The “invisible” disease I was born with is what they characterize as cyclical: “occurring in cycles; recurrent.” Right now after my last neurosurgery, where a benign tumor was removed, I am considered in remission. The doctors have even gone as far as saying I am “cured.” They also told me this in 2006, after my first neurosurgery. It came back.
My neurosurgeon told me they could not do a third surgery to remove a recurring tumor as it is too risky. I don’t like to think about what that means, but they try to assure me there are other ways they would go about it.
I live with a deep fear that I will get sick again. I try not to dwell on that – live in the moment. But it’s rooted in me – the fear.
When you’ve had an illness that’s cyclical, it’s like you’ve only really lived 50 percent of your life. Those incredible times for me when the tumor was successfully removed or wasn’t for some medically mysterious reason wreaking havoc on my immune system. It’s confusing for the people around me – how can I be ambitious, hardworking, social and happy sometimes, and at other times barely be able to get out of bed?
Is it in my head? Yes.
Right now I feel good – normal, healthy. At times I will be reckless. I will stay out until the sun is coming up. Because maybe this wave of good health is fleeting. I may get sick again. I have to squeeze it all in. Don’t judge me. I am really f***ing happy in those moments. I feel alive.
When am I supposed to reveal to those I am getting to know that I have had this illness? If you meet me during one of my healthy phases, you would never know how sick I have been. I do not wear it on my sleeve, and I do not have any outward symptoms. When I am well, and at my best, I feel like an imposter sometimes. Which is the real me? The sick one, or the well one? Would you still like me when I am sick? When I don’t look good – can’t go out?
I have a very hard time being vulnerable. It’s difficult for those closest to me. I hate asking for help, and most likely I won’t – it makes me feel weak. I know I am guarded. I am working on that – it’s useless. I’ll almost never make you feel like I need you. If you are tough, you’ll manage to get close to me. But, you may get frustrated with me for things such as going to doctor appointments and even procedures alone, going to work when I can barely function, but mostly, what will frustrate you is the shutting down, the pushing you away. It has nothing to do with you, I swear. You might find me alone and crying sometimes, but I will brush it off.
I need to stay strong.
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