This poem was written by my teenage daughter. Any parent with Chronic Lyme Disease knows how hard it is to hide the pain, day in and day out. You want to shield your children….but then the tremors, the weight loss, hospital admissions…all become your new normal. As much as it hurt to have them ever witness such suffering, it would have hurt them most if I had given up. There will be a second poem one day, about coming through the other side. I was as sick as one can get with this insidious disease, knocking on deaths door for too long….now I am reemerging, and I want everyone reading this to know, that although it may be sad…there truly is hope. Reach out to others in the Lyme community, and connect with those who truly get it…all of it.

 

Disease

by Emily Rain

She was a mountain,

She stood taller than the highest skyscraper

Letting nothing get in her way

Now she is among the stones and pebbles that lie beneath your feet.

She was a hurricane

More powerful than anything you’d ever seen

She made everything seem effortless

Now, she’s only a gust of wind

She was a diamond in the ruff,

Stunning and gleaming so bright

Anyone in her presence was blessed

Until it all changed

In a matter of time, she had transformed into somebody entirely different

The number on the scale decreasing more and more

If she attempts to walk across the street, her knees shake, bringing her to the ground

The nights without sleep are unbearable

Her body shakes, it’s unstoppable 

She’s now unrecognizable.

She sits alone in a room where medical supplies cover the floor she walks on

Never thought she’d end up this way

No.

Never thought that tiny bugs would invade her brain,

controlling every waking moment of her day

No.

She’s no longer seen as the one she once was

Nor do they treat her how they once had

Pity and sympathy seep through their pores regardless if they truly understand her suffering

It’s almost as if she’s submerged under water

Wrists and ankles chained to the ocean floor

Forcing her to struggle without a breath of fresh air

Struggle at breaking free

Struggle at being herself again

She’s helplessly falling deeper and deeper into an abyss

Slowly,

Unknowingly,

Still yet to hit bottom

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Well, I had hit bottom, and each time I thought it could never get worse…it did. But just as suddenly as this disease rendered me disabled, slowly, but then all at once……my recovery is very similar. I began seeing glimmers of hope in October, 2014. In February, 2015, my immune system kicked in, and I had my first true fever in 3 years. It is now May, and since February, I slowly stopped needing my wheelchair, I no longer take 3 blood pressure medications daily…I don’t take any! My POTS is SO much better, I haven’t had tremors since late October, and I recently began driving and spending more time up and about, then down and out. If you read my full story in the main menu, you will see that I was hit with far more than just Lyme Disease. Believe me, I know having Lyme alone is enough to bring you to your knees, so if I can get to the other side…..anyone can. Besides my husband, children, best friend, only a couple family members, and my online community of fellow fighters….I had no ‘physical’ support. My husband had to suddenly take on every single thing I once did, on top of working, and being a father. He was my caretaker, my rock. I could no longer cook meals, drive, go grocery shopping, run errands, mow the lawn, weed the garden, walk the dog, vacuum, do dishes, or even wash my own hair at times…..he took on everything. The true heroes in my story…..are my husband and children. They sacrificed three years of their lives, to keep me as comfortable as they could. They did it without complaining, and so selflessly adapted their lives to be with me. I will be forever grateful for them, and anyone that showed me such kindness through such a dark period.

I can only hope that this website will continue to give some hope to those that are desperately searching for some. I assure you…you are stronger than this disease, whether you know it now or not…..you are.

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