May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!
Editor's Note: The following appeared as a blog post on Susan's personal website, dated December 11, 2012--nine months after she was officially diagnosed with late-stage, chronic Lyme disease.
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 this, 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.
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Will you show the world you're LymeBrave and join us for our Lyme Awareness Month campaign? Contact us at firstname.lastname@example.org to find out how you can help#shareyourstory!