Tag: fears

Pretending Life

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“We spend a lot of our days pretending,” he wrote to me, in response to my questions regarding his daughter’s unrecoverable traumatic brain injury.
“You know how that is.”

He didn’t know me, but he knew me. Better than I knew me.

I felt my sharp intake of breath, as though my mask had been ripped off, and I watched, frozen, as my well-built facade cracked and then crumbled into pieces on the floor around me, until I was totally exposed, totally vulnerable to the one person I’ve pretended to the most for the past five years. The most important person from whom I’ve hidden every emotion, every lost hope, every broken dream, every frustration, and every heartache.

Me.

“Yes, you know how that is, don’t you?” I asked myself not without anger. I tried to be honest with myself for a split second, before I began to quickly rebuild that facade, brick by brick.

I spend much of my days pretending that caring for someone 24 hours a day is normal. That my son will find his abilities just around the corner. That all is always well. That others actually care and it’s just today they are not showing up, physically or emotionally; surely they will be here tomorrow.

I pretend that I am not exhausted. That my daddy did not die. That my mom is well.
I pretend that I am happy and present.

I pretend that each punch from the universe just makes me stronger and each knife in my heart makes me care more.

I pretend that as we are on our way out the door, on time, an “oops, Mom, I need a change” is just part of everyone’s normal day with their typical 22-year-old, requiring a complete change of clothes, after a transfer back to bed from wheelchair, to remove shoes and braces and all clothes and then having to reverse the entire procedure until he is back on his wheelchair, ready again to leave, now 20 minutes late for that appointment.

I pretend that your “God only gives us what we can handle” or “God has a plan” doesn’t  make me want to shake you and scream uncontrollably.

I pretend those little pills I take to help me sleep at night actually do help me relax and that I bounce out of bed at 6:15 am, eager and happy to face the world, on yet another groundhog day.

And no, your oils and aromatherapy and herbs will not help me with this “stress”. I pretend to be sweet when I say no, thanks.

I pretend that you do not judge me or my daughters, because I pretend you know better, are able to comprehend what we have all endured, or endure,  even without trying on our shoes, let alone taking a few steps in them.

I smile. I laugh. I have a sense of humor that allows me to poke fun at me. I also have a vault inside my head where I store all the grief and pain and a massive cover-up as to my reality.

“Who are you most afraid of?” I was asked the other day over a delicious Starbucks latte, decaf with nonfat milk…a hint of vanilla, pretending to fit into this chic setting, as I broke down explaining my pretense, my sadness, my fear of being “found out”.

“Me,” I replied, not even shocking myself at my answer. “I’m most afraid of becoming vulnerable to me. I’m afraid of the vault exploding with that last weight I try to shove inside and then what will become of me or Damon or the girls? Who will hold up our fort?”

Maybe you need professional help.

Maybe I do. But I’m terrified to face the contents of that vault. Terrified of the realities. The what-ifs the what-if-it-nevers.

In the first few days when they told me my son would die, or be in nothing more than a vegetative state in the best case scenario, I refused to look over that edge into their darkness, not because I was strong, but because I knew I was too weak to face their reality. So I pretended they were wrong. I pretended he’d get well again. I pretended I knew best.

I still pretend to be strong.  I pretend a cure is right around the corner. I pretend that your actions or words or a dire prognosis doesn’t hurt me.  I pretend that all of our lives are absolutely fine, and the aftershocks that just don’t stop, don’t exist.

It’s just easier to pretend, isn’t it?  As long as the vault stays sealed.

“You know how it is.”

The Burden of Fear

Why are your braces on the outside of your pants, I asked him when he drove himself into the garage onto the wheelchair lift. Why aren’t they underneath?

That’s how he put them on, he told me. He put them on over my pants.

Oh. Do you like them like that? Are they more comfortable?

No. Not at all. I prefer them the other way.

Why didn’t you say something? Why didn’t you tell him?

Because I can’t move. And I need him to take care of me. And I don’t want to get him mad.

I felt punched in the gut. Stabbed in the heart. All the clichés swooped down on me at once. I knelt on the floor next to him and said, You’re the boss. We are here for you, to make you comfortable. It’s your body. It’s your life. You need to tell us if something is wrong. You are in control of your body.

Even if I can’t move, he asked me? Even when I depend on everyone else?

Especially because you can’t move. We are your arms and your legs, but you are the brain, what controls our actions. Unless it is bad for your health, we will do whatever you ask. You cannot be afraid to ask.

Are you afraid to ask me, too? I asked him. Are you afraid to tell me to do something a different way or not at all? No he answered. Never.

But I wonder. I wonder if that’s true. He depends on me more than anyone. He depends on me for his every basic need. I know he’s not hesitant to ask for something, even two or three things at once, but I wonder if he’s nervous to ask me to not do something or to change the way I do something.

I saw him slightly wince yesterday, while I was getting him dressed. After I was finished, he said to me, you hurt me a little before, getting on my pants. Why didn’t you tell me? I asked him. Right there and then, why didn’t you tell me so I could know exactly what I did wrong and never do it again? It’s ok, he said. It doesn’t hurt much now. I didn’t want to make you feel bad, he said.

He didn’t want to make me feel bad for hurting him.

I felt that familiar anger bubbling to the surface. Followed by hate. For the circumstances that got him here. For the current situation. For the people along the way who made him feel as though he may be a burden.

For the overnight aide who complained that she had to get off her ass and off her phone and walk into his room each time he called because he couldn’t get comfortable himself, because he needed her to adjust his pillows or fix his legs or rub his ankles.

This had better be the last time you call me, she said to him that night. I’m done coming in here. I will call your mother down and she’ll be very angry.

She’s right. I would have been furious. But not with him. Never with him. When he told me the next day what happened, I made sure she didn’t come back again. It’s your job, I said to her. It’s why you’re here overnight, getting paid. If he calls you 50 times an hour you need to tend to him 50 times an hour. How is he going to get comfortable by himself with only one arm that works? He depends on you.

He can’t toss and turn. He can’t adjust his head pillow. He can’t do the things everyone else does in order to find that place, that comfortable place where sleep eventually comes. He can’t go to the bathroom without calling someone. He can’t pick up something that falls. He can’t survive without help.

What can it be like not to be able to move? Not to be able to do anything independently? To lie in the dark at night hoping someone is at the other end of the monitor, awake, in case he needs to pee, to move, to vomit, to scratch an itch, to turn over. Sometimes I think he calls excessively at night while heading off to slumber just to make sure someone is there. To make sure they hear him. Because he’s scared. He’s scared no one will answer.

Behind that smile, that good nature, that humor, are real fears of being alone. Of being a burden. Of being afraid to upset the caregivers lest the caregivers stop caring. Even the caregivers that he knows love him unconditionally and forever.