Shine a Light on Lyme

Date: 05/05/2023
Hello my dear readers. Today I would like to share with you my speech at Project Lyme’s latest event in Chicago on May 1.

Project Lyme has made building lightings a yearly program to raise awareness and educate the public about Lyme disease. This year, they partnered with Illinois Lyme Association to add Chicago, IL with the historic 875 Michigan Avenue lighting its spires green in honor of World Lyme Day for the very first time.

Thank you in advance for reading:

When the life you once had crumbles completely, how do you find the strength to carry on?

When doctors, and friends, and family stop believing in you, how do you keep fighting for one more day?

I definitely don’t have all the answers yet, but I will say this:

Back then I was bedridden, counting every minute of pain. I could barely talk, or read, or even think. My days were spent waiting in agony for the sleep that sometimes paused the suffering. I was often close to suicide, feeling as if I was literally in a fight to the death.

And now look at me…

Right here, in me, you are seeing the power that tailored treatment interventions can have in the face of the disease I have: Lyme disease. Yet you are also seeing the privilege I have in being able to afford these kinds of treatments.

I know not everyone can be so lucky. Which is why I want to share with you a little of my story; to show you that life is possible beyond Lyme–and that your generosity can literally save people’s lives.

I want you all, for a moment, to think about how empowering that feeling is; how much it lifts you up, to potentially save a life.

Now, I want you to imagine giving that beautiful energy to someone who is suffering; who has been suffering without any power at all.

Because that’s what Lyme disease feels like: as if someone has taken all your power, and you’ll never get it back. As if every cell in your body is dying a million deaths, all at once. It’s as if you’re being tortured, alone in the prison of your body, the only thought in your head repeating: why me? What did I do to deserve this? 

It wasn’t always this way. It’s strange sometimes to remember the active young girl I once was, always in dance and activities. I had so much social energy that it was a monthly thing to visit Upstate New York with friends. We would act like free teenagers, away from our parents, hiking for hours, swimming in the creek and sleeping in tents overnight…sometimes without a sleeping bag. Life seemed powerful, big, fun, and endless.

And then, back from one of these very trips, my power began to be stripped away. I began to notice strange symptoms: terrible joint pain, fatigue, dizziness, rashes, and brain fog.

Then when college started, my symptoms got worse.

Doctors said I was overworking myself. By grad school, I was blanking out while seeing patients, and I could barely finish my work–yet no one gave me a Lyme test. I remember needing to take naps in my car just so I could drive home without collapsing.

It wasn’t until then that I started thinking I had something really wrong with me; that it wasn’t just years of sports injuries; that I was really sick.

For the next 15 years, we struggled with that. We struggled to take care of ourselves, and each other. For a while we maintained our hopes and dreams, until our health got the better of those dreams and we had to let them fade.

Soon we became quiet in our suffering. We cried together when we had the energy, knowing too well the preciousness of good health.

And we were seeing doctors; yet they had no more answers than we. There were also very few treatment options at the time, and we struggled more than we ever had, watching the loves of our lives disintegrate before our very eyes. 

Truly, in our exhaustion, we found hell. We watched life pass us by, all while we seemed to shrink into the background, cloaked by our illness, waiting for death.

And then, on one of my horrific days just five years ago, I felt a shift. Like falling down a well and finding a rope to pull yourself up, I suddenly knew I couldn’t let Lyme win. It wouldn’t take me; and I couldn’t let it.

To this day, I don’t know where I found the strength to make that decision, but in knowing so many others in this community, I’ve discovered we all have this secret strength within us. 

That with our last breath, we will still fight with everything we have. 

For ourselves and our loved ones, we will fight to live on. 

Only then did I become aware of that power. Instead of ‘why me’, I used my bedridden days to ask: Who could help?

Like a lightbulb, one day the name Daisy White appeared in front of me. If you don’t know, she is a powerhouse who has helped countless Lyme patients, and although it took me hours to type out a short inquiry email – and although I literally couldn’t speak – she agreed to take me on. 

I’m happy to report that with Daisy’s help and guidance, I have been able to regain some of the power I once had. I’m starting to reawaken that life-loving girl who’d been forgotten so long ago. As you can see, I can walk a bit. I can talk, and I want to keep talking. It’s almost as if I can finally see the light at the end of the tunnel.

That isn’t to say the healing journey has been easy. Disease is a deadly, difficult test. We, Lyme patients, quite often find ourselves wishing that every day is our last. We may feel like we’re making good progress, only to hit rock bottom again and again, living from one relapse to another. We all face a lifelong struggle with this illness.

It is a life I wouldn’t wish upon anyone. It is a life that sees us become our own doctors and nurses; our own advocates to keep on with the business of living. It’s a full-time job, and through that I have discovered how little investment there is for Lyme diagnostic testing. 

That’s why we need to invest in better patient care and treatment–because people like me are living proof that a little can go a long way towards changing someone’s quality of life.

My recovery is real. I am not fully healed, but I know it is the new doctors, treatments, and biohacking that have gotten me here, in front of you, sharing my life.

I know, too, that without Daisy’s help, I would either be dead or I would still be fighting against ridicule, discarded by the medical community as ‘crazy’, fighting this battle on my own…and so I feel blessed.

It is therefore with thanks to all of you, to my Mom – who has been my rock, my love, and my support – to Daisy, and to the fellow Lyme warriors in this room and out in the world that I close this short speech by saying:

I want the best for us all, and I know that together, through our collective work and generosity, we can absolutely reduce the impact of Lyme and save people’s lives!

Thank you.