Making My Life My Own

by Pablo Hernández 

    Some may believe that my life must have the good things that they want—good things that they believe all people want. Have to remind them that those things are calling to them, but sometimes don’t call to me. Caring people can happily tell me that I should have a job to feel good about myself. Good feelings have to come from inside me. 

    The most appropriate job for me is to write. Other people get a job in a store or a restaurant but those would be impossible for my challenging type of body. That seems like I am picky, but this kind of learning, learning to make my body have some discipline is like asking me to climb the highest mountain every day. 

    Writing make the true life I want so much. I don’t know if I can make money writing, but it is my best vision for the life I want to live.

Straight as an Arrow by Aulton Grubbs, 10th grade

 

Finally, it’s the moment I have been fearing for what seems like countless months. I hear them call “Aulton Grubbs”. Though I’m grateful to hear my name, a shiver still runs down my terribly curved spine. It is time to get in my gown and get my IV so Dr. White can cut open my back. 

Mom and Dad help me get ready physically. The emotions are mine to deal with. Mom says, “It will be OK.” Dad says, “My man, it’s gonna work out.” He is less worried than Mom. I am more terrified than either of them. 

One of the mean, cold, cheerless nurses walks into the bland, sterile hospital room. She comes over to check my IV, and asks Mom to explain the procedure in her own words. Mom says, teary-eyed, “Dr. White has to make an incision down his back. He will move the muscle to access the spine. The doctors will screw a straight rod to his vertebrae to make my baby’s back straight again.” I groan inwardly. I’m almost 14–the only baby in the room is her.

The doctors come in, holding the syringes of the medicine that will put me to sleep. “It’s go-time. Don’t cry,” I think. Mom and Dad kiss me and tell me they will see me after the surgery. The medicine works fast. It makes really hazy images. I hear hints of voices and see visions of loving angels helping me stay coherent. My anxiety runs so swiftly, like melted snow into a fast moving stream. I cannot cool down to make the melting stop. Then, everything is black. I am taken into the operating room. My problematic body requires a team of surgeons, because my entire spine is twisted. The special doctors guide my vertebrae into a straight rod. It is screwed in place like jungle gyms are screwed together to hold children’s lives in bold, new play. My spine is going to support my life in a new way. 

The jutting feeling of having the vent removed is one of my first memories after the surgery. The noise of the vent is more terrible than the throat fire, when I notice it breathing for me. The pain is easier to endure than the depressing in…and….out, in…and…out, in…and…out sighs of the machine. Next, I see Mom. Concern floods her face. I look in her eyes and find my calm. I am in pain and I can’t move. My arms are strapped down because I try to pull the vent out of my body. I look around and find Dad. He finally looks at me. He’s been staring at the ground–I imagine to stave off tears. I look at my body. There are gobs of things attached to me. I have no idea how so many things are necessary, but I understand later. The pulse oximeter gives readings on my oxygen levels. It is like a vice on my sensitive index finger. I can always feel it so tight, like it will make my finger fall off.  There is the throbbing, perpetual squeezing of the blood pressure sleeve. Initially, I have four IVs. One is a central line, these are tools used only for the critically ill. They feed into very large veins. And, God, I hate that tube that drains all the blood from the deep, bloody ravine in my back. The blood pools in a bag connected to the tube.  There are too many devices, people and noises. I wish the pain was over already, but I still have a lot of work to do.

Over the next few days, I work on sitting and walking short distances. The pain is unrelenting. I start to struggle with breathing. Mom and Dad hold an oxygen mask over my mouth when my pulse goes hammering away or machines beep, sounding like “hazard, hazard.” They scream in my head, “you are in danger, you are not okay.”

My first treatment with the respiratory therapist is kind of no help. Eager to heal my hurting lungs, I consent to have suction that feels like intense fire licking down my throat. I badly want it to help. The night treatments are less painful because I am drowsy. Many treatments do nothing to stop the inevitable. 

Hours of labored respirations take my life. Wounds stop while I lie there in the hospital where I need many nurses and doctors to revive me. When I start breathing, the light fades. I feel that intense glow described by those who have reported on near-death experiences. It is a light brighter than the sun, releasing me from all pain. I always feel my body is a gift, but I want to see what a back without pain feels like. I have a will to live. 

To my surprise, when I open my eyes, none of the faces belong to my mom. I am struggling and I need her. I gulp for the air that doesn’t flow like I need. Hundreds of minutes pass, it seems, before Mom comes into the room. She is a gorgeous, beautiful sight for me. I know Mom reads the situation and she puts nurses in high regard until they hurt me. 

I lobby Mom to yell at the new nurse back in the ICU. I am pinned down by doctors and pain. I had ripped out one of my IVs because I wanted to go home. The other two died, just as I had. I believe the IVs ran their course with the small veins. They gave me fluid and morphine. That kind of stress on the vein is not sustainable in the long run. I sense I need a good, skilled nurse who loves me enough to get the needle in with one jab. It takes this one four tries. Mom tells her, “Stop and go get someone who knows what in the hell they are doing.” I feel like falling off the cliff again. Yet, I hold on. I get more medicine in my perfectly placed IV and it is a long, terrible night. 

Home seems very far away. I made a goal to make the hospital stay end after five days. Stealing away, in my mind, I take so much strength with prayer and my mind reveals I will need to hold on. 

I rededicate myself to healing my lungs. I can just lay in bed or I can work, and I choose to work. I walk and I will not use a walker. Mom and Dad hold my hands and replace my worry with hope. 

I am able to go home in five days. The surgery solves many problems I had been dealing with. Believing I have enough strength definitely heals me. 

Author statement: I am Aulton Joseph Grubbs. I want to show that like an old town, which is the meaning of my name, I have a legacy to create. I want to share my interpretation of events as an Autistic young man, from Tucson, who spells to communicate. This essay is about a surgery I underwent several years ago.  I feel obliged to show that I’m empathetic due to my personal experiences and that I am intelligent. Generally, I hope to make a statement about all people who do not speak; I have an understanding beyond expectation and I promise to devote my thoughts to writing for the betterment of society. 

Poetic Wishes for the World

 Joshua Greiner

Brynn F

 Advocating For Myself    

     In the beginning of my RPM journey, I had this insatiable desire to learn and do as much as I possibly could. Ready to conquer the world after years of silence, I had a lifetime of thoughts in my head. Perhaps I had the anger and frustration of a lifetime also. I wanted to prove myself and my intellect. I wanted to advocate for all non-speaking autistics. I wanted a "normal" education. What I wanted and what my unwilling body and nervous system could do were two very different things.

     I was burning out on autism and trying to do all I could to keep my head above water. I remained in denial. I pushed myself harder and asked for more work, more goals, and more activities. When all was said and done, I was overwhelmed and resented not being capable of living life to my interpretation of its fullest. I finally talked to my parents and advocated for myself. Having their support meant the world to me. I took a break from academics, learned how to conserve my energy, and accepted that it's okay to do what I can even though it seems my friends can do so much more. 

     Having time to be "me" lessened my anxiety and brought balance to my life. I still have goals and I still plan to advocate. I want to encourage others to advocate for themselves. To do life as an autistic is hard enough without adding our own preconceived notions about what we think we should be doing. 

Nadia Sohn Fink

-Nadia Sohn Fink, Rosh Hashanah 5783 (2022)

God was a firefly.

Harvest moon our witness.

God said weave the leaves

between the apples from the

Farmer's market and the

honey you didn't remember to get—

Recall your grandmother

God said hold her there:

Weave memory and light

Invite everyone in:

their grandmother,

what she always said,

what you forgot to tell her.

It's not too late or early.

Harvest moon nodded,

remembered his mother,

slipped behind the clouds.

God glowed green: Think!

Every thread

that's ever been still is!

Weave your book of life

With everyone's ancestor ink.

Thomas Callahan

 

The lightning sang me a thunder song

Then it seemed nothing is wrong

And wind was always like a child

Blowing, rushing, very wild.

NASA Webb Telescope Inspired Poem by Ryan Bellet

 

This poem is dedicated to my teacher, friend, and the most patient person I know, Kaira.

Nasa Webb telescope inspired poem 

8/23/22 

I’m amazed at the pictures from the Webb 

It makes me feel all miniscule 

And then my brain feels large 

It looks like Jupiter is in charge of the galaxy 

To ask for questions from space  

Is amazing as only a question could be 

To hear a black hole whisper and moan 

Is beyond my wildest dreams 

Only the moon is more powerful than these pictures 

It is the most light I have ever seen Jupiter in 

It makes the other planets seem like 

They exist to worship Jupiter