Hope

This is an archived post that was originally published at beyond-terminal.com

As you can guess from my previous post, Dr. Pierce shared his outlook on my prospects with my parents, and he did not paint a pretty picture. In his expert opinion, there was no hope of my ever recovering. There was no hope of my ever approximating anything close to “normal.” There literally was no hope. From his perspective.

Thirty-five years have passed since this news was conveyed to my parents. I’m still here, and I’m doing pretty good. That said, my recovery was long, and it was scary to look at my illness with an unflinching eye, even when I was doing better. For a long time, I thought it was best to keep the past in the past. Besides, when would I ever find time to write about my illness? The unspooling of my story coincided with my son’s naps (when I could keep my eyes open). It took a long time to comb through my medical records and absorb all the details — and longer yet to figure out how to write all of this in the form of a narrative. But, ten years later, I now have an 11-year-old son and 8-year-old daughter and a 90,000-plus-words manuscript in my hands.

I sat on this manuscript for months, not doing anything with it. I had allowed myself to be vulnerable enough to see what had really happened. Wasn’t this sufficient? I questioned if I had the courage to share my story with friends, family, and strangers.

What changed? I continue to be inspired by other people who share their stories. I had the privilege of talking to Laura Sobiech recently. She wrote “Clouds,” a book based on her son Zach’s life with osteosarcoma. Zach created a beautiful world around him through the sharing of his story and his songwriting. Even through death, Zach inspires people. Talk about powerful.

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The excerpt below is from Chapter 12: Dr. Pierce’s Piercing Advice.

When my mom thinks I’m sleeping in the family room, I creep closer to the kitchen to hear what she shares with her friend while talking on the phone. I learn that Dr. Pierce recommended that my mom and dad join a parent-support group for children with brain damage. I find out that Dr. Pierce said that I’d never be “normal” again and that my parents need to work on accepting this. I also hear my mom say that Dr. Pierce compared my brain to Jim Brady’s. It looks that riddled, that damaged. It takes a couple more phone conversations for me to piece together that Jim Brady was an assistant to Ronald Reagan and that he was shot in the head by an assassin trying to kill the President.

My brain looks so damaged that it looks like I’ve been shot in the head? I bite down on my lip and wonder how this could even be possible. It doesn’t make any sense. If I don’t get control of my thoughts, worry might gnaw away at what little is left of my brain. I need to think about something else, something happier. I scan the family room, and my eyes fall on a coffee table book with a white cover. White walls, white floors, White Coats. I have come to hate the color white. Who does Dr. Pierce, this new White Coat in my life, think he is? I’ve met him one time, for all of 30 minutes, and this White Coat thinks he can tell me what my future looks like? That I’ll never be “normal”? I shake my head at him, even though he’s 450 miles away. How dare you.

The competing voice in my head says, He’s the doctor. He’s seen your scans, your scans that look like bullet fragments were generously sprinkled throughout your brain. What are you going to do about that? How are you going to overcome that?

I redirect my gaze up at the ceiling. I’ve got to get out of my head. As I stare at the ceiling — gosh, I wish it were a different color than white – I find myself smiling. Voluntarily? Involuntarily? I’m not sure, but it’s like my face is forced to smile when I stare up at the ceiling, and when this happens, my brain redirects itself. I decide I’m going to celebrate the small stuff. Every small step that moves me in the right direction. Guess what I’m going to do, Mr. White Coat in Canada? I’m going to work on recovering every single thing I’ve lost. I’m going to celebrate when I’ve shaved off seconds while tying my shoes. I’m going to celebrate when I’ve shaved off seconds while writing my name. You know what? I’m even going to celebrate when I button those stupid buttons on that shirt that I like that I haven’t worn in forever because the buttons are so stubborn. So there.

It’s not too long after our visit to Canada that I find out that I now weigh 70 pounds. Did you catch that Mr. White Coat? Seventy pounds! This body of mine is learning how to work again. What’s to say that I can’t convince my brain to work again, too?

My happiness is short-lived though, because fall rolls around and it’s time to get back on that same yellow bus. The one with Groves Academy stamped on the side. Gross. My attitude of, “you take this, you Mr. White Coat,” is suddenly ratcheted down several notches.

At least I know what I’m getting into, I tell myself. Also, it helps that I’m not quite as rigid about my routine as I was a couple of months ago. I’m comfortable taking more risks. Sometimes I challenge myself to get my jeans on before my shirt, just to test things. When more bad news doesn’t come my way, I feel a tiny bit more comfortable loosening some of my other rules. Maybe I can alternate bites of meat and potato instead of eating all the meat first? Maybe I can experiment with getting out of bed at different times?

All right, Dr. Pierce, I may not like you, but that medicine you gave me might actually be helping I admit with a grudge.

There are things that I’m still guarded about though. In the classroom, I won’t speak unless spoken to, and I’ll say the absolute bare minimum that’s necessary. Why draw any more attention to myself?

However, when Ann, a new student at the school, starts sitting next to me in the lunchroom, I find myself actually wanting to talk and make a connection for the first time in over two years. I’ve worked so hard at convincing myself that I’m okay and that I don’t need friends that I’m surprised I’m putting myself out there.

I’ve got a fine line to walk though. I want to be normal, or at least pretend. As far as I’m concerned, no one’s finding out what I’ve been up to these last two years. No one’s going to know my story. I may not remember exactly how to go about making friends, but I know one thing for sure: You make friends with people who have things in common with you. So, what do I have in common with anyone else my age?

Ann and I talk about hair, clothes, and movies. It turns out that my hair hasn’t been a big priority of mine these last couple of years, but I decide that I’m going to change that. I admire Ann’s shoulder-length, wavy hair and her big, fluffy bangs that are held together with lots of aerosol hairspray. I got a perm this summer, but I still haven’t figured out how to wear my bangs in the current style.  

When Ann invites me over to her house after school on a Friday, she teaches me how to use a curling iron and backcomb my hair so I can wear my bangs just like hers. We then watch “Dirty Dancing.” She’s seen this movie countless times and can’t believe I haven’t seen it yet.

Later that night when I’m in bed trying to fall asleep, I replay the afternoon. I can’t believe that I have a friend. I have a friend! And I even went over to her house and watched a movie that has the word “dirty” in it. This is progress. Do you hear that Mr. White Coat? Progress.

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I have a friend who is a pulmonary and critical care physician. He sees people in the ICU, and many of these patients die, especially now with our new COVID reality.

I’ve asked him countless questions about how he communicates information to his patients’ families. How much of what’s in your head do you communicate? Everything, or is this done on a need-to-know basis? When do you communicate this? Before palliative care has started or once it has commenced? Who do you communicate this to? Everyone present in the waiting room, or just the healthcare power of attorney?

My friend’s answers to most of these questions is, “It depends.” Things can turn quickly, either for the better or the worse.

One of the things that he did say with more certainty though is that you want to be honest in what you choose to convey and still remain hopeful. There’s healing power in hope. Zach’s story makes this abundantly clear.

Because of this, I’m left wondering to this day why Mr. White Coat in Canada felt a need to tell my parents that I would never, ever get better. Thankfully, my parents and I never gave up hope.

*Wishing you love, hope, and joy this holiday season! I’ll plan on posting next on January 3, 2022.