Back in Alex’s Junior year in high school, there was a survey given to the student body asking questions about respect. In the results, over 75% of the student body said there was “little to no respect” given to other students by students. Also, over 60% of the student body said there was “little to no respect” given to students by the faculty. And even further, over 65% of the student body said that each personally suffered 3-4 acts of disrespect daily. Alex expressed anger and frustration to me about all of it. And I told him to, “Write a letter, babe. Coming from your perspective, it will be like dropping an asteroid into the ocean.”
So, that night, after dinner, he wrote. I read it and helped him to edit. And the next morning, he brought the letter in and gave it to his teachers. Here are some highlights from that letter:
While it is all well and good to say that I have to bring to your attention how students and faculty disrespect other students, the real problem is much deeper than those people who have been disrespected and have not spoken up.
The real problem is fear.
The school faculty fear getting involved. Which, in turn, keep the school faculty from being the leaders that they should be. Only the school faculty can set the tone, create and enforce policy.
The survey results show that a group of people who have amoral attitudes and act out with that mindset are being supported in those actions by the school faculty. That support comes from no real, sustained, public consequences. Also, ignoring the problem is affirming the actions. And too, I would go as far to say that the support of a certain demographic of students who are white, affluent, involved in sports and are in the “popular” clique also supports the continuance of the disrespectful behavior.
The action you spoke of during the assembly was to “monitor the halls.” Wasn’t this already being done? And by saying this as a follow up to the survey results, and it was already being done, aren’t you communicating that we are going to do nothing as a faculty?
I have no friends. I am going into my third year at West High and I have yet to have anybody who is not in a wheelchair respond to me.
Again, the real problem is fear.
People walk in front of me all the time.
People push around me all the time.
People touch my chair all the time.
People who do not need to use the accessible door, run in front of me to use it all the time.
People never say “Hi” back to me when I talk to them all the time.
People never invite me to be a part of the group.
People laugh at me all the time.
I spend most of my time around the people that care for my needs because of this. I do not feel the drive to be social. I feel rejected and misunderstood. And this is not just the students, but some of the teachers as well.
And I am left with this message from all of you…
You all fear me.
My chair is my legs and my arms, and I do not need it because I am overweight. The medication for my disease makes me bloated and overweight, even though I eat 500 calories a day. You cannot catch my disease, it is genetic. I have to work four times as hard as other people because my disease causes me great fatigue, and I am on the honor roll because of my hard work. I smile and I am friendly all the time, yet, I have no one to eat lunch with.
I think that if this is happening to me, I can only imagine that it is happening to the student with a darker skin color, or the student who came out as homosexual or trans, or the student from another country, or the student who has a different religion than a Judeo/Christian one, or the student that has been socially labeled as not “one of us” by the elite.
If you want to fight fear, you have to use empathy, truth and communication.
If empathy is not natural, there has to be law.
And if the law is broken, there has to be swift and just consequences.
And also, if the law or the system itself is broken, there has to be justice for all of those oppressed.
If truth and communication is not known or encouraged, then walls must be broken down to allow for these two to flow.
But, above all, before any actions are taken, the question must be asked and answered:
“What does Parkway West truly value: People or prestige?”
My parent has taught me that the most beautiful person in this world is a person who stands up for those who cannot stand up for themselves and is not afraid to speak out. I cannot stand but, my voice can.
I hope that there are more beautiful people at this school who will join me.
This letter that Alex wrote, in his voice, was from his heart and perspective, flying at an altitude of four feet below the radar. He believed in equal Liberty for all. He believed in social justice. He believed in sharing knowledge and Love.
Alex is and will always be a gentle warrior who wanted to leave this world a better place than how he found it.
This warrior found solace, excitement and passion in video games. Overwatch was his top favorite. He also played World Of Warcraft, all the Halo games, the God Of War series and lots and lots of fourty year old classic games that we shared together. Also, he loved pinball and would play like the Pinball Wizard as many times as he wanted in our own arcade in our basement.
His other passions were music, comics, shows, movies and all of nerd culture. We quote The Office all the time to each other. All of our favorite Dwight and Jim quotes were in a constant stream around our hose. And my impressions of characters from The Walking Dead, Star Wars, Marvel Cinematic Universe and others kept Alex laughing that pure, giggling, boisterous sound that if you ever heard it, you were laughing too.
Alex’s deepest Love was for animals. He shared two dogs with his Aunt Julie that she owned, Bailey and Zoe. And Alex volunteered as an online activist and data researcher for PETA.
Alex’s body had a disease, Duchenne Muscular Dystrophy. This genetic disease destroys all muscle cells in a human body, including the heart muscle. In January of this year, Alex’s body developed congestive heart failure. This was not expected. For the twenty-two years previous, his body’s health was as stable as rock. But for an unknown reason, we cycled through Barnes-Jewish Hospital six times from January until April during a worldwide pandemic. At the end of the last hospital cycle, we had gotten the balance of fluid, medicines and nutrition just perfect and broke the cycle. His body was on the mend and we had all gotten our vaccines. But, on May 9th, Mother’s Day, Alex’s body went through a massive heart attack, or pulmonary attack. His body just could not take the strain anymore. This was also not expected.
I believe that what actually made Alex’s body fail was not the disease it was afflicted with. But, the emotional anguish and trauma that a criminally mismanaged pandemic response, a genocidal social justice policy and all the other failings of an egotistical sociopath, his administration and family forced upon an impoverished, disabled, isolated human. And if Alex knew you supported these people, he did not consider you his ally.
Alex himself is not really gone. His body is going to recycle like all of ours do and will. But, Alex himself is energy. Einstein, when creating his equations for explaining mathmatically how our Universe is constructed, came up with The Law Of The Conservation Of Energy. This law states that “energy is neither created, nor destroyed but, merely changes form”. This law applies to all energy, even the energy that the thoughts inside your head generate.
Every photon that has ever been reflected off a loved one’s face continues to travel through the Universe as Light waves. Every degree of warmth that you ever felt from an Alex hug transmits from one person to another to no end. Every kinetic action. Every finger Alex tapped on a button is Alex’s energy reverberating across our existence for all time.
In middle school, we first found out about Alex’s body’s heart issues. These issues were severe enough to warrant Alex having to agree, sign and carry a Do Not Recussitate order in his backpack along with his crayons, books, homework, art and sewing projects. Right after a meeting with his specialist, Dr. Anne Connley, who explained to Alex all of the consequences of this diagnosis, Alex asked me, while we sat in the rain outside our house, waiting for it to slow down so that we could travel up our ramp system into our home…
“What happens after I die?”
I said to him, “First, I have an idea, not a belief, that all of the Love we give, and all the Love we recieve, is the paint in which we create our own afterlife place. You become the painter. You create all that you see from that Love. And what you create can be as big as entire universe.”
“But, what will it be like when I am there?”
I further explained, “You will probably wake up in some place familiar and safe, like your room here at home. At first you may just think it is another normal day. And maybe, you get up out of bed and start to walk down the hall. Then, you will realize, “HEY! I AM WALKING!” and then you will remember this conversation and then go, “Ah crap. My body died.”
“Will I be alone?”
“Not for long. For where you will be will have nothing called Time. You will no longer be bound by it. And in the speed of your thoughts, a lifetime will have passed here and all those that you Loved will be on your side of the fence. And with an additional thought…of who you would like to see, we would be there with you in your own Universe.”
All of us in our own way has tried to prepare ourselves for the moment of Alex’s death. We do this for all of our Loved ones, be they two legged, four legged, or no legged. They are our family. Even if thier death is sudden, or takes a long time, we all hope for a last minute miracle. That some doctor, or magick, or wisdom is going to keep them here with us. And it is that hope that makes the moment of death so devastating.
Acceptance of our inevitable mortality and our Loved One’s is really the only choice we have.
If we can accept this then, what we are left with, all that we really have, are those moments we share together. The time, be it a lot or a little, is deeply precious and should be appreciated in the now as much as we can. Including this one. This is all we have. These moments need to be filled with as much Love and Light as we can muster.
One more story.
When we went to Disney World for our Carribean cruise and park visit, Alex was big enough to go on The Pirates Of The Carribean ride. This was also the time of the big Pirates Of The Carribean movies. Disney was adding an animatronic Johnny Depp to the ride. Alex had a fear of the dark. And when we went to the ride, stood on line until we got to the boats to ride the ride, Alex was like “no way”. So, I took him outside to calm down and we went off the main path to one of the smaller hidden paths because we could be more comfortable there in the shade.
As we sat there, a Disney worker appeared from nowhere and approached me. “Are you both going to be here awhile?”. I said, “Yes, we will be here a bit.” The cast member then smiled and said, “Wait here. Do not move.”
After about ten minutes, a gate disguised as a hedgerow, pulls open that is a few yards away from us. A huge crew of people are pulling stage platforms, scenery pieces and I remembered that they do this show next to the ride called “Pirate Training”. I said to Alex, “Hey, looks like pirate training is about to start, do you want to…” and my voice trailed off when I saw Johnny Depp come through the gate and walk straight towards us, looking at me and Alex, smiling.
He kneeled down and spoke directly to Alex for what seemed like a long time about our vacation, where we were from, have you been on the ride yet. Alex just spoke to him like he was speaking to any of us as casually as if he had known him all his Life. Then, in character, Jack Sparrow asked Alex, “Are’ya wantin’ some training, mate? I’con show’ya how to use a sword.” Alex looked at me first with his, “Is it okay?” look. I nodded frantically like a fan girl and then, after getting him up, Alex was still partially ambulatory at this point and could stand and walk short distances, took him by the hand and lead us to a waiting area.
And then, through a blur of juggled camera and tears, I watched Alex swashbuckle with Jack Sparrow, in front of crowd too large to even estimate. After they returned to me off stage, Johnny Depp thanked us both, and we thanked him and we went to the gift shop and got his pirate hat. And…Alex then rode the ride with me and broke his cycle of being afraid of the dark rides.
You can see that this room is filled with memories of Alex. Pictures, his creativity, moments of his Life that all of us have shared with Alex. What all of these symbols show are not only how much Alex was loved but, all of these symbols are of when Alex was at his most alive. Everything I have shared in these words are of when my Alex was his most alive. Keep those moments alive inside yourselves and share those stories of those moments with everybody who will listen because that is what molds all our futures, Love and Light.
A wake will be held for Alex on this Friday, May 14th at 3pm until 8pm. Then, on Saturday, May 15th, there will be a memorial service at 11am. These will be located at Kutis Funeral Home on Gravois. Please come, share stories, and Love and Light, if you are able. And please, wear masks.
If you would like to donate money to charity, instead of giving flowers, please consider that following charities:
Directions to Kutis: