Finding Perspective In A Life Under Water

photo: ThinkStock/Comstock
photo: ThinkStock/Comstock

“Darkness has a hunger that’s insatiable and lightness has a call that’s hard to hear.”

-Indigo Girls, Closer to Fine 

Do you know why I hate drama? Aside from the fact that negativity breeds like a voracious beast, it’s just so damn wasteful. So much time and energy can be wasted on drama. And almost all drama is manufactured, created… and life is full of enough hard stuff.

I DON’T DO DRAMA.

Because I know what it’s like to have good days and bad days. I know what it’s like to have a day so bad you feel like you’re drowning. Like you can’t breathe. Like there’s no way out.

I know what it’s like to watch someone you love live in unspeakable pain. I know what it’s like to spend the night with your brother in the hospital. Watching him writhe in pain. Begging you to put pressure on his spine, to do anything to make it go away. To run down the hall begging nurses to do something. Help him. To pull them out of other patients’ rooms. Because those patients weren’t in his kind of pain. Because those patients weren’t 16 year old kids. Because those patients could wait because your brother was in pain.

I know what it’s like to watch the nurses shake their head in sad resignation because the doctor’s orders don’t include the kind of pain meds he needs. And it’s the middle of the night. And without a diagnosis no doctor was going to call in heavy duty pain meds.

I know what it’s like to hear a diagnosis. To steel yourself before walking in to the hospital room to hear the verdict. To send out positive hopeful thoughts. To will good news. To be full of forced optimism and hope. To have that all violently wrenched away from you in one moment. With one statement from the doctor. With a diagnosis. With the words “Stage Four” with the phrase “We have seen some cases of survival.” To run out of the room and abandon your family because you can’t breath and to collapse in the hallway in convulsive sobs. And to be ashamed because everyone else was keeping it together.

I know what it feels like to find out the next day that the point on his spine that you were pressing on the night before… that you were leaning in to with your entire body -sweating and grunting with all your might because he was begging you to- to find out the next day that you were pressing on a bone tumor that was eating into his spine. I know what it’s like to be hit with the sick realization that you were hurting him. To feel the bile in your throat and the panic of understanding. That while he was in more pain than most of us will ever experience that you were adding to it unknowingly. That you failed at helping him. That your brother, eight years younger, who you had always felt so protective of, that you had let him down when he needed you most. I know what it’s like.

I know what it’s like to have a bad day.

For me, any day that the people I love are healthy is a good day. Any day that someone I love is not in pain is a good day. Any day that is not riddled with worry and helplessness is a good day. Any day that you can reach out and hold someone you love is a good day.

Sometimes I need a reminder.

Last year I got a big reminder. One that knocked the wind out of me. I was having a bad day. The kind of bad day made of small, annoying things that seem much bigger. That can, if you allow it, take over and sour your mood. I was grumpy and caught up in whatever petty annoyances were going on in my life. Stuff so unimportant that I can’t even remember what they were.

I was sitting at swim practice grumbling internally and generally feeling sorry for myself.  I distractedly scrolled through Facebook until I realized there was a private message. It was from my high school best friend. She and I had lost touch after college and had reconnected a few years earlier on Facebook. Intrigued, I clicked on the message, expecting to see a greeting, a “How have you been, let’s catch up” type of message. I started reading and I felt like my heart actually stopped beating.

She told me that her daughter had been diagnosed with a horrible, rare disease months earlier. That she is only just beginning to be able to talk about it. On the spectrum of horrible diseases, this may be the worst. And I’m not being even a tiny bit dramatic. It affects young children. It deteriorates their brain. It deteriorates their body and their muscle function. It sounded like a horrific combination of two of the diseases I had always feared most: ALS (Lou Gehrig’s Disease) and Alzheimer’s. Except this happens to kids. Little kids. And there was no treatment. No cure. Most kids don’t live past their teenage years.

I was overcome as I was reading her words. I looked at my son swimming his laps. At my daughters sitting next to me. I felt like I wanted to scoop all three of them up into my arms and hold them indefinitely. I wanted to reach through the ether of cyberspace and hold my friend. My friend who I hadn’t seen in years. With whom I’d shared years of friendship and good times and laughter. And now she was going through unimaginable pain. She knew what it was like to have a bad day. 

My friend doesn’t have time for drama. The world looks a lot different from the perspective of grief and fear and survival. You don’t have a moment to waste on whispers of “He said, she said.” You don’t have time to worry about what other people think. You don’t have time to dissect every interaction and analyze how it might have been received or perceived. Because you are fighting. You are fighting to not drown under the incredible weight of fear.

My friend is amazing. She is fighting for her daughter. She started a blog. She published her very first blog post. It was about her daughter. It got Freshly Pressed (a huge honor in the behemoth WordPress world). The next day it got picked up by The Huffington Post. Donations started pouring in. The community came together. People are raising money. Raising money because there’s a trial for a new treatment that won’t happen without money. A treatment that shows promise for a disease that had no hope until now. One that has shown reversal of symptoms in the lab.

A possible cure.

My friend doesn’t have time for drama or politics or any of the things that get us worked up or angry or caught up. She is fighting for her daughter’s life. She and other parents. When time is precious and every moment is to be soaked up and absorbed, she is spending countless hours raising money to try to save her daughter’s lives. When all she wants to do is cuddle with her daughter. To read with her and watch her play, she is organizing and promoting and spreading awareness. She is fighting to have a good day. A day with a daughter who’s healthy. A good day when she can hear the words “She’s cured.”

That’s perspective.

The good days that I, that you, that most of us, take for granted… she is fighting for that. My brother fought for that. While he lost his fight with Cancer, he had plenty of good days. He made good days… good moments… he insisted on laughter and fun even when hooked up to tubes and machines.

So no, I don’t do drama.

Because life is short.

For some it’s unfairly and heartbreakingly short.

Because we will all have some bad days.

We will all feel fear and pain and loss. It’s inevitable. So on those days when you aren’t feeling pain… when someone you love isn’t hurting… when you’re not feeling crippling fear… Those days where you don’t feel like you’re drowning…

On those days… enjoy it. Don’t let anyone or anything take it from you. Wrap yourself up in the warmth of a positive thought in the face of negativity. Cloak yourself in comfort when the world throws obstacles. Protect yourself and treat yourself gingerly and with love. And when you see someone who’s struggling, even if they’re spewing anger… give them a hand. Chances are they’re having a bad day. Chances are they’re feeling fear or pain or rejection or heartache. Chances are they’re drowning. Be their lifeline.

If you want to hear more about my friend’s daughter and their fight:

http://www.gofundme.com/abbygracecure

18 Comments

    1. Thank you so much Diana. I miss getting over to the Monster lately. I’ve been woefully behind on my reading. But I did read the post by Cat-Blog and it was so powerful. I got distracted before commenting. I hate when I do that..

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      1. I’ve been really remiss, too. It’s taken me this long to catch up on comments and things. Hopefully things will slow back down for everyone again soon—and at least we’re managing time for writing!

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  1. I feel a lump in my throat and tears building up reading this. Thank you so much Gretchen for the support and encouragement you have given me. I can’t even begin to tell you how much it means to me.

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    1. I did know who it was… and I hope you know I’m here for you always. In fact, I’m going to send you an email real soon. I just have to nail down a few things but I *should* have something really cool lined up to do in November. And I think/hope it could bring in some decent money. I’ll wait til I have a definite so I can avoid another rambling email… (and thank you for your sweet words)

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  2. Gretchen,
    You have such a unique way with words and writing. You are able to take the reader on a journey through your stories. Although it will never compare to the devestation you experienced firsthand, as a reader I felt like I was right there beside you in that room. You are a valuable talented writer! Thank you for including me and sharing your insight for perspecitve in this rollercoaster life. Xo r

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    1. Thank you sweet friend! You’re one of those people who’s always putting so much positivity and light out there and I’ve always admired that. I’m honored that you would read my blog… thank you 🙂

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  3. Gretchen this post seems almost prophetic. The weight of my woes is often unfathomable. Yet I am often reminded that it can be so much harder. And for many I love, it is. So even in my depths, my life under water, I learn to use my gills and breath in a new way. I also don’t do drama. I think it is those of us that truly understand hardship that can make this adjustment in life. You don’t know how needed a reminder this post was for me today. Thank you, Dana

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