Fear versus Despair

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

In this excerpt, you will learn that Dr. Snow recants his diagnosis of Hallervorden-Spatz Disease based on the results of my blood test. All of us were euphoric! Yet, after the excitement of this news wears off, we recognized that I still had a long way to go toward recovery.

A big challenge for me is that I was still living in fear even if death was no longer imminent. To compound this challenge, I was determined to live as normal a life as possible, which meant placing myself in situations that made me continue to feel fearful. While I clearly was in no way prepared for “regular” school, this was what I was set out to do, and no one was going to get in my way of doing so.

This approach to living helped me make strides, yet it also came at a cost, which will be revealed in future posts.

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The excerpt below is from “Toxic Insult.”

Winter changes to spring, and I take the remedies Dr. Garcia prescribed. I do this morning, afternoon, and night, without fail. The remedies initially don’t make me feel that much different — not worse, not better. Dr. Garcia has told us that homeopathy is a slow process and that I may very well need several rounds of remedies before I start to notice a difference.  

Dr. Snow has also started me on vitamin K, with the thought that this can help with the detoxification process. I’m confused why he has suggested I start taking this when it’s clear that he thinks what I have is incurable. Weird. There are certain things I just can’t make sense of.

I’ve been sick for three years now, and while I hate waiting around to see if this new regimen will make a difference, I’m willing to be relatively patient because nothing else has helped. Well, nothing other than therapy. But those gains have been so hard to come by.

What I’m much less patient about is continuing at Groves. As much as I like my friend Ann, I’m ready to leave this place. How am I going to get better if I don’t constantly push myself and face new challenges? I’ve told my parents that I need to go to North Junior High, the same junior high that all the neighborhood kids go to, starting in the fall. I just have to. They tell me that they’ll look into this.

With this promise lingering in the air, I feel that much lighter, even though today’s a Tuesday, another Dr. Snow day. Like usual, my mom picks me up early from school for my weekly appointment, and we meet up with my dad at The Hospital.

Dr. Snow is generally efficient and short on pleasantries, but today he sits down on his stool and pauses before giving me my normal neurological exam. I look at him, trying to decide if he’s going to surprise us with something new today. He’s leaning forward, with his hands loosely clasped together. This is different from his arms-crossed, pinched-face look.

“Do you have good news to share with us today?” my mom asks as she tucks her shoulder-length hair behind her ears. Apparently, I’m not the only one who notices the changes in his body language.

“I do.” Dr. Snow smiles. A big enough smile so that I can really see his teeth. How have I not noticed how white and straight his teeth are before now? Does he smile that infrequently? “You know that a lot of Megan’s diagnosis has been based on the results from her brain scans and blood tests,” he says. “Well, the blood test that just came back yesterday shows that Megan’s lysosomal inclusions and circulating lymphocytes have decreased significantly.”

“This is such good news!” My mom jumps out of her chair. “This is what I’ve prayed for!” She’s done her research, and she knows that there’s no way that my lysosomal inclusions would decrease if Dr. Snow’s diagnosis was correct.

“Wait.” My dad leans forward in his chair too. “Are you saying that she might not have Hallervorden-Spatz after all?”

“John, this is the news that we’ve been waiting for!” My mom walks over to the exam table and gives me a hug. “Meg, I can’t believe my prayers have come true!” Tears flow down her face. She doesn’t bother to blot at the mascara that streaks her cheeks.

“Dr. Snow?” my dad says.

“I’m cautious,” Dr. Snow says. “But this is something you wouldn’t see with a classic case of Hallervorden-Spatz.”

My dad joins my mom and me, and the three of us thread ourselves together. My parents are clearly ecstatic about this news. I should be happy too. I think I will be. Soon. Right now though I feel more surprised than anything else. In his roundabout way, has Dr. Snow just said that I don’t have this dreaded disease? I think that’s what he’s saying.  

“Meg, this is wonderful news!” my mom says as she looks me directly in the eyes before hugging me again.

I keep waiting for a “but” to follow, for something else to be said. And yet the room is quiet. Could it be? Could it really be? The disease that I’ve thought I very well had for over two years could now be placed on a shelf, never to be picked up again?

“So,” my mom begins, pivoting to face Dr. Snow again. “So…Megan has been taking the remedies from Dr. Garcia for about three months now. Do you think these remedies are helping to remove the toxins from her body?” 

Dr. Snow pauses and rubs his hand against the one-day stubble on his chin. “It’s hard to say. But it’s looking more and more like Megan suffered from an extreme toxic insult.”

My parents nod at his response. They don’t look for more than this from him, this man who at one point had been giddy about my diagnosis and excited to study me.

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The following is an excerpt from Amanda Gorman’s essay, “Why I Almost Didn’t Read My Poem at the Inauguration,” that was published in the New York Times on January 20, 2022.

I’m a firm believer that often terror is trying to tell us of a force far greater than despair. In this way, I look at fear not as cowardice but as a call forward, a summons to fight for what we hold dear. And now more than ever, we have every right to be affected, afflicted, affronted. If you’re alive, you’re afraid. If you’re not afraid, then you’re not paying attention. The only thing we have to fear is having no fear itself — having no feeling on behalf of whom and what we’ve lost, whom and what we love (Gorman).

I appreciate the reminder that we all have fear and that, as Gorman points out, fear is far better than despair or despondency.

Had Gorman let despair take over, she wouldn’t have ended up speaking at the inauguration.

Had my parents and I let despair take over, we would have given up, I would have died, and an autopsy most likely would have confirmed that I died of Hallervorden-Spatz Disease. After all, there was metal scattered all over my fragile nervous system.

As a 47-year-old, I look back at all those years that were dedicated to rehabilitation and getting back to the “pre-sick Megan” that were still on the horizon after this auspicious appointment.

Again, thank goodness I chose fear over despair – and that this route led to glimpses of hope.

Yet I wish I would have known then what I know now. If you live your life in constant fear of not measuring up, of not being enough, it takes a toll and intermixes with your DNA to the point where you don’t know of any other way to operate. You lose track of the “off” switch, even when fear is no longer serving a purpose.

In my search to find who I would have been had I not got sick, I lost sight of many important things. I ignored my body when it was telling me that it had been pushed too far. I paid little attention to nutrition, sleep, and exercise. I avoided being vulnerable in friendships and relationships.

Ironically, now that I’m finally no longer chasing after that version of me, the things I value the most are the things I pushed aside in my quest to be the person I thought I should be.