has opened doors of healing and support I never thought possible.
One such door is about to be blown off the hinges and the next phase of "coming out" will commence. My sweet friend/co-worker Wendy has organized an amazing benefit night for me next Sunday. For me? Really? These thoughts swirl through the head at varying pitches of amazement. Honestly, it couldn't come at a better time on many levels.
The bank account (once again) is bleeding heavily. Somehow though, through this whole process, when one door closes another opens. When I run out of money and have no idea how I will pay the medical bills, then money appears. I am learning, again and again, that I have to trust the universe to provide what is needed.
What is also needed right now is for me to feel encouraged and hopeful. I had been feeling a little better since going to Portland every two weeks to see the traditional Chinese medicine doctor. I started to attach to this "feeling stronger," which was why when the Lyme flared (again) in the last few weeks I felt as if someone had punched me and I couldn't catch my breath. Discouraged is the understatement of the year. It is so easy with this disease to get discouraged. Healing isn't remotely linear or gradual and everything is completely unpredictable. But, somehow I am still moving forward through the ridiculous amount of head and body pain and the myriad of symptoms that just can't seem to get the memo to get lost.
My motivation for writing this post was to get my thoughts together before the benefit next week. I want to somehow be able to speak with some degree of knowledge and coherency about a disease and treatment that is ridiculously complicated and convoluted. Somehow my brain, that is ravaged by this f*&^*^ing disease, needs to put together coherent thoughts that make sense and can convey what I have been through and impart resources to others that are seeking diagnosis/treatment. Oh, this is where I pray to the higher power and ask the universe to provide. Just a minute. Okay....did that (for the hundredth time). It better work this time because on Wednesday I really "come out." Wendy scheduled an interview at the local public radio station (KLCC, 89.7) at 1:00. Holy crap! (breathing, breathing, breathing).
Hopefully the words that should be articulately conveyed will enter into the head. I do want the fundraiser to be successful, because honestly I do really need help with the medical expenses. But, what I want more than anything is to help raise awareness about Lyme Disease. I have been sick for 17 years. This disease has engulfed my body and my life. It didn't have to. I could have been treated properly when I was originally diagnosed in the Spring of 1995. I wasn't treated properly because I didn't know what to fight for. I didn't know that the doctors were not informed or were mis-informed. I didn't know that the quality of my life was at stake. I didn't know the amount of havoc this disease would cause to me and my family. If I had a clue, a window into the future, I would have fought harder to find treatment. But, I didn't know.
That is what this "coming out" is really about now. If by talking on the radio, standing in front of hundreds of people on Sunday at COZMIC, and taking off all my masks that remain.....if that helps one person to not suffer from Lyme disease that it is worth it. It is so worth it.
Here are links to more information about Lyme Disease:
For general information about Lyme Disease, here are some links:
http://www.ilads.org/
http://www.lymediseaseassociation.org/ (will have their brochures
available at the benefit)
http://underourskin.com/ (fantastic documentary. Available on Netflix
and other online sources. We will show the trailer for this movie at the
benefit).
The press release that I received from Wendy. Feel free to copy and send to your friends/community.
On Sunday, June 10th beginning at 6:30 pm at COZMIC there will be
a benefit show for Faith LaCross. Faith contracted Lyme Disease 17
years ago, but was just diagnosed one year ago and began treatment.
Most of her medical
expenses are not covered by insurance.
Entertainment at the event will include the Eugene Bhangra Dance
Group, acoustic guitar by Will Brown (all original songs) and a guitar
and vocal set by Julia Damon. All are local Eugene performers.
In addition to musical entertainment, the show will include a short
presentation about Lyme Disease (yes, you can contract it on the west
coast!) as well as a raffle of local original art pieces and various
healing arts gift certificate baskets. Raffle tickets are $2 each or 6
for $10.
Tickets for the show are $8-$20, with a family price of $15 and are
sold at the door.
We hope to see YOU on June 10th, beginning at 6:30 p.m. AT COZMIC, 199
WEST 8TH AVENUE.
I'm looking forward to getting a report of the evening! It was so nice to see so many people there. I am sorry I missed the dancing and the presentation, but I passed on your flier to my neighbor who was also recently diagnosed. Love to you and your family, Faith.
ReplyDeleteThank you Holly for taking the time to come tonight. It was great to see you and Rosie. I know you are so busy with finals. It was such an amazing evening! I am just blown away. If your neighbor would like to talk with me anytime I am available. I am glad you passed on the info.
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