Friday, July 27, 2012

Seeing Right Through Me...

For the past several years, I've found myself stumbling into old friends at the most random of moments, and have learned something that I have come to discover, every Lyme Patient knows: I LOOK FINE. 

In fact, no one would ever expect that I was even remotely ill. It's actually become kind of an art of mine, hiding my physical, cognitive, and emotional symptoms from everyone, hell - if you look at my facebook pictures you could almost call me a liar...but deep inside I'm always yearning to actually feel how I look.

It's surprising, but this wasn't always the case, I did have a period where a handful of some very unfortunate souls witnessed what Lyme ACTUALLY looks like. One of them even wrote about it in an effort to help me win a war I was entrenched in for over two years with disability. 

I will forever be grateful to him for writing this. I barely remember anything that happened during that last couple of months in 2007, and without it, I would never know what a normal person must "think" when they witness something as crazy as this...Clark, I miss and love you very much, thanks for watching me go through hell and having the guts to write about it xo   

Here is the letter NY Disability received:

2607 Halm Avenue
Los Angeles, California, 90024 
(310) 903-7282 

October 13, 2009
To Whom It May Concern:

I have been asked to describe my observations of the physical and mental condition of Sarah Lamando during the fall and winter of 2007.

At the time, Ms. Lamando and I both resided in apartments at 4437 Ambrose Avenue in Los Angeles. When I first met Ms. Lamando in early 2007, she was full of energy and enthusiasm, practicing yoga, horseback riding and several other sports on a daily basis. She led me on many energetic hikes through nearby Griffith Park. In conversation, her mind was sharp and witty. She was, in other words, a happy and healthy young woman with an infectious enjoyment of life.

Beginning in September 2007, I witnessed a shocking change in her physical and emotional demeanor. She lost weight rapidly and her healthy skin tone grew pale and sallow. She became inexplicably disoriented in the middle of conversations. Once, at a restaurant, she became so confused and withdrawn from her surroundings that we were forced to abandon our meals. I gently escorted her back to her apartment where she collapsed in bed and could not move for several days.

She had just been hired as a massage therapist at one of Los Angeles’ most renowned health spas, and her clientele included celebrities in the entertainment industry. This was her dream job so it was especially heartbreaking when her decline became so debilitating that she could no longer work. Her physical grace and strength vanished and she began to suffer frightening seizures. This happy and healthy young woman had, in a few short months, been reduced to a bed-ridden shadow of her former self. It was devastating to witness.

In December 2007, Ms. Lamando’s condition had become so life-threatening that she was forced to give up her dream of living in Los Angeles and return home to New York, where she immediately began intensive treatments for her condition.

I have witnessed family and friends suffer from a variety of ailments, including cancer, alcoholism and manic depression. Ms. Lamando’s physical and mental deterioration during this period was more rapid and severe than anything I have ever experienced.

I knew little about Lyme Disease before meeting Ms. Lamando. Since then, I’ve educated myself about this chronic disease. I understand that Ms. Lamando has worked hard to regain some of her health, and for that I am thankful. But it frightens me to realize that she can suffer a relapse at any time.

I hope this letter serves to illuminate particulars about Ms. Lamando’s medical condition. If I may provide any further information, please do not hesitate to contact me at the above address and phone number.


Clark Perry

I think the saddest part about the letter is that, however horrific it may sound, it is still only a fraction of what was really happening to me. The scariest part about it is that it can happen to ANYONE...

If you are considering on contributing to our indiegogo campaign, please, don't wait till the last minute. Trust that there is a reason I picked this organization, and please realize that I did it in an effort to protect future generations....

My grandmother used say to me, "Thank God you have your health, Sarah," and I used to laugh at her not understanding what it meant to NOT have something I felt was so obviously "there". Now I know what she meant and pray that at such a young age, you never do, but if so, that there will always be a place for you to go.

All My Best,

Wednesday, July 18, 2012

The Art of War: According To a Pisces

Recently, while putting together the final touches to the Indiegogo campaign, I had the honor of speaking with the Founder and CEO of Inanna House, Mara Williams. 

Something she said, struck me and I finally realized why I've chosen her vision for Inanna House to both advocate and fundraise for.

I had inquired about getting a very prominent Lyme Advocate involved in the campaign, and she simply replied that this person was too busy, and so entrenched in trying to change "the Political Affairs regarding Lyme Patients" to participate.

The second she said that, a vision of a person passionately throwing himself against an enormous black mountain in a desperate attempt to move it, flashed threw my mind, and I kind of chuckled and said, "Well that's not gonna happen just yet... : )

Please don't misunderstand, I admire ALL efforts that are being put forth to change and rectify the controversy surrounding this's just that I've recently chosen to "fight" in a different way - one that suits my nature much better : )

I'm sure there are a LOT of different opinions about Pisces in general out there, but the ONE thing that is incredible about us is our ability to adapt! 

Going back to the metaphor above, if I saw an enormous black mountain that I needed to have moved, I would NOT throw myself against it, no...the Pisces in me would simply want to carve a watery path around it, and ask others to follow and - in a nutshell, this is what Inanna House is doing for us!

Eventually, if enough of us follow that path, something amazing would happen, something only water could do. It would erode the foundation of that impenetrable rock and we'd all watch in wonder as that mountain simply crumbled to the ground. Now...wouldn't that be the ultimate understanding of Lao Tzu's quote in The Art of War, "Know Thy Enemy"??

Here's What We Need To Do
  • Click on the icon for our campaign below, and if you can, contribute - we have amazing perks AND if we don't reach our goal in 45 days all contributions will automatically be refunded, so there's no harm in trying : ) 
  • I know there are many Lyme patients in financial despair and cannot contribute, but even then, there's so much you can do to help. A short lesson in understanding the "Indiegogo platform" will help you show you why:

*They have something called a "gogofactor" which means that a unique computer algorithm can automatically tell how many people are going to the site and sharing the campaign with others. If enough people go to the site and share using the "Indiegogo Sharing Tools" Inanna House will be featured on the website itself, which in turn, would gain us global and media exposure!*

How to "Share"
  1. If you have a facebook or twitter account, go to the website by clicking on the icon below, and click the facebook "like" icon on it; if you have a twitter account, click on that icon and tweet something GREAT about it!
  2. E-mail the campaign to any contacts and friends you'd like and use this particular URL link to direct them to the campaign: (it's the gogofactor URL)
  3. If you have a blog or website, please either share this post, or create your own post about it, and use this HTML embed code to get the image below, it will enable them to click on it and direct them to the site: <iframe src="" width="224px" height="429px" frameborder="0" scrolling="no"></iframe>
  4. The last thing you can do to help us get featured is just by going to the site and clicking through it...that's it!

All My Best,
Sarah : )

PS: I know my pitch video is a little choppy; I did my best, and I have Lyme Disease - get over it! I do enjoy a good laugh though, and am happy to be the fool for a good cause, soooo if you want to see something REALLY funny, go to my "blooper reel" in the Gallery Section on the website : )