I spent most of yesterday afternoon and evening in the ER with a friend — another Lyme patient who, coincidentally, I met while at my doctor’s office and who doesn’t live too far from me. She was having heart palpitations, feeling weak, and had been passing out; I told her that I would meet her at the hospital.
She didn’t have to go alone — not where they fix broken bones and bandage wounds but look the other way at true suffering when the tests are inconclusive, when they question you and doubt you and dismiss your symptoms…She didn’t have to go alone, I wouldn’t let her.
When I was too weak, my mom and dad fought for my voice to be heard. Knowing exactly what she’s going through, living it myself, I was going to be there for her. I would fight when she couldn’t.
And I did. When we told the nurse and doctor about her late-stage Lyme, that doubt was immediately evident. And the questions began: were you tested for it, who are you seeing, what kind of medicines are you on, how long have you been on them?
Lyme manifests itself is troubling ways, infecting every organ (including the heart and brain, which itself is an organ), especially in its late-stage, when it’s had years upon years to disseminate throughout the body. And during treatment, while some symptoms may dissipate, others become more prominent in this illness of extremes, where everything is intensified.
But there is such a stigma and controversy wrapped around the disease that proper care and understanding become virtually non-existent when you need it most, leaving you discouraged and frustrated and even betrayed by those who have devoted their lives to protecting and healing others.
The tests we asked for were inconclusive and they ignored the need for others. The doctor suggested it was her medicines — the very medicine that has been saving both of our lives — and discharged her. There was nothing more we could do, but we knew that, we know how it works. We know it’s going to take a long time until the horrors of this illness spread, until we’ll be met with sympathy rather than doubt and questions.
But now it feels a bit hopeless. That’s why I sat with her, trying to make her laugh, just sitting in silence when she needed that, too.
Because I needed her to know that there was hope, that we would continue fighting, and that she would never ever be alone.
Not while I’m around.
This is the worst part of day — that time between being faraway in dreams and being awake and distracted by work, when the reality of all that is happening and has happened sets in.
It’s when you hear people passing outside your window — teenage girls on their way to school, shoes slapping against the concrete as runners rush by, older ladies laughing as they power walk wherever they’re power walking to. I wonder if they have a destination. A part of me thinks you should always have a destination.
It’s when you hear the outside life slipping through the cracks beneath the door that you realize how lonely you are within, how, though you have so much and are forever grateful and truly blessed to not have had to sacrifice much for this illness, you realize what you’re missing. You realize what you’ve lost.
You realize you’ve lost yourself.
Because who are you without this illness? It heightens everything, its symptoms ranging from physical to neuropsychiatric, and it all seems to be a part of you now. It’s been a part of you for most of your life, only you didn’t know it, so where does the illness — these symptoms that affect your very personality — end and where do you begin?
The way you look at the world, the way you interact with it — is it all due to this disease enhancing a penchant for reflection and solitude, manifesting itself in a withdrawal from the world? Does how deeply you feel, the senses and empathic nature and vicariousness that comes so easily come at all because of heightened sensitivity?
Is happiness really only this disease-induced mania? Is sadness only the other end of depression?
I feel like half a person, a bit broken and weary after spending each day fighting: fighting for your health, fighting for your livelihood, fighting for some peace of mind and a break from the fighting.
Because when every thought can trigger an episode of Lyme-induced bi-polar disorder, when every decision has its consequence for how fast you can relapse, when every action has its limits, it takes all your willpower, all your strength, and all your control to focus on the present, to try to be a part of the world when you feel so separated by it, when just living is hard enough, when just being becomes surviving.
I don’t know what’s real anymore. Or maybe I do — I know that what’s important is real: my family and friends and the love and support I receive from them. But there are days when I can’t reconcile who I am on the outside with who I am inside. This. This is real, right here — this bare-my-soul emotion. And the feelings of contentment are real and the happiness for others and sometimes even the courage to get through the day. Everything I’m able to write and express is real because it’s internalized, projected outwards. But outside of myself, that person you show to others when you’re around others and not protected by a barrier screen, I can’t be sure.
When I’m at work, I have to quiet the pain and control my thoughts for fear of slipping back into a darkness where desperation sings, to distract myself from this suffering and uncertainty of a future. When I’m with friends, though I try to relax and be who I am inside — that real Susan, that easygoing, jubilant, lover-of-life, carefree Susan — I still feel so guarded, like I have to protect myself, like anything can hurt me and if I hurt any more, I don’t know how I’ll come back from that.
I’m in survivor mode. All the time. And I don’t know how to lay down that weight. I don’t know how to let go of myself, of the one thing I’ve been so desperately trying to hold onto through all of this.
Because I don’t know who that is right now, without this disease.
Because I don’t know how to let go and try to find out.
Because I don’t know what will happen once I do.
I decided I’m going to start using this space more, now that I’ve (kinda) figured out how to post from my phone.
This is going to be what Twitter once was: a place for all my thoughts, unfiltered. It’s the deeper, sometimes harder stuff: the in-the-moment emotions about dealing with my illness (late-stage Lyme Disease/Babesiosis) and the life philosophies and musings that don’t fit into a blog post, that have become too personal for a seemingly depersonalized Twitter, and that don’t flood my FB feed and annoy/worry my friends.
As a writer and an overly sensitive person by nature, I need a space to express myself, so I don’t suffocate in the emotions. I should probably journal, but I’m going to share it instead. Because these are the as-you-go thoughts and apparently it’s what we do in 2012.
This is my heart and my mind, for better — but probably for worse. I promise to keep up with the pretty pictures and cool quotes in between.
As you were.