In Memory of Lindsay K., Lyme took her life

My friend Lindsay, a 28-year old wonderful young woman, who I met years ago at a Lyme support group and question Board, took her life on September 23, 2010 because of her ongoing battle with Lyme Disease. Because this happened so recently, I have been getting hit with waves of grief, that come and go, and moments of utter despair, frustration, anger, and sadness at all of it. I have never known someone close to me to lose their life let alone take their life from an illness that I also have. It hits very close to home in a surreal way that makes me nauseated to even talk about.

I had spoken with Lindsay many times. She graduated UC Berkeley's prestigious Boalt School of Law, but became to ill that year to take the Bar Exam and practice law. She became so ill she moved back to the Midwest to have her parents take care of her. Years and years of treatment, and some improvements, but her case seemed unusually difficult. I've been through hell and back, repeatedly, I can say that without a stutter, and yet this young woman fought an even harder uphill battle.

Lindsay and I talked and emailed a lot. The severity of her Lyme was extremely intense, but I could relate to every symptom she had. When she told me how her life was so meaningless and painful and empty and she could not go on living like this as a young woman in bed at her parents' home for years, I knew too well the feelings she talked about. This does not imply that her family wasn't loving and incredibly supportive; it means that living in bed most of the time while friends your age go on with their lives is incredibly difficult (I know from experience).

Talking of taking your own life is common in the Lyme community. The horrifying symptoms and at-times excruciatingly unbearable treatment (think chemo for years), and the loss of life and identity and loss of any financial stability, and the lack of belief by doctors and even your own family can make you a mess, a puddle of water on the ground wanting to seep into the Earth and never return. There is no way to understand or explain in words the severity of the physical and psychological pain of this disease. However, that said, Lindsay promised me she would never take her life because her sister and closest friend, who had a rare neurological disorder, took her life a year earlier. She told me it would hurt all the wrong people.

Lindsay was right. All those who loved her are in despair. My emotions are mixed, and I find that the grief, anger, despair seeps in when I least expect it. Like today when I went to the doctor's office we once shared, and cried hysterically out of nowhere.

Lindsay's mom told me she was experiencing intense anxiety. And I spoke with Lindsay a couple weeks before her death and know she was unusually off kilter. And in that state of Lyme-induced illness and treatment-herxing, she became a different person altogether. The coroner's autopsy showed swelling of the brain, which is not surprising given the often unimaginable effects of Lyme on the brain.

How Lindsay dealt with the loss of her sister and a torturous disease with a life condemned to a bed so sick to be even unable to do basic things is beyond me. She tried so many treatments, for years, and told me she was going to India next year for stem cell treatment (which has helped many Lyme patients who had not otherwise improved with treatment).

I had no idea and the news of her death came as a shock to me when her mother found my number on her cell phone and called me one Friday night. We were both crying hysterically on the phone. I will never understand how Lindsay's mother is able to deal with the grief of two lost daughters. But she did make clear that Lindsay took her life because of Lyme and she wanted this to be known. I know it, and her mother knows it. The world needs to know it to understand the severity of this disease that much of the medical community knows nothing about.

With sadness, shock, anger, and tears pumping through my veins, I hung up with Linsday's mom and realize how close to home this death had hit. I cannot describe it but my closest friend "JB" (who I met through Lyme support and also has late-stage Lyme) responded to my email that described Lindsay's death and so accurately described the sentiment of the Lyme patient community:

"Oh Mona I want to throw up, cry and crumble all at once---There are so, friends, Dr's, politicians..........who are in TOTAL disbelief. If not for this disbelief I do not think we would have so many suicides associated with this disease. Yes, we would have some due to the sheer despair of knowing when or if the pain will end---but if we all had support when the pain is so great and our mind is literally failing us, we may be able to hold on just a little longer...maybe much longer.

With all I have, a beautiful family..... 2 amazing children to live for.....I don't have much support, true believers, and I also have many many disbelievers. I wish I could get them out of my mind--but when you are sick, you are lonely and want empathy and love. Just a common, basic human need.

But because this stupid country with these dumb Dr's, politicians, health insurance companies......I dont know how the FUCK we will ever bring light to the most hideous disease I think to ever walk this earth. NO disease I know of makes you feel like you are dying constantly , makes you run to the emergency room because organs are just running out of synch at the moment.....and WORST of all...tell me a disease that truly alters your mind and your thoughts. Gets into your brain and totally changes who you truly authentically are.

This is so awful--God we MUST change things.

I LOVE YOU SO MUCH sweet friend....Love, J"

That sums up how I feel. I am nauseated still. I cannot eat much, and believe me, I need to gain some weight. I am sickened and haunted by Lindsay's face. I wish she hadn't done this.

I have always known I would use my law degree to make change; I didn't expect it would be making change around a disease I knew nothing about. But when life throws you lemons, you make lemonade. I plan on serving a ton of it and pouring gallons on the heads of the IDSA (you can read about them in "The Great Lyme Controversy" page at the top of the blog)!

Lindsay, you are a beautiful and amazing young woman, who is now at peace, I suppose. Your memory and spirit live on and drive me even more to keep up this fight. I would have kept fighting though, I wish you hadn't left all of us.

How Lindsay's mother, family, and friends can deal with this amount of grief is beyond me. I certainly cannot imagine anything harder than losing your child. I am republishing Lindsay's obituary with her mother's permission:
"Age 28. Cherished daughter, compassionate friend , loyal companion to her dog Louis, Passed away unexpectedly on Sept. 23, 2010, due to complications from Lyme Disease and its co-infections. Born 12/19/81 in St. Louis Park, Lindsay attended St. Louis Park Senior High School (class of 2000), Grinnell College in Iowa (2004), and Berkeley Law School (Boalt Hall) in Berkeley, CA (2007). Although Lindsay graduated, she could not take the Bar and pursue her passion in Public Interest Law, for Lyme Disease had already invaded her body. Her friends would describe Lindsay as kind, caring, compassionate, silly, unassuming and she returned those feelings in her fierce and intense love for her family and friends. She fought Lyme Disease for over 5 years with her usual intensity. After surrendering her spirit to her Saviour, Lindsay has joined her beloved sister Jennie in the Kingdom of God, where they both left behind their broken earthly bodies, and now their souls are together again in the love and joy of Heaven. Preceded in death by her cherished sister Jennifer Jean (Feb 2010), grandparents, and cousin X. Lindsay will be immensely missed but eternally loved by her parents M and T and her dear friends. Services to be held on Saturday October 9, 2010. Donations preferred to (Lyme Disease advocacy).

***Post note, after the last few weeks since Lindsay's death, Lindsay's mother, Terri, and I have been in touch by email and phone. Although it is occasional, she left me a message the other day. I was having a horrible day, horrible. I felt like helpless and alone. Various people had confronted and berated me, on top of not sleeping or feeling well. Terri's voicemail was sweet, but I will never forget sitting in the car listening to her say, "Lindsay always said to tell people you love that you love them. She said it was so important to tell them you love them." And then Terri said, "I love you, Mona." Terri and I have never met, but I feel her love and love her back. And that moment of simple love brought me out of my cave of absolute darkness. A woman I've never met across the country. I can only say that it seems Lindsay is smiling on us from above as she watches these connections that have been forged because of her.