When we’re young, we get scared, and we go to our parents or people we love for support and comfort. We cry, we talk about the boogeyman, we complain of feeling sick, of things that hurt, of things that frighten us. At what age does that stop? And why?
An essay on ButYouDontLookSick.com titled, “It is 5am. It’s a horrible, ugly hour to wake up, not yet morning, not quite night.” by Christine Miserandino inspired me to write this essay of my own. I have a 5am, only for me, it’s 1am, 2am, 3am…it’s any hour after a normal person’s bedtime, namely my husband. When he sets off to dreamland, my waking nightmares tend to haunt me.
I am a night person, but the night is the worst time for me. In the darkness, things hurt worse and I feel the pain exponentially more. And I know that it is my anxiety that heightens the feelings, but I am helpless to stop or change that fact. I worry…I worry that the pain in my arm and my chest and my jaw are because of my heart, despite having been checked out by a cardiologist. I worry that the headache and the pain in my neck that I know is from clenching my teeth when I sleep (and am awake) are signs of an impending stroke. And the anxiety makes my heart beat faster and my breath come less easily…but I worry those things are signs that I’m dying. The pain the back of my thigh, is that a blood clot? Will it race from my leg to my heart or my brain?
And what will happen to my husband and my parents and my siblings if I die? How will they suffer with the pain of loss? How will they cope with the hurt of never being able to see me again? What will happen to the friends I’ve made that I may not have spoken to recently? Will they be haunted by guilt of not staying in touch more often? Will they be crushed by their conscience that often told them I wouldn’t go out or spend time with them because I wasn’t well…and they didn’t believe me? Who will watch my precious dog all day when I’m gone? She can’t go 8-10 hours without time outside during the day…my responsibility since I work from home. Who will comfort her when the storms rage and the fireworks explode nearby?
And in the darkness, these thoughts come to me, compounding the pain and anxiety I’m already feeling. I feel crushed by the weight of all of this, and yet I am unable to make any of it go away. I sit up—in the only position that comforts me—shoulders hunched, body curled over, legs crossed, knowing that even as I do, this will only intensify and lengthen the duration of my pain. I cannot tell you how many nights I’ve spent like this, sometimes struck with dizziness that keeps me off-balance and feeling like I’m on a rocking sailboat, since I first became ill. Diagnosed with multiple syndromes that are invisible to everyone else but me. Though there are names to categorize what I deal with, they are mostly incurable, and I am unable to take medication for any of them because of my sensitivities. So when I’m flaring, I suffer through my days by hiding away, either physically or figuratively, from the people around me. My husband sees most of it, my mother recognizes a lot of it, my siblings offer polite sympathy, but no one else lives all of it but me. And at night, I suffer alone, because the guilt of dumping any more of this on my husband—my main support—is too much. He wakes early, works long hours to support us, spends much of his time taking care of me and himself and the dog when he is home. I cannot wake him at 1 in the morning to tell him I’m hurting, or I’m afraid. He can’t fix it—which is what he wants to do—and telling him only to have him feel helpless is even more of a burden to both of us.
Alone in the dark, I do not reach for my husband and his comfort, I cannot sleep, I can only be awake with my demons. And for those of us who suffer with diseases and syndromes and…well, life, sleep is what rejuvenates us, what refreshes us, and what repairs us. So not being able to sleep only makes everything worse. There have been nights when I never set my head on a pillow, and when my husband wakes, I am quick to put myself in a prone position so he doesn’t know I’ve been up and in that horrible physical position all night. And to my shame and embarrassment, there are mornings where I wish I could beg him to stay home with me, so I am not alone in the light. Because alone in the light when I’m feeling this way is equally as frightening as being alone in the dark with him beside me. But I keep my thoughts to myself, because he is the bread-winner, and he has to keep his job. Asking him to stay home is a luxury we cannot afford often, and I must save it up like he saves his sick-days to take care of me. I must only ask when I really really need it. But he never hesitates to offer, and he never hesitates to come home early. I am thankful for these things, don’t get me wrong. I am lucky in this instance, because although he doesn’t have the capability to really understand, he does try.
Reading Christine’s essay brought tears to my eyes, because I could literally feel her pain, and I could feel her distress, because it is my life as well. And when I tried to post a comment, I wrote three, and deleted them all. Embarrassment raced through me because I didn’t want people to know how I feel in the darkness of my illnesses. It was embarrassment because I couldn’t admit how I feel, and embarrassment because I was embarrassed. So I posted nothing, and I tried to explain to my husband why I needed the extra few minutes to read Christine’s essay before turning off my laptop. And I reminded him of her “Spoon Theory” so he would know who I was talking about. And I admitted to him that I understood everything Christine had written, because I’ve lived it myself. And I admitted to him that I’ve never really shared all these intense and intimate fears even with him. Because I was embarrassed and ashamed to feel those ways.
And in the light of the morning, I was thinking about children, and how they can admit their fears. How they seek the comfort of those they love to help them assuage their fears. And yet, I, as an adult, can’t even admit to or seek comfort from the one person in the world I know loves me more than anyone in the world. He’s never put me down, he’s never made me feel weak, and yet I never told him the things I’m admitting here in this essay. Why? What am I afraid of? Why can a child speak so easily of their fear, and ask so easily for comfort, when I can’t?
But I know deep in my heart it is the fear of being a burden. I am already that, I cannot dump even more on the person who cares for me, who works hard for me, who needs to be healthy because I am not. And it is the fear of how people will treat me. I don’t want to be pitied, or coddled, or seen as a “disease”…and I don’t want to be treated differently.
I’m sitting here writing this and I can feel the tears dripping down my face. I’m not sure if I’m crying for the life I have lost, or what I feel I’m taking away from those around me. I only know when I’m in the middle of a flare, my life is different, and I hate it. I hate the fear that engulfs me and the anxiety that plagues me. I hate that it changes me into someone I would never want to be. And I hate that it makes me secretive about how I feel and who I am. That, most of all, is why I’m writing this.