Hiking the Appalachian Trail

Sometimes mom has my back, and that was definitely true starting in March 2020. Many times since then mom and I spent hours hiking, getting closer to my goal of hiking the whole Appalachian Trail. Mom mapped out hikes for us and dad would drop us off and pick us up. We kept at it after going halfway through Pennsylvania, then all the way through Pennsylvania, then through New Jersey, then New York, then Maryland and West Virginia! All told, we hiked 500 miles in 2020, from the NY/CT border to Skyline Drive in Shenandoah National Park.

We kept going in 2021. I’m nearly done with Connecticut now and will be over halfway through Virginia and into Massachusetts by the end of the summer.

How many people do that?!

AThike

Map of my hikes so far

Ages ago I would never have thought I could do something like that. I’m not really athletic and hate most sports. It’s taken me a long time to learn soccer and I even used to go to physical therapy all the time. You would think a long time ago that this would have been majorly too hard for me. But it wasn’t. I’m even strong enough to go over 20 miles in a day. (My longest hike was 20.2 miles.)

More than anything selling in a store, the Appalachian Trail is the best present there is. I’m a huge fan of the way it lets you be surrounded by nature whether you’re in a crowded area or not. And thanks to thousands of volunteers, it’s all marked with white blazes so that I can lead the way without worrying about a map. Best of all are the mile markers and signs helping you celebrate your progress!

I love hiking for many reasons! It makes me calm to do that for hours, and mom is with me, which is amazing. I’m so proud of how long I can hike and how good I’ve gotten at doing it. All of my confidence comes from being so good at it. I’m planning to hike as much as I can this summer!

Many times mom made mistakes. We hiked north one time that we meant to go south. We sometimes had more miles to our destination than we thought. We got surprised by big climbs. And we were not ready for crazy water crossings. Sometimes we got freaked out by animals, like snakes or a bear someone saw nearby.

The water crossing near Rausch Gap (Pennsylvania)

But no time was ever bad. And the mistakes were even part of the fun! Sometimes they were even the best part. And I’m more forgiving when we’re hiking because it’s my favorite thing. I’m all convinced that this has helped me be more forgiving off the trail, too. Another great thing to thank the Appalachian Trail for!

More than anything else, I love how much time it lets me spend with mom. We’ll be hiking for 8 or 10 hours a day just the two of us. We mostly are quiet but sometimes sing or talk. She always points out animals and mud and cool views, which she loves, and always makes me stop to look. Mainly I don’t mind but I’d often prefer to keep going.

Bear Mountain (New York)

My trail name is Calypso. I picked that because it was the name of my elementary school and Jacques Cousteau’s research boat. I love oceanography and exploring and I love my school and Mrs. G, so it seemed like the perfect choice.

Hope to see you on the trail!

Oliver Sacks is My Writing Hero

Oliver Sacks’ Seeing Voices is a remarkable book about deaf culture, and my own reaction is one of major gratitude. The book was written in 1989 when students at Gallaudet University protested about the appointment of a hearing president. The students made many demands, including that sign language be used in classrooms and not just in dormitories. I’m mostly amazed that they managed to have their voices heard even though they had no voices. I’m moved by the sentiment that says that deaf people aren’t disabled, but instead have a majorly privileged mentality to share with the world. I’m inspired to think about how I might make a similar statement about my own disability with speaking.

Join My Campaign

meningitis campaign

I’m starting a campaign to raise awareness about meningitis. I’m managing to recruit many other children who have meningitis stories too. I’m looking for volunteers who had either viral or bacterial meningitis to join me in the project. My plan is to work with you to design various multimedia messages that spread important advice: to get vaccinated and to get treatment fast. If you join me you will get to help create the beneficial messages and to help spread them too. I’m hoping to get many volunteers to join me in making a difference in fighting this disease. You can email me at jacepooley@icloud.com if you want to participate. Many thanks.

Hiking!

jace-and-mom-hiking

I’ve been making great progress on the Appalachian Trail! So far we’ve gone 23.5 miles. Maybe we’ll be in Georgia doing this sometime before the corona virus is over! I think everyone should have something like this to cope with life now. I would go totally crazy without it! You should maybe post a picture for America to see. Here’s one of me! Tell me about it, too!

Meningitis Messaging

meningitis-medical

Meningitis is not going to stop me! I’m going to have to have a lot of patience with how long it will take to get my voice heard since many meningitis managers have not responded to my emails, and I’m getting discouraged. Maybe I can make my own meningitis messages that reflect my experience with the meningitis mentality and mannerisms. I’m hoping Mommy and Daddy will help me make meningitis messages, and that Mommy will make an effort to mentally shift her attitude about my meningitis messaging. Maybe I can write a campaign to raise awareness about meningitis featuring other children with meningitis who won’t be able to say their stories because of their injuries. I want to meaningfully make a message that will make many people manage to change their views about meningitis. Thanks for reading!

I’m Relaunching My Blog

Anton Weichselbaum, who identified meningitis in 1887

Anton Weichselbaum, who identified meningitis in 1887

I’m relaunching my blog as Meningitis and My Brain to indicate that I am now refocused on fighting meningitis, which was responsible for my brian damage when I was one month old. I’m majorly interested in the disease, including its history. I will be posting about my effort to make a difference in meaningfully stopping its spread and impact on people’s lives. I want to make connections with other people who have suffered from meningitis in their lives, and make a contribution to managing to make meningitis rare. I would love your help as I embark on this new mission.

A letter to my middle school classmates

jace in maine

Here’s looking forward to understanding from my new classmates.

***

Many things are racing through my head. My bet is that I’ll love middle school and it will open many doors for me. I’m excited to join some clubs and enjoy again how it feels to be whoever you want to be without people expecting you to be a certain way. I can’t wait to start fresh!

How many times have you wanted to say something but been nervous and stayed quiet? Say you have an idea but just can’t think of how to describe it. How do you feel? Maybe another person doesn’t manage to understand how you talk. You probably feel bad, right?

Remember that when you’re around me. I feel those things all the time. Mainly I ask that you have patience and give me time to write. I am so much better at communicating that way. You give me that chance and you’ll see how nice and smart I am. Maybe make me your friend and you may manage to get used to these things about me. After a while, you won’t notice how I communicate.

Mainly I ask that you don’t make me talk about many things but do some talking to me. Tell me about yourself and what you like and anything interesting.

Please don’t treat me like a baby. It will make me all mad if you do. I’m super smart and can easily understand what you say. How about you just pretend I can talk and treat me the same as everyone else? I’m really a nice guy

My Memory and Me

Jace Pi Day

My memory is miraculous. I can remember being born and getting meningitis when I was one month old. Maybe you think this is a miraculous memory, but it is very debilitating. My memory is a burden on me for making progress. I can’t forget my past and I meaningfully need to forget. My memory has prevented me from making meaningful changes to my mentality. Meaning I need to leave behind my mentality. Memory has an anchoring effect. My memory is a gift and a curse. I hope to learn to forget the hard times I have had so I can be an optimist about my future again!

Feeling Better about Middle School

Nitschmann Middle School
I’m mostly feeling better about middle school. Mom and I got to ask Keller about her schedule and how things work. Homework time with Mrs. G is going to be awesome and will be what motivates me to get many things done. We’re going to have our own workspace I’m thinking in the library to study. No more gym which I’m awful at and no language which requires lots of talking. And I’m going to love music class. You made it, mom, how I wanted. You’re amazing. And I’m amazing too for making the plan all detailed.