As I got some groceries at Target last night, the top of my list was toilet paper. I had to get some anyway. I saw many carts filled with toilet paper. There was no limit to customers. I grabbed what little was left, an 18 pack of Angel Soft. I figured that would keep for a while. This situation played out up and down The First State yesterday as it has across the country.
People are not necessarily panicking, they are preparing. For the worst. For a potential eventuality where they are forced to stay home for at least two weeks in case they get the Coronavirus.
As well as toilet paper, hand sanitizers and wipes are gone. As if they never existed. In addition, soups are disappearing along with other quick-fix meals.
With pretty much all major sporting events canceled, I have to wonder what folks will do at home. Will they play games with each other? Will they not venture out into the public? Will tv ratings reach all-time highs? We will find out in the coming weeks and possibly months.
While this pandemic is certainly a matter of grave concern, it can also be a time where we reconnect as families and count our blessings. Yes, our 401ks are taking a bath like never before. Yes, we could be unemployed or have to work from home. Yes, we could lose income. But this is a time that humanity has to come together and do the right thing. We are trying to prevent a deadly disease from spreading. From ravaging humanity, especially the elderly.
Some folks out there seem to STILL think this is no big deal. The normal flu kills so many people each year but this one hasn’t. First off, this is a new flu strain. We don’t know what it will morph into. The fatality rate is at least ten times higher, probably more. So if it does stick around we could potentially be looking at fatality statistics anywhere from 500,000 to 5 million. Each year. That is no joke.
I will fully admit I made light of it until recently. It was a bad flu I thought. But when the numbers started growing it became a harsh reality. The best way to fight this thing is to be prepared and use common sense. Be safe, wash your hands, and hold onto your loved ones.
I haven’t done one of these in a while. I spent the better part of tonight writing this. I hit some tough topics on this one. A way to purge and look back on my life and remember. Memories, good and bad, they are what make us who we are.
Before a secret is told, one can often feel the weight of it in the atmosphere.
On January 26th, 1948, a full moon shone brightly in the Winter sky. The next time the full moon will be that close to the earth will be on Monday morning at 6:22am. The next time you can see a Supermoon that close to Terra Firma will be 2034. Tonight, it is just Waxing Gibbous. It is at 97.4% of a full moon. And it is cold out. There is a frost in the air and the stars are shining bright. Winter is coming.
They are saying it is going to be a mild winter this year. Another La Niña. So this means I could probably lay on the beach for New Years.
It’s the middle of the night. Sleep comes and goes tonight. I’m feeling restless, more than I have in a long time. Afraid to close my eyes and afraid to stay awake. Work comes in three and a half hours. It will be a long day.
My arm is doing better. I had a case of hairspray fall on my left elbow a month ago. It hurt like hell when it happened, but only for a few minutes. But then a week later this… thing… started sticking out of my elbow. Like a Dr. Scholl’s pad golf ball. I’ve been to doctors a few times for this. I even had my first MRI. Not an experience I care to repeat. Last week I learned I had a slight tear in a tendon. So I’ve been on light duty at work for a month and will be for another few weeks. I work a tough job, but for scheduling purposes, there are reasons why I work that job. It isn’t for the weak, that’s for sure. But I feel the weight of age creeping up on me sometimes. An odd ache here, a desire to take a nap in the middle of a day off. And I’m not even fifty.
I haven’t been writing here as much as I could. I have plenty to say, and plenty or articles ready to pop. I’ve never had more research in my life. But right now, America and Delaware seem to be dealing with President Trump in one of two ways: it is the end of democracy as we know it or it is the best post-coital bliss ever. I don’t want to throw stuff out there that will get bypassed for yet another article about Trump. I’m also at that point in education where I have to start calling people and organizations out. Ones that, when I began this journey, I thought were on the side of kids. But they aren’t. The picture starts to get blurry and the colors start to merge. I wish I could say there are those that I thought were the “bad guys” but then I discovered they aren’t. But I can’t say that. Yes, Jack Markell will sail off into the sunset. Secretary Godowsky will go with him. But what Jack made for Delaware is still in play.
I have this sense of foreboding tonight. I don’t know why. Maybe I do. Things are going to change. I know this but I want to wish it away. Taking things for granted is never a good idea. I want things to be simple again. But they won’t be. The last time things were simple for me was in 1975.
The summer after Kindergarten, my mom had to have an operation of some sort. I couldn’t tell you what it was for, but it was enough for my parents to send me and my brothers to a family friend’s house for a couple of days. We went to see Peter Pan, the classic cartoon version. Afterwards, we went to our friend’s church. I don’t remember how it got to that point, but I remember the minister asking me if I had anything to say. So I told the whole church about Peter Pan. I went on and on and on. Everyone in the church was laughing and smiling. I didn’t understand at the time that they weren’t laughing at how great Peter Pan was, but the fact that a five year-old boy was talking about this in God’s House of Worship. Of course, I felt like the king of the world and the audience loved me. I was the star of the show.
That was the last time things were truly simple for me. Genuine, unadulterated bliss. When you are that young, the world revolves around you. You are the center of the universe.
I won’t be falling back to sleep tonight. I would be getting up in an hour and a half anyways, so what’s the point. I’ve already started my first cup of coffee. To me, there isn’t anything better than that first sip. Hopefully that, and a couple more, will do the trick for the day ahead of me.
Now I’m thinking of an earlier time, before Peter Pan. My family and I were in church. My Dad, Mom, my three brothers, and myself. All I remember was that I was crying because my Mom went up to get Communion. My Dad was holding me in his arms. But I felt lost and scared. I couldn’t have been older than two or three. My father pulled out a little toy giraffe, no bigger than my hand. For some reason, that giraffe gave me comfort. It eased my troubled toddler little mind. But I see it differently now. I see a father holding a crying baby who wanted his mommy. And in that moment, he found a connection. Instead of getting upset, he gave me something he hoped would give me comfort and a feeling of safety. It worked. I remember holding that giraffe in my tiny hand and looking up at my dad. In his eyes I saw a feeling of calm, of peace.
I haven’t thought, or written, about that moment in a long time. The last time I wrote about it was in 1988. I was in a creative writing class for the first half of my Senior year of high school. Our final project was to write an autobiography based on something important in our life. I wrote about my walk with God. And I couldn’t very well talk about God without writing about all the people in my life. This project became bigger and bigger the more I wrote. It was about my life, from birth until that very snowy January over seventeen years later. I believe it was about 24 pages, typed. I got an A on it. We had to read it in class. I remember a few of my classmates crying when I read it. I remember asking them later why they cried. They said they had no idea or close I was with God. I wasn’t a Bible-thumping evangelist running around my high school reading scripture every chance I got. But in my thoughts, I pondered and wrestled with questions of faith back then.
It’s always darkest before the dawn. At least that’s what they say. It is now 3:15am. My alarm will be going off at 4:30am. I’m leaving it on in case weariness overcomes me and I succumb to somnus.
I was a wreck last Christmas. I never got the tree fully set up. My son was transitioning to his fifth school since Kindergarten. In six years. It took its toll on me. On my family. I wonder sometimes if I will ever find a reason or answers to why my son had to go through so much at such an early age. I watch him sometimes, struggling with his disability. Those times when he asks God why he has to suffer through painful and repetitive tics. Why his mind sometimes feels muddled. Other times he refuses to believe in God because how could any God do that to a human being. I see the host of people who have come in and out of his life. Too much “goodbye” and not enough “hello”. I struggle with my own thoughts on this. When do I let go a little? When does my fighting interfere with his ability to self-advocate? He is fast becoming a teenager. That transition period between boy and man. When do I see the disability? When do I see the boy-turning-into-a-man chrysalis? Tourette Syndrome is not all he is. He has it. It affects him. But it isn’t his whole being. It is not his whole life. It is just baggage he has to carry with him on his own walk through life. One day, he will have to find peace with it. I pray that day comes soon, but all things come in time.
What madness has struck upon me during this waxing gibbous that I am poring all these memories and feelings onto the screen? I don’t know. But it feels right. Sometimes writing is my way of purging things. Or coming to terms. Reconnecting with the world. I can throw numbers and statistics and secrets on the screen all day long. But none of it means anything if I don’t have that reconnection. I can’t be tethered to education all the time. How I see education is not how most see it. I dive into the cesspools most don’t even know exist. Waters that don’t look that deep, but they will suck you in and drown you for all its worth. But it is worth plenty. I have no regrets. This is my way of walking away from it. At least for this moment. To see life beyond the lies. Because there is so much that human beings never learn in the classroom. The painful and hard lessons they learn in real life.
Neil Gaiman is one of my favorite authors. He has this uncanny knack for dealing with the most abstract of thoughts in the simplest of ways. So that anyone can understand it. The above picture comes from his Sandman comic-book series. It ran 75 issues, from 1988 until 1996. I didn’t catch on to this series until 1991. By then it was well-known. Each issue became a gold-mine when it came out. By the time the 74th issue came out, I was preparing to move to another country. Young love and a huge sense of wanderlust brought me to Sweden in 1996. I was there for two months when I walked into a newsstand one evening. I was killing time before going over to a friend’s house. I sold about 90% of my comic-book collection before moving and I didn’t really have much intention of picking up the habit again. But there it was, staring at me. Sandman #75. The last issue.
William Shakespeare appeared in an earlier issue of Sandman. Gaiman crafted a reimagining of the Bard’s inspiration for A Mid-Summer Night’s Dream in the story. Morpheus, also known as the Sandman or Dream, granted William Shakespeare the inspiration for all his plays in exchange for a boon. Shakespeare wrote two plays for Morpheus. The play highlighted in the earlier issue was A Mid-Summer Night’s Dream. But the last issue was based on The Tempest. Ironically, this took place prior to the pivotal moment in the series six issues earlier, but it served as the perfect moment for Dream to sleep.
I’m halfway done with my second cup of coffee. For the first time in well over eight years, I read the last issue of Sandman again. I am left wondering: do I inspire or am I inspired? Do I write for you or do you read for me? Do I amuse or am I your muse? Weighty thoughts, heavier on my shoulders by little sleep and not having the ability to dream.
I leave for work in an hour. This has been a distraction. Away from my fears, my worries. A distraction from a truth wrapped up in a secret. We all do this. We refuse to face a reality so we hide from it. We try to cover it up. But it’s always there, staring down at us like a Supermoon.
Sometimes you find something you forgot you were looking for.
This was the case today. My wife, son and I went down to Rehoboth Beach. Our destinations: Funland and some of the arcades. Just a loose, carefree trip with no hassles and no issues. As many who read this blog already know, I have a son with disabilities. Multiple disabilities. His main disability is Tourette Syndrome, but with that comes a host of comorbidities. Those include Attention Deficit Hyperactivity Disorder, Obsessive-Compulsive Disorder, and Sensory Processing Disorder. Sometimes they all collide at once and it results in an untenable situation.
This happened today. When we got there, we got some Grotto’s Pizza and walked down to Funland. My wife and son went on the pirate ship dragon ride and then we did the bumper cars. After, my wife wanted to chill on the beach for a bit so I brought my son to the arcade. You know those grappling hook games that usually cost a dollar? The ones where you have to position the hook over something, the hook drops down, and if you are very lucky it will grab the prize you wanted and you get it. I gave my son some money and watched him do his thing. Yes, I know these games are a big scam, and I tell him every time we go. He knows it before and after, but when he is playing it this seems to escape his memory. In a sense, it is like gambling.
I watched him getting frustrated after the third or fourth attempt and I told him he may want to give up. I got “the look” and was told to go away. Sometimes you have to learn lessons and this was obviously one of those times. It’s happened before with a simple shrug and then he gets over it. Keep in mind, there are tons of people in there and sounds coming from all the different machines. After he had been on two amusement park rides with thousands of people all around us. The overwhelming smell of different foods and the sea salt smell coming up from the ocean, the sounds of people laughing, talking, crying, the sights of flashing lights in the arcade, bumper cars coming at him, the slight ugh feeling from the pirate ride, and severe frustration building up from the rigged grappling hook games. I advised him he didn’t have too much money left and he might want to save it for something else. This is when his Obsessive-Compulsive Disorder kicked in. He had to beat this game of rigged chance no matter what. It was all-consuming to him. After he blew his money he became very upset.
I told him I would talk to the manager about the hook did grab three things on three different games only to release the object of his choice and drop it in stunning defeat. The manager said that is just how the games are set up but people do win prizes at times. I knew this. But I had to make sure my son knew it. He was allowed to spend x amount of money and that was it. He blew it in ten minutes. Like I said, these things happened before, but today was just the perfect storm of whatever was bubbling up inside him heading up to the surface at lightning speed. I called my wife and asked her to come up from the beach. She came up and we tried to console my son. We could have given him a million dollars right then and there and it wouldn’t have mattered. Words were said, and we were all upset. People were looking at us. This happens with children with disabilities. For us, this is normal. For those watching who don’t have children with special needs it is like watching the worst dysfunctional family ever. I’ve grown immune to this over the years and I don’t let it bother me. They haven’t walked in our shoes, so they just don’t know.
I decided to get something to drink. If there is one thing I’ve learned over the years, it is this: when both my wife and I try to help him, it seems to him like two against one. One of us had to walk away. That was me. I came back and I took over. My wife went back to the beach and my son and I sat there for about ten minutes. Not speaking to each other because I knew he needed his space. We got away from the crowds to a quieter area. All of a sudden, he got up and just wanted to walk. Sometimes the best way to get out of a storm is to walk away from it. We checked out some of the shops on Main Street. Tons of stores all around. He was looking at phone cases in one store. One of them had a buy one get one free sale. He called my wife who was able to find her serenity watching the waves come in from the Atlantic Ocean.
We stopped by Snyder’s Candy Store. He actually had a lot of fun in there. They had Pez dispenser collections with sets of four Presidents in them going all the way back to Franklin Delano Roosevelt. There were action figures and candy-flavored crickets and all sorts of funny distractions for him in there. The store was empty aside from us and the three workers. My son found a little canister of “thinking putty” and asked if he could get it. We have given him putty to use when he gets stressed out at times and it usually does the trick for him. I said okay but he was still looking around. I was looking at some of the different candies the store was selling.
Flashback to 1997. At the time, I was living in Sweden. That winter, I was in a candy store and they had these chocolate candies called chocolate rum balls. It was a ball of chocolate with rum mixed in with chocolate sprinkles around it. During the next five months I lived outside of Stockholm, I would frequently visit this store and get bags of these chocolate rum balls. When I moved back to America, I couldn’t find them anywhere. When I went back to visit some friends in Sweden in 1999, I brought a whole bunch back with me. Ever since then, if I happened to be in a candy store, I would sometimes ask “Do you have chocolate rum balls?” “Sorry, we don’t.” After years, I just kind of gave up.
At Snyder’s Candy Store, I asked the cashier if he had these. I think he thought I meant actual liquid rum was inside of them and he said they didn’t have them. As I was paying for my son’s thinking putty, on the top shelf of the chocolates right next to the cash register they were there. I yelled out “Oh my God, they have them!” My son jumped back at his Dad’s weird moment of excitement. I bought a quarter pound of them which gave me about fifteen of them.
My wife called and she was getting something to eat at a Mediterranean restaurant so my son and I walked back to meet her. We were all fine again. A happy family. He had his thinking putty, my wife had this dish she raves about every time we go to Rehoboth, and I had my chocolate rum balls I was looking for the past seventeen years. Of course, the moment when only a 12 year old could give when telling my wife what I was eating with his silly grin didn’t escape me. I offered some to him, but I think he thought his dad was a very odd man at this point and said no. I savored every single one of those chocolate rum balls. The taste brought back the memories of a 27 year old young man in a foreign country who missed home and knew he would be heading back at some point in the future. I knew the language enough to get by and I had friends there, but it never felt like home. In the winter, it could get very lonely with only a few hours of sunlight. In the summer, I would frequently wake up at 2am in the morning as the sun came blazing in the window. The circumstances that led me to Sweden were long and varied, but those circumstances were changing. It was hard to leave, but it would have been harder to stay.
But I always missed those damn chocolate rum balls that were as elusive as a shooting star on a cloudy night. I wasn’t meant to stay away from circumstances which led me to where I am now. If it meant not eating chocolate rum balls for seventeen years, that was what had to be. Life had an unexpected journey waiting in the wings and I had no clue about any of it.
Today, my long search ended. I was able to taste memories long since forgotten. Today was a day of senses for my entire family. Sometimes they got to us, and other times they provided us comfort and strength. Life isn’t perfect. It never was and it never will be. There will always be hurdles. I accept that. I have learned, and continue to learn, when my son needs my wife or I and when he just needs to work it out himself. Sometimes I stumble with this reality. Sometimes my patience is stretched to its limit and I lose my cool. We all do this. We all have our inner coping mechanisms that allow us to ride out any storms life throws at us. Sometimes it is thinking putty. And sometimes it is chocolate rum balls.
As we drove back from the beach, I found myself lost in thought. Just staring at the setting sun and seeing the beautiful farms of Delaware all around me. My son was asleep in the back seat and my wife had headphones on listening to music. It was quiet. Serene. I wouldn’t trade today for anything. Spending quality time with my wife and son, for all the angst in the beginning, was worth it. Sometimes, when they don’t know it, I just look at them both and feel nothing but love. These two people who God sent into my life. The woman I love so much and the son I am meant to teach, guide, and love as long as I am able to. God threw an extra piece in with his disabilities. I don’t write much about the daily situations that manifest as a result of those disabilities. But they happen. It is as much a part of my life as anything else. I could complain about how tough it is, but that doesn’t help my son. I can try to mitigate situations the best I can, for him and others. Which always leads me back to here.
He is why I fight. Him, and every child like him. The adults can bicker and make their silly rules, but I can clearly see that what matters most is the kids. The ones who don’t always have someone looking out for their best interests. The ones who don’t know half the crazy battles us adults play on their behalf. The ones who are shut out of those conversations. The ones who don’t get to decide where the money goes. But these decisions affect their lives and play into their education. Every subject I write about on here, I question if the things I find are good for kids. Sadly, the answer is no most of the time. This causes me to get in tug-of-war fights all the time. Even my allies question what I do sometimes. Some people think I’m crazy doing what I do. Let them. It’s not about them and it never was.
Today was just another walk on my journey through life. It was a special day, with highs and lows, just like any other day. Little victories to be won and moments to deal with. But I have to think I was being told something today. That at the moments when giving up seems like the best thing, and all you want to do is ask why, that I have to get past that and ask God to help my son instead of me. He answered my prayers. And I got a little extra something in the bargain!
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
One friend. Just one. Sometimes that’s all we need. Just one, in a lifetime of people that pass through.
In 1981, I moved from Roanoke, VA to South Salem, NY. Entering 6th grade, I was scared and nervous. I was an okay student, but I had some minor disabilities in the form of attention deficit with a touch of hyperactivity. When we moved that May, our new house wasn’t finished yet, but we sold the prior house so we had to rent a home for about three months. For a month and a half, I went to an elementary school in Chappaqua, NY. For about three weeks in July, we moved in with my Aunt and Uncle in Brookfield, CT, on the shores of Candlewood Lake. Finally, in the beginning of August we moved to our new home in a small residential neighborhood in the bottom southwest corner of NY state. If you walked through the woods about 1/2 a mile, you would be in Connecticut.
Within days of moving in, I met the Eds. Two boys, my age and in the same grade, both named Ed. All three of us had a love of comic books, so the first day we met, we were trading comics left and right. Both of them played soccer, but I wasn’t interested in the game having done horrible a year prior.
I had a very difficult time making friends at my new school. I had a southern accent, and it quickly became apparent I was a little different. As well, I stupidly asked a question in 6th grade math when talking about rocks. “Are rocks alive?” branded me for a few months as the village idiot. And a month into school, when we could run for town positions, I decided to run for town clerk. I had to give a speech at an assembly, and after uttering the words “My name is Kevin Ohlandt, and I’m running for town clerk”, most of the school was heard repeating these words when I would walk by. My reaction was fierce! I started talking back to those who taunted and teased me, and threats of “kicking my ass” soon followed. It became a vicious cycle of taunt & tease, react, threats, and then me backing down and often crying or running away from the situation.
The two Eds though, they never joined the crowd. After school, I would often hang out with them, usually exploring the vast amount of woods behind our houses. Sometimes a bunch of neighborhood kids would play football or baseball, or in the summer, very large games of Flashlight Tag at night. We would ride our bikes, go to new houses being built, or throw rocks on a frozen pond in the winter. Eddie and I would walk to the bus stop almost every day.
As sixth grade led to junior high school, things got progressively worse for me. Instead of battling one school, it was now four rolled into one. More enemies. Fights happened, usually with my “ass getting kicked”, but I still reacted without thinking. Before too long, I was the one starting things. But through it all, every day, I would sit at lunch eating with the two Eds and some other kids. After school, more of the same.
During 7th and 8th grade, with my obnoxious big mouth and instigating tactics, I was often told to sit at the front of the bus. Usually one of the Eds would sit with me. He was called Eddie by most. Eddie was the tallest of the three of us. He was a gentle soul, always smiling. He could be quiet and reserved at times, but for the most part we would talk and joke around. I nicknamed him Smiley the Terrible. I can’t for the life of me remember the context of the nickname, but terrible is the last adjective I would ever use to think of Eddie.
In 9th grade, still in Junior High School in our district, Eddie would share stories he wrote. For a 14-15 year old, he wrote some very intelligent, well thought-out stories. It was better than a lot of the stuff I had to read at school! His imagination knew no bounds, even getting into some physics stuff before our time.
Things started to change when we entered high school. Our interests changed. The two Eds were heavily involved in soccer or other sports, and our four years of shared CCD classes ended after we were all confirmed. I was still into comic books, even working at a comic book store over the border in Connecticut on Saturdays. As friends tend to do at different points in our lives, we drifted apart. I was very involved in youth groups and church activities, but that was in Connecticut. We still talked, all three of us, but the conversations were more about what was going on or what girls we liked.
When I was in 11th grade, in 1987, I participated in a large church retreat called Emmaus. For first-time participants, we were called candidates. Emmaus was essentially an unconditional love fest retreat from Friday evening to Sunday evening. Prior attendees, both teenagers and adults, would work the retreat. As part of Emmaus, parents were encouraged to reach out to their teenager’s friends to write letters to the candidates. I received letters from the two Eds. Eddie wrote the following:
Many people used to ask me why I was your friend. “Why not?” was my usual response. Perhaps they understood, perhaps they didn’t.
Eddie went on to write about some other things, but he concluded with this:
I’m glad you are my friend just because you are.
I received many letters from friends and family that weekend, but this was one of the ones that touched me the most. No matter what, even if I embarrassed him with my actions, Eddie was committed to being my friend. I had other friends, but it’s rare to have a friend that goes back years as a kid with disabilities.
Towards the end of our Senior year, Eddie and I talked a bit more. Perhaps it was nostalgia creeping in as we prepared to embark on the next chapter of our sheltered lives, or maybe we found common ground. Whatever it was, it culminated at a party at my house a month after graduation. My parents were away, and my two older brothers and I had a huge party. The two Eds came, and I remember the three of us talking in my backyard. We made a toast to the past and to the future. To my recollection, it was the last time all three of us were together.
After a year of trying to “find myself”, I moved to Pennsylvania with my parents and attended community college. The first few years there were very rough for me. Transition and I have never been good friends. In the Fall of 1992 I would transfer to Cabrini College in Radnor, PA as a junior. The summer before, I had the coolest job ever. I was an editor for a magazine called Comics Values Monthly. The owner of the comic book store I worked for back in 1985 started this magazine a year later after he closed the shop. I continued to work for him throughout high school. In 1991, his magazine was really taking off, and I offered to help. Once a month, I would go up to Connecticut and New York during weekends and submit freelance work I did for the magazine throughout the month. I went over to Eddie’s house one night during the summer, and we chatted a bit. He was attending Washington College in Chestertown, MD.
On October 16th, 1992, a friend was driving me to a party. A wicked storm came in, thunder and lightning all over the place. As we were driving, I felt something. I knew something happened. My heart felt a sudden emptiness, a vacancy. I didn’t know what it was, and it scared the hell out of me. All I knew was that someone, somewhere, that I was once close to died. I knew it in my conscious mind and I was sad. By the time we got to the party, I put it out of my mind and had the kind of fun you can only have in college!
The next day, I felt a need to go home. I was at Cabrini for a month and a half, and it was a whirlwind of studies, partying, working on the school newspaper, and working for the magazine. I needed a break. My parents had gone away that weekend, so I had the house to myself. Early that Sunday morning, I received a phone call. It was the other Ed’s mother. I will never forget the words. “I hate to tell you this, Eddie died Friday night.”
Eddie became involved in theater at Washington College. While working on lighting for an upcoming play, he was electrocuted. He died instantly. The horrible loss I felt that Friday evening, over 100 miles away from Chestertown, MD, was Eddie passing away. I found out later it was the exact same time of his death.
The next few days were a blur. The following Wednesday was Eddie’s funeral. I was unable to attend the wake the night before. In Pennsylvania, it was raining non-stop. I left very early, at 5:30am in the morning. As I drove along the Delaware River on the New Jersey side, I put a tape on of U2’s Unforgettable Fire. The title track of the album was playing and I felt Eddie’s loss more than I had at any other moment. After the song finished, I put on a tape by a singer called Michael W. Smith. He is a Christian singer who had some moderate mainstream success in the early 1990s. He had just come out with a new album, and one of the songs was called “Friends”. Another singer released this song years prior, and the first time I heard it was on my Emmaus weekend back in 1987. As the song played driving up to Eddie’s funeral, I thought of his letter and the words he wrote.
Packing up the dreams God planted, in the fertile soil of you. Can’t believe the hopes He’s granted, means a chapter in your life is through. But we’ll keep you close as always. It won’t even seem you’ve gone. Cause our hearts, in big and small ways, will keep the love that keeps us strong. And friends are friends forever, if the Lord’s the Lord of them. And a friend will not say never, and the welcome will not end. Though it’s hard to let you go, in the Father’s hands we know, that a lifetime’s not too long to live as friends.”
While the words gave me comfort, I was also angry. How could God strike someone down in the prime of his youth. 22 years old. He had a whole lifetime ahead of him. I regretted losing touch with him over the years. I didn’t realize it at the time, but he inspired me to write. He got me to take a journalism class in high school, and his many stories spurred my own creativity. But somewhere along the way, the focus shifted between us. When I was in high school, I was very involved in theater, whether it was bit parts in plays, or helping to be stage manager during our high school’s variety shows. This extended into community college for many years as well. Even after college, I still got parts at my old community college. But this evolved into writing. Eddie went from writing to theater. He was one of those guys who really didn’t have a hateful bone in his body.
As I was writing this, I decided to Google Eddie and Washington College. I knew he had been electrocuted while working on lighting. But I didn’t realize he was working on a particular chandelier in the auditorium as part of his drama thesis. Something about this gnawed at me. Being the packrat I am, I tend to keep everything. When I pulled out Eddie’s old Emmaus letter, I remembered he wrote me a letter when he was at Washington College. There was something about a light in the letter. I pulled it out of the dusty bin, and read it…
There’s a neat light in the theater that I was shown my freshman year here, it’s kinda like a night light, but it isn’t. It’s really peaceful though and if you ever get a chance to get down here, I’ll show you it.
I wish I would have taken him up on his offer. It’s been 23 years since Eddie died. Whenever I used to go up to our old town, I would always make it a point to visit him at his grave. In the year after he passed, sometimes I would spend hours there, talking to him, or just thinking, or praying. I haven’t been up in that area in a long, long time. The last time I was there, I was married and had my son for quite a while. Gone were the days of my youth. This was before I knew of my son’s disabilities and the battles ahead. Before a blog even entered my mind. I was just a dad, struggling with myself during those transition years.
A couple years after I moved to Delaware, I played hookie from work one day. I went for a long drive, not sure where I was going. I just went where my car took me. I found myself in Maryland, in a place called Chestertown. I drove past an old college, but I didn’t make the connection. This was where Eddie breathed his last. Even after I left this town and the beautiful river that went into the Chesapeake Bay, I didn’t know. It wasn’t until years later when Facebook took off and I reconnected with old friends, that I found out. Someone said Washington College when talking about Eddie, and my answer about why I found myself at Washington College was answered. I suppose my subconscious knew.
I think about Eddie from time to time. If I hear mention of Chestertown or Washington College, his smiling face appears in my mind. Recently, a friend of mine was telling me about how her daughter goes to Washington College, and I started thinking about Eddie again. I wanted to write about him, and honor my friend. My friend who was there for me when so many others weren’t. When peers were saying why and he didn’t care. Everyone needs a friend like that. Everyone needs that one person they can turn to, no matter how bad it is, and just knowing they care makes all the difference.
Sometimes I wonder about how I find the things I do with this blog. How I find the strength to keep going, to put something up on here every day. The little things, like looking for an answer to a question, never finding it, but the seeking opens up a door to something else. I’ve written before about how another person in my life gave me inspiration when I first started this journey. We have no idea how much the departed can impact us, how they push us in certain directions if we are open to it. If we listen. Sometimes, when I write, I go back and read it months later and wonder where I got those words. I like to think Eddie, and others gone before and since, are guiding me under the watchful eye of God, who I have never given enough credit for the wonderful things in my life: my wife, my son, my friends, my family. The sunset that stretches across the sky at night on my way home from work. The moments of absolute stillness when you feel like you are one with the world. The nights when you are alone with nothing but the stars and you get lost in the vastness of it all. That’s all God. Something I need to remember.
It was so long ago, when my friend was in my life. But he is still here, in my heart and even in my words. He reminds me that God is still a part of my life, even when I don’t think He is there. Part of the reason I stand up for children with disabilities is because long ago, Eddie stood up for me. Eddie may be gone from this world, but he still burns brightly in my mind. A light that he found, an unforgettable fire.
Flashback: September, 1986. The three of us go to a movie in New Canaan, CT. It’s a movie about a group of friends who have a moment in their lives when they have to make a journey to find a dead body. But like most things in life, it doesn’t go the way they planned.
I never had any friends like the ones I had when I was twelve. Jesus, does anyone?
I cry every time I see the end of Stand By Me now. Every single time. I think of Eddie, and what he meant to me, and still does. Thank you Stephen King, for writing those words in your original short story called “The Body”, adapted into Stand By Me. Just seventeen words to encapsulate a time when one person made a difference.
I wish I could answer that question with an easy simple sentence, but I can’t. Before my son was diagnosed with Tourette’s and all it’s friends, I can honestly say I didn’t give too much thought to special needs children. It just wasn’t in my limited radar. They were there, and I would see them sometimes, but it wasn’t a major part of my world. And then a funny thing happened. It became my world. My family became very different then. Every moment, every action, I saw the label. I saw my son as different, as “not normal”. I was in denial for a long time. Not because of him, but because my mind, my heart, it couldn’t accept what was right before my eyes.
Over time, this changed. My son’s disabilities were with me every waking moment. I tried to hide from it, to run away from it, but they were there, saying “Help me Daddy”. And I’ve tried. For the longest time I thought if I just treated him like every other normal child, maybe things would change. But they didn’t. I had to take a strong look at myself before I could accept him for who he was. I had to, and still have to, realize that it doesn’t matter what others think. It doesn’t matter, at all. Let them judge, let them stare. It’s reality.
First and foremost, I am a husband and a father. My family isn’t the perfect Norman Rockwell family that so many dream of. I know I did for a long time, but it’s just not in the cards. But what I have is something better. I have something real. Something so crazy and imperfect that it makes the most sense in the world. I get to see something some can never see. I see human emotion in it’s pure, truest form. Love, anger, sadness, happiness, jealousy, hope. It’s all there. My son has the ability to display all of these. But it’s more than emotions. It’s like they are colors. Beautiful, radiant colors, that shine the brightest in his soul.
Conversations I had with people in the past used to consist of my latest TV show craze, whether it was X-Files, Lost, or Game of Thrones. I would talk about music, some politics, but for the most part I was a very self-centered person. My world was MY world and I felt people were crazy for not liking what I liked. Then a little thing became a big thing, and before I knew it, I was fully immersed in a cause. It didn’t happen overnight. It built up for a long time, and I didn’t even realize it.
When my son started having numerous problems at his old school, I figured he was just a misfit of sorts and he liked causing trouble. But it continued, and I knew something was off, but I didn’t know what. Eventually, I found out. He had Tourette’s Syndrome. And ADHD. And Sensory Processing Disorder. And OCD. And Anxiety. And Depression. He wasn’t even in double digits yet, and he had all of this to look forward to. I didn’t have the slightest clue how to help him, and I’ll be honest, sometimes I still don’t.
I don’t expect perfection. Let’s get that on the table right now. I accept mistakes, if they are made with the right intentions. But when the “old school” denied my son services that should have been his by federal law, I was pissed off. When I fully realized the scope of it all, I was well beyond pissed off. So I researched everything. Schools. The DOE. The Government. Common Core. Rodel. Smarter Balanced Assessments. The Charter School Network. What I found was a clear path, visible to those who follow the steps.
It’s the oldest game in the world. Survival of the fittest. Cavemen did it, and those in power do it now. They don’t want to relinquish their power and they will hold onto it as long as they can. Those who get in their way are pushed aside. But something new and bizarre is happening in the power landscape. The Power People are getting together and banding together. They are forcing their will on the people through coercion and specific techniques. And it all begins with education.
We think we know what’s going on, but there are depths and levels of which most people don’t have a clue. It’s a game of chess, and their pieces have been placed in a potential checkmate position for a long time.