Circling Back to Hope

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

It’s one thing to read “Becoming” by Michelle Obama or “Bossypants” by Tina Fey. We’re naturally interested in learning more about these people. But what about those of us who aren’t national figures?

For those of us non-public figures, we especially need to draw upon universal emotions when we’re unraveling our story. One of the universally-shared emotions that comes up again and again in my book is fear. Another emotion is hope. When there was so much to despair, it may seem counterintuitive that we chose to carve out hope.

But, in doing so, we found our special ingredient, the elixir that helped me beat the odds.

It would have been helpful had Dr. Snow offered us some hope, but my small army, which included my parents and brother, was strong.

__________  

The excerpt below is from “Another Dr. Snow Visit.”

It’s been a week since my appointment with Dr. Garcia, and my mom can’t wait to share the new tentative diagnosis with Dr. Snow. When Dr. Snow walks into the exam room, my mom’s enthusiasm bubbles over. “You’ll never believe what we found out from the doctor in Wisconsin!” 

Dr. Snow cocks his head to the side. 

My mom continues, “Dr. Garcia thinks that Megan was toxically poisoned from the platinum in her braces!”  

Dr. Snow’s expression doesn’t change one bit, but my mom doesn’t pick up on this. C’mon, mom, I think, you knew that he wouldn’t buy into this, didn’t you?

But she persists. “What do you think?” she asks. “Do you think that’s possible? I do. I really do.”

My mom is usually a pretty perceptive person. Not this time.  

Dr. Snow presses his hands together and places them below his chin. “Nancy,” he says, “it’s not unusual for parents of children with terminal diseases to seek alternative explanations.”  

I knew — I knew — that Dr. Snow wouldn’t put any faith in Dr. Garcia’s alternative diagnosis, but this reply? Really? Even I wasn’t expecting this much of a cold-hearted response. I look at him out of the corner of my eye and, when my eye catches his hairline, I pray a quick prayer that he bald prematurely, that he loses all of his hair overnight.

I’m so upset. With Dr. Snow. With my condition. I don’t want to believe a single word that comes out of those thin lips of his, yet I also remind myself that he’s the expert. He wants us to be “realistic.” And yet, I think. Why not offer some hope? Just a tiny shred? Even if you don’t believe it 100 percent.

After we’ve sat in stunned silence for ten seconds, my dad’s anger simmers and he shouts, “You’ve got to be kidding me!” 

This surprises me. Not that I haven’t seen my dad get angry before. It’s just that, up until this minute, he was the one who was the least interested in trying any of that voodoo homeopathic stuff.

“You…you don’t get it,” my dad says as he slices his right hand through the air. “You really don’t get it, do you?”  

I like that my dad is putting Dr. Snow in his place, but it also makes me nervous.

As my parents and Dr. Snow talk in fragmented phrases, I start pulling off long, loose strings from my white-washed jeans. I really hate confrontation. I hate it.

I’m so relieved when my appointment comes to a close and Dr. Snow finally leaves the room.

“I’ve got to get back to work,” my dad says. He gives me a quick kiss on the cheek before telling my mom that he’ll call her before he heads home.

My mom waits by my side while I get my socks and shoes on. Because of all the therapy I’ve had, I now can do this in three minutes versus six. When I finish, she takes my hand in hers and tilts my chin up so I’m forced to look into her eyes. “Meg,” she says. “I want to tell you something. No one knows you better than I do. And I want you to know that you’re going to get better.”

I nod. We’re in Dr. Garcia’s camp now.

__________  

I brought my son Jack to see the neurologist Dr. J the other day because he’s been experiencing headaches averaging twice a week since June. I didn’t write down my own neurological history on the intake form since it takes up more than two centimeters, the space allotted on the sheet.

When Jack and I walked into the neurologist’s clinic, I knew that I was not walking down the same path with him that my parents did with me. And yet, as I watched Jack doing the same neurological exam that I did when I was younger, I was transported back in time and my heart skipped a beat. Breathe, Megan, breathe, I reminded myself.

I did end up sharing a brief description of my medical history with Dr. J midway through the exam. I thought I would be remiss not to do so, even though I knew headaches were not a presenting symptom for Hallervorden-Spatz.

“Well, that diagnosis clearly was wrong,” Dr. J said, as he turned to look at me.

I smiled, and said, “The M.D./homeopath I saw used electroacupuncture and came up with an alternative diagnosis of platinum poisoning. He then gave me platinum homeopathic reagents, and, within a couple of months, the ‘junk’ that was in my white blood cells started to clear, a result that we were told would never happen.”

I wasn’t sure what to expect in response. I know this explanation is “out there.”

I appreciate how Dr. J wasn’t dismissive. That said, he offered an alternative suggestion based on his medical expertise. “I wonder if you suffered from autoimmune encephalitis,” he said.

I made note of this with interest, knowing that there are possibilities for why I healed beyond what I currently know, even if the timing of when I got sick and started to get better coincided with when I got my braces on and when I started the homeopathic treatment, respectively.

Back to Jack. Not surprisingly, he “passed” all of the neurological tests. He most likely has a headache syndrome. I now have tools in my toolkit for how to help him overcome this syndrome. Thank goodness.

If I ever have to bring my kids to see a neurologist again, I will bring them to Dr. J. His bedside manner was superior. He even joked around with Jack! I don’t remember ever laughing when I saw Dr. Snow. I recognize some of this was because we were dealing with matters of life and death. However, some of this comes down to personality as well. Dr. J came across as both a professional and a compassionate human.

My interaction with Dr. J made me think that he would have given the younger version of me a reason to hope, or perhaps even a reason to laugh.