Caught in the Lyme-Light (Part II)

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Caught in the Lyme-Light
Part II

A Lyme-Disease Story

Read:  Part I

Late-Stage (Chronic) Lyme Disease with a co-infection of Babesia. Often a clinical diagnosis, my doctor had to only look at me and listen to my medical history and list of symptoms to diagnose me. The labs (the Western Blot test that other doctors had refused) would later confirm the Lyme pathogens in my blood.

My mom cried and my dad hugged me and I couldn’t begin to express my gratitude for all the support of family and friends and this doctor who, in every single way, has saved my life.

But this was just the beginning. Putting a name to this enemy that had ravaged my body and stolen pieces of my life was only one battle won — I would have a long way to go, but I was willing to fight.

Because now I could believe again that I have a life worth fighting for.

Ticked Off: Part II

They set me up with a prescription for heavy-duty antibiotics and vitamin supplements to begin treatment right away, handing me literature and offering me reassurances and themselves as examples that though it’s a rough journey, though it’s the nature of this particular beast of a disease to get worse before I get better, I can be healed.

And as I shook their hands and thanked them over and over again, one thought kept ringing in my mind:

I’m going to get better.

For all the strength I needed to fight for a diagnosis, I would need to conjure that much more in the months (and possibly years) of treatment that’s to follow. As I write this now, already six months into treatment, it’s hard for me to remember those early days when I couldn’t lift my head from my pillow, when I couldn’t walk on my own…

Life has a way of anesthetizing the negative, healing not just your physical symptoms but your very spirit so that you continue on.

Because I’m in such a rush to get better, my mom and dad have to keep reminding me that I’m still in the middle of treatment, that I’m still healing. And while I’ve come so far from where I was — while the pain has lessened and the mind fog is clearing and I can return to work for a few hours a day — every day is still a battle.

I didn’t realize in the beginning what a war this would be, how many battles would have to be fought or just how many lessons there would be to learn.

I’m passionate by nature. I have goals and dreams for my future; I have a love for life and the living of it that often translates into hope for that future. I work hard and try to be the best person I can be — for myself, for the people I love, and for this world that we live in.

But when you pull one of those threads, when you lose faith in yourself and your future, how quickly the rest of it can unravel…

The herxes — those reactions that are a sign of Lyme Disease wherein the germs die off, releasing toxins that exacerbate your symptoms, making you feel worse before you get better — began almost immediately after I began taking my antibiotics. I was sleeping 18 hours a day, the burning sensation in my legs only intensified, making it nearly impossible to get out of bed or, when I was able to walk, I only made it to the couch before falling asleep again. The nightmares and vivid dreams were so bad that it took half the morning to calm my racing heart and separate the dream from the reality. When I was awake and lucid, I spent that time reading or writing or trying in vain to keep up with friends because it was the only social interaction I was getting.

All the while, I berated myself for not being able to do more. I cried to my mom that I should be at work. I worried to my dad that I would lose my job if my disability paperwork didn’t go through. And while my superiors have always been nothing short of accommodating and wonderfully supportive, I feared I would lose the respect of the people I worked with.

Friends tried telling me that I shouldn’t care what anyone thought, that my work ethic and character thus far would speak for itself and, besides, what I was dealing with was very real, very scary, very debilitating, and I had to concentrate on my health and healing. But rumors and whispers that mocked me and my situation and questioned my character reached my ears, and the darkness that I was in fell darker, still, as I couldn’t believe that the people I had trusted would turn against me.

It was the anger at their ignorance, the disappointment at their lack of compassion, and the knowledge that while I may sincerely care about others, others don’t necessarily share that same outlook that taught me my life lesson. It was in showing me their true colors that my own strength finally shone:

When The Devil’s On Your Back

It’s not something you choose or can control. And for anyone to think otherwise shows a lack of understanding and compassion on their part, not a failure on yours. I used to apologize for the inconvenience that this disease imparted on others, feeling bad about feeling so bad. I used to think, if only I could make them understand what it’s like…But I’m learning — oh, I’m not done learning — that maybe not everyone wants to understand, and maybe that’s not a reflection on me but, rather, on them.

Having a truly horrifying and debilitating disease disseminate throughout your body — working its way into your neurological and central nervous systems –  isn’t something you would ever choose. Having it change your life — as you fight to save your life — isn’t something you can control.

Life happens. Health happens. And I’m learning that the only thing I should be worried about is this road to recovery.

Not everyone is going to understand. Not everyone is going to ask you how you are and really listen or do their own research on a disease they know little about so they can understand it better for themselves, for you, and for others. When you find someone who does that — someone who listens attentively at every cry of pain, who checks in with a daily “how are you feeling” or just a “hello” to make you smile, who does their own reading and let’s you ramble on and on about the science of it all because it fascinates them as much as it affects you — you hold onto them. Those are the lifetime friends.

Others don’t care. Or maybe they care — maybe it’s insensitive to think otherwise — but not to the extent where they’ll make an effort to understand your suffering.  And maybe that’s actually a good thing — because it means they’re not suffering, either, and I wouldn’t wish this on anyone.

But knowledge is what breeds awareness, awareness is what precedes understanding, and understanding is what leads to compassion. And I can’t excuse willful ignorance in this world — for any issue, for any reason.  I just can’t. Maybe that’s my flaw — in expecting too much from people and in wanting to please everyone.

Even when not everyone can understand…

Vulnerable

But this deep depression that seeps into my heart, these dreams that linger long after I’ve awakened, and these thoughts that haunt me in the middle of the night, saying “I’m alone, I’ll always be alone, that I have nothing left to fight with anymore…” It’s this that scares me most. Because of all the symptoms, it’s these thoughts that are the most powerful, the most destructive.

I don’t want to fight anymore.

I was — I am — fighting a disease that doesn’t kill you, but is deadly. It’s deadly in that it’s a multi-systemic disease that mimics Multiple Sclerosis, Huntington’s, Parkinson’s with symptoms of Chronic Fatigue Syndrome/M.E., Fibromayalgia, hypotention and cardiac arrhythmias, and encephalitis. It’s deadly because the germ wants you alive, but the symptoms — the psychosis — can shout so loudly that you want to give up and give in and nothing, not the promise of tomorrow or the support of friends or the love of family or the saving grace of a dog, can keep you holding on.

I almost let go.

I almost let go.

I was so close to letting go.

Me, this lover of life, whose faith is so strong, who believes with all of her heart in holding onto hope when all else fails, wanted to end it all.

And if I had listened to that helplessness filling my heart, if I had succumbed to the darkness that filled my mind, offering no light as a guide, if I hadn’t made myself go to bed and close my eyes and promise myself another tomorrow…

I would have.

I didn’t.

29 and Alive

And, I’ve since realized, I wouldn’t have let myself give up, either. Because while I was at my weakest physically and sometimes emotionally, there existed in me a strength — a power, a fighting spirit — like I’ve never before known that urged me onward, that struck a fire in the deepest parts of my soul, that whispered in my darkest moments,

“You are a survivor.”

I’ve tried to remain as open and transparent about this journey through this disease because 1) that’s just who I am, I have nothing to hide 2) this disease is incredibly isolating, and that loneliness feeds the negativity, and the support I’ve received is what has helped me to survive each new day 3) I believe in awareness and education, and the more people who learn how common and what an epidemic Lyme Disease is now, the better they can help themselves or have compassion for others who are dealing with it.

 I can’t change the world. I can’t change the minds of others who don’t want to learn — for their own health or for the support of others. But maybe I can be a voice for those who, like myself many months ago, was shouting to be heard with no one to listen.

Because I’m listening.

And I’m learning.

 

 Always through this, I’m learning: about the disease itself, about its effects on the body and mind, on its effect on the human spirit.

And, perhaps most importantly, I’m learning the big lessons, the life lessons…

 

When you’re stuck in a darkness — whether from disease or trauma or some other suffering — from which you can’t emerge, you find whatever you can to hold onto: the pure heart of an animal, the encouragement and smiles of a friend, the unwavering devotion of family members, the fulfillment of a lifelong dream, or even the purpose of a daily job.

But then will come the morning when the light begins to dawn, when you open your eyes and realize that your reason for holding on is the beauty and joy and love of life itself.

Your life.

Your very self.

And you’ll discover things about yourself that you seemed to have lost along the way, you’ll find a renewed strength in a once-fragile spirit, you’ll find there’s a future meant just for you.

Be Brave.

{ 2 comments… read them below or add one }

Linda Piasecki November 9, 2012

Hello Susan,
I just finished reading your blog and as I read it I recalled all the days and nights my daughter cried with the same feelings you expressed in your writings. She, too, went from doctor to doctor trying to find out what was wrong. She, too, had to seek to find the answer. She had Lyme Disease for an estimated two years before the symptoms hit hard. You perfectly described each symptom as she described to me when she experienced them. I, as her mother, felt helpless and, in fact, still do knowing that I can’t take away the pain etc.. I would give my life to give her back hers. She continues each day to push on to have some kind of normal life. Friends are scarce. Why? because she can’t make all the outings, parties, gatherings. They just get tired of hearing ” I not up to it today”. My daughter and I are firm believers in Jesus Christ and that is what gets us through the real rough times.
Thank you for your writings. I wish you many blessing in your life. Continue to fight! I hope to read that you are in remission one day.

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Susan Pogorzelski November 9, 2012

Linda,

I can’t tell you how many people I meet who have or know someone with Lyme Disease. It seems everywhere you go, everywhere you turn, you meet someone who understands because either they’ve been through it or they’ve watched someone they love go through it. The degrees of separation are minimal; I can’t quite believe it — part of me is grateful in knowing we’re not alone and that we can support each other, but the bigger part of me hates that so many people have to suffer.

I was so sorry to hear that your family has to deal with this disease, too, but your daughter is so lucky to have a family who supports her. My own has been with me every single step of the way and it makes such a difference — they have been my lifeline. But when you say that you feel helpless, I know that’s how my own Mom and Dad feel, and, even as their daughter, as much as I know parents want to take the pain away from their kids, I wish more than anything to take that worry and fear away from them.

The one thing that we can all cling to throughout this disease — patients and loved ones alike — is hope — because as difficult and disabling as it is, we can get better, and we’ve already gotten through some of the hardest-won battles. That is, finding someone to believe in us, finding a name, finding a reason for these symptoms. I’m so glad to hear that you have a doctor you can trust and that you have your strong faith. I know, too, how dark the days can seem without it.

Please extend to your daughter an invitation to reach out to me — and I hope that you feel comfortable to remain in contact as well. It’s so important to have a support group and for someone to be able to talk about it with and truly understand can mean a world of difference. As lonely and isolating as this disease is, no one has to be alone in it — not those of us diagnosed with it and not those who are supporting us…Because I know from watching my own family that your job is just as hard and please trust me that we are so grateful for it.

Wishing you and your family strength and healing!

-Susan

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