I heard her frustration on the other end of the line… She’d been almost four days without internet, tv or phone and didn’t know if the repairman would actually make it out today or if she’d be stuck at the house waiting for nothing once again… On the other end of the phone, I smiled. Not a joyful-almost-a-chuckle smile but more of a sad lopsided grin.
I know that frustration and isolation. You’re in a house, alone, sans any sort of your usual communication and interaction. Just silence. And I became a little reminiscent… of my pregnancy almost 4 years ago and of just yesterday. Today, even. Sure, my phone works, my tv’s always on and I can access the internet- the world- at the touch of my iPad. All things work. But there’s still silence. And our phone conversation perfectly encapsulated the isolation of my pregnancy, the sheer loneliness of these past 6 months. Portions of the last 4 years really. Geez that “looks” long when you see it on paper but living it is even longer, and being forgotten while living is even more painful. It makes those 24 repetitive, predictable hours drag one into the next ‘til you mix up your days of the week and long for the time when you were annoyed your calendar didn’t have enough room to write anymore activity (yes, I still keep a handwritten calendar lol).
That’s what a chronic illness does to you; it turns four days of isolation into weeks, months, and even years of loneliness. And there’s something about being alone with yourself, by yourself, that leaves you raw and exponentially more vulnerable. Because eventually, the concerned phone calls and texts stop coming. The scheduled lunches/dinners/playdates disappear. Everyone’s too busy. People forget about you, and frankly, (which I completely understand) people don’t have anything to say anymore. You don’t have anything to say. One can only hear so much about how sh*tty you feel or how depressed you’ve become… because that’s what you’ve become- your illness. There’s nothing else to talk about. Nobody wants to hear I was actually awake enough to brush my teeth by noon (yay!) or that the 10 seizures I had the night before kept me up until 4 am and I’m just trying to wade through the Mommy guilt of not being able to function up to comedic par for my son. For the hundredth day in a row. And I don’t want to share it. That’s why I stopped calling anyone. What do I have to say that’s not a burden, that’s uplifting? That’s positive aaaand true? I don’t want to bore you, I don’t want to worry you, I don’t want to become the negative friend with whom no one wants to associate. I want you to remember the me you’ve always known.
But I’m tired of fading away; I’m scared of fading away. Lost in the silence.
My friend’s frustration at the resulting inconvenience and isolation is completely logical and I don’t blame her. I don’t blame her because I know where she’s coming from. Not the same circumstances, but nonetheless, she can’t turn on her tv for useless background noise to fill her empty spaces. She can’t surf the web on her computer and admire the pictures from other’s events, and she can’t receive calls from friends checking in throughout the day. Her life is on unpredictable pause. She’s alone. Isolated. Feeling forgotten. And those adjectives resonate all too easily with me.
Epilepsy, loneliness, isolation, vulnerability, repetition- it all grates on you, eats away at the who you’ve always been and creates a you that’s a stranger. A shell. You finally become so cocooned that the blare of the tv no longer serves as a substitute for companionship, the internet no longer entertains and the phone no longer represents communication but instead, a lack of worth when it doesn’t ring nearly as often as it used to. Chronic illness becomes chronic loss. Becomes silence. Becomes a stranger. Becomes being stuck at the house waiting for nothing once again… Sitting alone on the couch holding your pregnant belly and staring through the muted tv or sitting on the couch with a toddler bouncing all around you, feeling guilty but too lost to function…
One of these days my friend’s internet will come back on, the phone will ring and the tv will once again project laughter and entertainment. Her life will be back to normal, feel full…
What I wouldn’t give for only 4 days.
Epilespy sucks. Although we don’t have children, I understand the isolation, not wanting to talk about it and the lonely road.
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Thanks for leaving a comment. Although I wish none of us had to feel this way, it always helps to know others have been there too…
It sucks walking the road, but I’m glad not to do it alone. I’m working through a lot of shame in dealing with Epilepsy. I’m so thankful for your blog.
I know it doesn’t help much. But I understand, my friend.
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I wish we all didn’t have to know what it’s like but thank you for making me feel not so alone… :)