“Ellie was living the American dream. But one bite took it all away.”
I just had to share this incredible, personal account with everyone who cares to read/listen. I was listening to NPR (National Public Radio) the other day while running errands, and became so mezmerized by this woman’s story that I had to pull my car off the road, to hear how it played out. There I sat in a busy parking lot, furiously wiping my tears with my tank top and doing the “ugly cry”. I’m sure people saw me, and I’m sure that they thought I was a lunatic. Who cares? I’ll most likely never see them again, and sometimes, emotionally connecting to the plight of another human being trumps appearing sane.
Here’s the transcript from the show:
GLYNN WASHINGTON, HOST:
Welcome back to SNAP JUDGMENT, the “Unspoken” episode. And today on the show, we’re talking about the things that we don’t say. And for our next story, Ellie, she had everything she ever wanted – a house, a good job, a family, the American dream. But then life took her for a ride.
(SOUNDBITE OF MUSIC)
ELLIE LOBEL: I’m originally from here in the Midwest and, you know, we’re used to black widows and brown recluse. And I had just actually had just doused a tarantula in my garage.
DAVEY KIM, BYLINE: That tarantula…
LOBEL: My neighbor’s son’s tarantula had gotten out (laughter). I’m like, oh, goodness.
KIM: I won’t tell anyone. Anyhow, back in ’97, it was strange when Ellie woke up one day and noticed some kind of bite on the inside of her thigh.
LOBEL: This red spot, you know, in the shower, and I thought, well, that’s just odd. Maybe something got me while I was gardening over the weekend, and I didn’t think anything of it. So, you know, I just let it go. And I was young and had young children, so I was a busy mom. And then, all of a sudden, a pouring mess of night sweats. It was this shaking, like a Parkinson’s patient. It was – someone had turned the volume up on my hearing. I walked around with, you know, those – when you go to a shooting range and they give you the – you put the earplugs in your ears. I had to have those in my ears 24/7.
KIM: Ellie went to the doctor.
LOBEL: I was diagnosed with rheumatoid arthritis.
KIM: Then another.
KIM: Then another.
KIM: Fourth time’s the charm.
LOBEL: Chronic fatigue syndrome, congestive heart failure. The list was so long of the things I was told that I had that I just thought either, number one, I’m a complete wreck basket case at this point, you know, or could they all be wrong? We had this big yellow lab, and we named him Rocky Boy. He was a puppy when we got him, and he just kept growing and growing. And the more he would grow and the weaker I became, the less I could deal with the dog because he would bounce through the house and almost knock me over. And I finally said, you know, I have to get – I have to let this dog go. I love him, and, you know, the kids loved him.
KIM: Ellie put an ad out to find a home for Rocky Boy. When a park ranger and his family came to see him…
LOBEL: They asked me why I was letting the dog go. And when I explained to them what was going on with me, it was the park ranger who actually said to me, you know, you sound like you have Lyme disease. I was like, what the heck is that, you know?
KIM: A year after her first bite, Ellie was checked out again, and sure enough, she was diagnosed with Lyme. Lyme disease is a bacterial illness caused by tick bites. Her doctor immediately put her on antibiotics.
LOBEL: And, oh, my God, we know what it is. Hallelujah.
KIM: Every day for six weeks, Ellie went to get antibiotic shots, and she felt better. Then…
LOBEL: One day, I went to go pick up my kids’ fast food right down the street less than a mile from our house, and my kids are calling me on the phone. Mom, where are you? Mom, where are you? Where are you? And I just – I don’t know. I don’t know where I am. Are you OK? Are you OK? And I’m like, yeah, what happened, you know? I’ve got your food sitting right here. They’re like, Mom, that was two-and-a-half hours ago. I’ve tried everything – erythromyacin (ph), botanic frequency, doxycycline, biofeedback, myosin, amoxicillins, mepron, IV rocephin, the rife machine.
KIM: Ellie was at risk of dying from multiple organ and congestive heart failure.
LOBEL: I went for my doctor’s appointment, and he came into the room and he sat in front of me. He said to me, you know, you have fought so hard. You know, I’m really afraid that this really is it for you. And I said to him, no, my daughters need me. I have to at least see them into young adulthood. They had to watch their mom suffer through all this. You know, I had to teach them how to balance checkbooks, and you know – and not everybody’s nice. Not everybody’s going to have your best interest at heart. They had a lot of really tough lessons.
I met a lot of fellow Lyme friends through our Lyme support groups. And in the groups, you can sense the hopelessness where they want to end it. And even if one didn’t want to go, when I would show up to the meetings, I would always convey to them, you hang onto hope till your last breath, but you never give up. But it came back like hell hath no fury. It went downhill so fast. Well, I went through a horrible divorce. Maybe my husband wasn’t getting enough attention. Maybe he ran off and did what he did because I couldn’t always be present. Your family, your closest people, they don’t know how to just be there for you. In the beginning, you know, you have hope, and you just can rally people. But you know, after dragging on 10 years, 12 years, that hope starts to fade.
It was December – I remember very distinctively – December 2, 2010. I was laying there on the floor in an empty apartment, and I just knew. I used to think to myself that suicide was a permanent solution to a temporary circumstance. I no longer felt that way. I just came to this point of absolute, 100 percent surrender. I just made the decision to let nature run its course and let go.
KIM: After 15 years, Ellie decided to stop fighting. She found an end-of-life caretaker. Then she declared legally that she did not want to be resuscitated or saved for any reason. And finally, she found a rural place in Wildomar, Calif., to be alone and die.
LOBEL: I didn’t tell family. I didn’t tell my closest friends that I was literally moving there to die, you know? I mean, I would talk to them on the phone and just tell them how much I love them, how grateful I am for them being in my life. But I did not tell anyone. And I think, also, too, I didn’t want anybody trying to talk me out of it.
And on the third day, I’d had enough of being in the bed. Something in my gut just said, you got to get up. Get out, and get up, and go outside. This could be the last time you get to feel the sun on your face, you know, so the caregiver helped me outside. We walked about a half a block, and I’m just standing there, looking out over this beautiful field, enjoying my absolutely incredible moment, and this bee starts hitting me in the head. Oh, you’ve got to be kidding me. Why in the heck is this bee interrupting my moment? So I kind of swiped my hand over my head – go away – and it kept coming back. So I thought, OK, well, I guess my moment is supposed to be over.
So I turned around, I started to scurry a little bit down, and all of a sudden, boom. I mean, there are bees everywhere. Oh, my God, I cannot believe this is happening. I am terrified and highly allergic to bees. Instantly, I had that flashback of when I was 2 and went into anaphylactic shock. And the caretaker is – takes off running. You know, he’s screaming, like, running down the street, and I’m stuck there. Holy [expletive], man. And all I hear is this crazy buzzing. It was painful. I mean, they were stinging my whole head and my ears, and I can’t run. The only thing I could do was just cup my hands over my face and say, oh, dear God, this is how I’m going to go. And in an instant, they were gone. They were just gone.
KIM: The caretaker rushed back to Ellie. Then he carried her and took her back to her bed.
LOBEL: My caretaker said, you know, we should take you the hospital. You know, I didn’t have an EpiPen. I closed the door and locked the door and said absolutely not. You’re not taking me to the hospital. Just leave me alone and have them come collect the body tomorrow. The caretaker was knocking. I just wanted to die.
KIM: But Ellie didn’t die, not that night nor the next.
LOBEL: After three days, all of a sudden, the pain broke. I was laughing. I went and I unlocked the door. I went straight to my caretaker and said, oh, my God, you’re not going to believe this.
KIM: Ellie started researching bee venom, Lyme, but the only evidence she found was one small lab study that showed that melittin, the toxic poison found in bee venom, was affective in paralyzing the borrelia bacteria.
LOBEL: I don’t even know how to explain it. You know, is this just a random – all of a sudden, I was in the right place at the right moment and got attacked about – by the right amount of bees? Part of me thought it might have been just a coincidence, but there was just too much that was obvious.
KIM: So with this hunch, Ellie went online and ordered some bees. Yup, that’s a thing you could do. When the bees arrived, she started stinging herself to release the bees’ venom into her body.
LOBEL: I still had my doubts, but I would have really good days, and I started putting together good weeks. And then the second year was so much better.
KIM: Now wherever Ellie goes, she carries around this wooden box.
LOBEL: OK, it is a special travel condo. Let’s see if you can hear them.
KIM: She feeds and takes care of them until they are at the end of their lifespan. Then she uses a pair of long nose tweezers and tries to catch them.
LOBEL: I’ve done it so many times now that, you know, I can catch – probably catch a bee in midair.
KIM: Once she catches them, she administers their sting into her body, but now just one at a time.
LOBEL: And I truly, truly do believe had I not gone through the experience exactly the way that I did, I mean, as – there is no explanation for why this would so happen at the moment where I was ready to go, and I had surrendered. Yes, there is a fear that I could relapse. One spirochete, one piece of bacteria left dormant in my body anywhere, and it will come back. But no, I don’t live in fear of it because if it does come back, I’m attacking it with bees, and I’m armed.
(SOUNDBITE OF MUSIC)
WASHINGTON: Thank you, Ellie Lobel, for sharing your story. Ellie is currently working with researchers to further study the effects of bee venom with potential against Lyme disease. To find out more about Ellie’s work, we’ll have a link to our website at snapjudgment.org. Original sound designed by Leon Morimoto, and that piece, it was produced by Davey Kim.
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This is officially, the longest post I’ve ever published. If you’re reading this, it means you’ve stuck with me til the end. Thank you.