Tag: friends

  • Friendship and Resilience: One Link at a Time

    Friendship and Resilience: One Link at a Time

    I’ve never been good at maintaining relationships beyond the present moment.

    I know people who have maintained friendships since grade school. Grade school. They became friends before they were teenagers and still talk to each other twenty or thirty years later.

    I know other people who do yearly trips with college friends. Trips. They board an airplane and fly to another location to play golf, gamble, or whatever it is that friends who have known each other for twenty years do.

    These are such foreign concepts to me.

    After each move in my life, I started over. Friends from our first apartment in Connecticut became memories once we moved across town. When we moved to Florida, it was like starting over, except for periodic visits from family to keep that connection alive.

    After I walked across the stage to get my high school diploma, the four years of bonds that I built were broken and discarded. At 19, I joined the Army and left Florida behind, too, once I left for basic training. I spent my entire enlistment overseas, and trips home were infrequent. Since my neighborhood friends were away at college, they, too, became artifacts of a different time.

    The first person who spanned multiple stages of my life was my friend from the Army who looked out for me when I arrived in Germany. She was pregnant when I arrived, and when she had her daughter, I became a de facto godfather and uncle. She left the Army and returned home before I did, but after my enlistment ended and I returned to Florida, I would visit her and her family periodically.

    For the few years I spent in Florida after the Army, I started another life as my professional career began. I was part of a group of young, single professionals, and we became friends and spent time together outside of work, too. There were friendships, community, and dating, but I set those aside when I took the opportunity to leave the heat behind and move to Colorado.

    Colorado was another opportunity to start over. I didn’t know anyone, but my friend from the Army became a flight attendant, and Denver was a hub for her airline. We were still in contact, and when she had a layover in Denver, we were able to see each other. I still occasionally visited her family and also joined them on a trip to China.

    Eventually, though, even that relationship started to fade. She would get married, and so would I, and I was grateful to have her at my wedding before our lives went in different directions.

    After my son was born, I felt like things might be settling down. I had a group of friends who were married and starting families, and we developed solid friendships as the kids grew up together. For a few years, especially with one of the families, it felt like the kind of lifelong bond that I have seen others have. But a job offer across the country pulled us from that life and dropped us into a new one where we knew no one and had to start over.

    Leaving our friends this time was tough, both because of the connection we created and because we were alone and isolated when my son began having seizures. For a few years, every relationship was transitory. Doctors, nurses, and staff were the most consistent people in our lives. My son struggled to maintain regular attendance at school, which left him as a constant outsider as the other children formed bonds. He longed for his friend in Colorado, the last stable friendship he had. We were lucky for a few years to travel back to Colorado and spend time with them, but it wasn’t the same.

    Even after he was more stable, his health and the constant appointments made his attendance spotty, further impeding his ability to form friendships. It seems as if just when we would find a sense of routine and normalcy, the universe would use its cosmic hand to shake things up.

    The pandemic hit and separated the world. The move to an online school, separate from the public school his friends attended, created more distance. Finally, as the world opened up and we found a school we believed was right for him, we left the city for the suburbs, and those tenuous relationships we struggled to maintain eventually faded.

    In some ways, this latest iteration of our life feels settled. The teachers and community at my son’s school provide structure and consistency, which helps form strong relationships. However, on a personal level, at a smaller scale, it feels temporary.

    Transitory.

    The people I see every weekend at tennis disappear when the courts close until we pick it back up in the spring. We see similar faces every summer during baseball season, but only during the games and never beyond the playoffs, while most of the players attend the same school and have a year-long connection. It’s wonderful to have those circles to return to, but they are scattered rings rather than connected links in a chain.

    More and more, it feels like those links close as they fall off the chain, preventing them from ever being reattached. My son is done with baseball, forever removing that link from the chain. He’s had close classmates ghost him after leaving the school, damaging those links beyond repair. His best friend from the past two years is transferring to a public school, so they won’t see each other every day, which leaves that important link hanging precariously close to being disconnected.

    But maybe the goal isn’t to build one long, unbroken chain.

    Maybe what matters is the ability to keep adding new links — to connect with the people who come into our lives when they do, to hold onto them for as long as we can, and to be grateful for each link while it’s there.

    My son already knows how to do that. He connects deeply, he feels the hurt when a link breaks, and then he finds a way to add new ones. In his own way, he’s building resilience — and showing me what it looks like to keep building a life, one link at a time.

  • You’ve Got A Friend

    You’ve Got A Friend

    A few weeks ago, we had one of my son’s friends from his new school and his family over for dinner.

    My son goes to a school for unique learners. He started there last year, and we uprooted from the city to move closer to the school. It was a big risk at the time, but it paid off.

    It’s the first time we felt like he was in a place that understood him and was putting in the work to teach him. It’s the first time since our epilepsy journey started that he has been able to attend a full school day. My son is happy, learning, and surrounded by kids who are just like him; each one of those students has unique challenges and reasons for being there.

    My son and his friend often FaceTime after school and play Minecraft. I’ll hear them talking and laughing from the basement, and I’ll exchange greetings with his friend when he hears me checking in. When his friend was out of school for a few days, my son would check in with him to see how he was doing. When his friend came over for dinner, the first thing he said when he got out of the car was that he needed to check on my son to make sure he was okay because my son had a rare daytime seizure the previous day.

    The boys played for hours. They played video games and had Nerf battles in the basement. We heard the same joking and laughing in person that we did when they were chatting on FaceTime. It was a wonderful sound to hear in person.

    While the boys played in the basement, the adults stayed upstairs and talked, mixing time between crafting and food preparation. We had a lot in common. Both families were dealing with a severe medical condition, as well as the complexities that come with it. Both boys struggled in school, and both families struggled to find a place that would work for them. There were doctors’ appointments and extended absences from school that made it hard for them to build and maintain friendships. But both families found a place where we felt the boys could learn and grow and where they found each other and other friends just like them. Both families also have one more year before we go back to the negotiating table in order to continue at the school that has given our kids a chance to be seen and to learn.

    Listening to them share their story also made me furious. Not just because families of children with special needs shouldn’t have to fight so hard or be abused by the system, but also because the way their family was treated was amplified because of their race. The things they were told about their son were shameful and terrible, even more so because the comments came from people who called themselves educators.

    This is the reality for kids who don’t fit into the box. The system, every system, is designed for the majority. It’s more efficient when all the pieces look the same and can be treated the same way. When an “other” shows up, it slows down the machine. The system will try to make the “other” confirm if it can or discard it in order to return to “normal.”

    In some cases, when the “other” proves resistant to being discarded and fights back, the system makes conditions intolerable until the “other” has no choice but to leave. We’ve experienced this ourselves, and we’ve seen it play out too many times with the people around us, especially those on a similar path. It plays out the same way in the bureaucracy of the local school system as it does on the national stage.

    Navigating this world is hard and exhausting. It often feels lonely and isolating. It’s been a while since we talked to someone who understood our experience that deeply. It was cathartic to look across the table and see someone who knew what it was like. As terrible as the experiences have been, it was comforting not to feel alone.

    Playing in the basement, it was also apparent that the boys didn’t feel alone, either.

  • Today Is Not Yesterday

    Today Is Not Yesterday

    I was recently in Colorado and had a chance to catch up with friends that I have known for more than ten years. We knew each other before I was married and before any of us had children. They’re also one of the few people who knew us before epilepsy.

    We reminisced about the days when our lives were simpler and had much less responsibility. Adulting is hard. The weight of trying to focus on a career but still spend time with the kids, friends, and each other gets to be too much. We’re all exhausted and come home and want to do nothing but go to bed early.

    Ten years ago, we thought it would all be possible. Ten years ago, we thought nothing would change. Now, we’re tired and depressed because we couldn’t maintain our lives from the past. So it made sense that we would be nostalgic for the time before we felt like we were failing.

    But we’re not failing. As much as we thought we could, we weren’t supposed to keep things the same. We couldn’t just sprinkle on new stuff like kids or a more senior job. Our lives evolve and become something else. Today is not yesterday. It’s something new.

    Instead of trying to fit my new life into the old one, I’ve tried to figure out what my life should look like now. Instead of focusing on what was important to me then, I’m trying to focus on what is important to me now and build my life around that.

    But it’s hard to let go of the past, especially when there are days when the present seems impossible. Every seizure, every outburst, every time my son can’t remember what just happened…I just want to hop into a time machine and go back to before any of this happened.

    I think that is what my brain is doing every time it compares today to yesterday. It’s trying to bring me back to the past. But it’s wasting energy. It’s swimming against the current instead of letting the current carry me forward. Worse, the past that it is trying to bring me back to isn’t real…it’s a distorted version made better by years of distance.

    It’s not always easy to focus on the present. The present is hard. The present is real. But instead of using my energy to try to make my life what it was, I should be using it to make my life the best that it can be now. Because the present is where my life is. The present is where my family is. The present is where I am needed. The present is where I am supposed to be.

    Nostalgia is a necessary thing, I believe, and a way for all of us to find peace in that which we have accomplished, or even failed to accomplish. At the same time, if nostalgia precipitates actions to return to that fabled, rosy-painted time, particularly in one who believes his life to be a failure, then it is an empty thing, doomed to produce nothing but frustration and an even greater sense of failure. ~R.A. Salvatore

  • The Sleepover

    The Sleepover

    A few weeks ago, my wife and I spent our first night away together since my son was born. Individually, we’ve been away. I’ve gone on work trips, and my wife has gone to visit family. But we’ve never both been gone for the night and let someone else watch our son.

    In some ways, it wasn’t practical. We don’t have family that lives near us, so leaving him at grandma’s house wasn’t an option. But there is also the reality that our son has seizures almost every night. Spending the night isn’t just about giving him a place to sleep. It’s an active task that involves monitoring him and responding to seizures.

    Our son is never alone. Even sleeping in his bed, we have a camera pointing at him that I watch all night long. When he is in his room playing, we keep a cautious ear listening to what is going on. He receives individual attention at school, and his nanny is substituting for us when we aren’t there.

    That level of involvement is not something that transfers well to someone unaccustomed to that level of care. It’s not something that lends itself to people lining up to take on the responsibility. It’s our every day, but it’s not theirs. I can imagine the conversation with the parents would go something like this:

    As you know, our son has epilepsy. And it’s very likely that he’s going to have a seizure really early in the morning. Probably more than one. The seizures are likely going to wake and frighten your child. And you’ll need to help my son reorient to the world as he comes out of it and make sure he doesn’t fall out of the bed or try to walk around and fall down your stairs.

    [silence]

    If the seizure lasts too long, his rescue medicine is in his overnight bag. The good news is that we haven’t had to use it in a while. The bad news is the delivery mechanism.

    [silence]

    Also, you’ll need to make sure he doesn’t eat or drink anything we don’t send with him. He’s on a medical diet and if he eats anything else he could start having seizures.

    [silence]

    Oh, and don’t let him stay up too late. The more tired he is, the more likely his is to have seizures.

    [silence]

    His medicine is also in his bag. Make sure he takes all of his pills because if he misses any…you guessed it, more seizures.

    [silence]

    Other than that and, I guess, his depression and behavioral side effects of his medicine, I think you’re all set. Ok, goodnight!

    [overwhelming silence]

    I couldn’t burden someone with that responsibility because nothing could prepare them in one night for what has taken us years to adapt to. But I would also spend the night worrying and wondering. It wouldn’t have been a good night for anyone involved.

    I really struggle with the idea that no one else can or will want to take care of our son. But at the same time, I find reasons why no one else should. They don’t know my son. We can’t prepare them for what it is like. What if something happened?

    In the end, our nanny provided the perfect opportunity. She has been working with our son for over a year. She’s seen his seizures during his nap, and she’s helped him manage his behavior and emotions. We trust her to keep him safe. When she agreed to an overnight stay, it felt right.

    Even though it was only one night, it opened my eyes to a new possibility. I’m not going to say that I still didn’t worry or wonder. But coming from a place where I didn’t think it would be possible at all, that first night was huge. It may not have addressed all my fears about the future, but it was a good first step.

     

  • The Art Of Disappearing

    The Art Of Disappearing

    I’ve perfected my ability to disappear. Only, it’s not a magic trick. It’s the way I have trained myself over the years to deal with difficult situations.

    I developed this ability at a young age. For most of my childhood, I navigated the world alone. I figured things out by myself. Sometimes, I figured out really hard things and I was rewarded with praise that reinforced my growing belief that this was the way to operate in the world.

    I wasn’t quite a loner. I had friends, but I found comfort in being alone. Friends were for making mischief and playing sports. But when it came to solving problems, I worked alone, whether the problem was a difficult project or the increasingly complex emotions that come with growing up. I solved those, too, internally, in my way, and away from everyone else.

    Again, I was rewarded with harder projects and better opportunities. At the time, I saw my detachment from other people as an asset because it made it easier to shut them out when I faced a problem. But as the matters of the heart got bigger and more complicated, I started to put those matters on a shelf and not deal with them at all. I would find distractions or try to solve other people’s problems so that I didn’t need to face my own. Even then I was rewarded by better opportunities and more people coming to me for help, feeding my ego if not my soul.

    But in the last few years, it became clear that what got me here was not what was going to get me there. Where I wanted to be. Who I wanted to be.

    I had this moment of clarity after taking a leadership class that included a behavioral assessment. When the results showed that I was a thinker, I beamed with pride. It described me perfectly, solving hard problems, concentrating on my thoughts. But then the instructor talked about how thinkers are perceived by the people around them and I felt a wave of reality crash into me.

    The thing about disappearing is that it leaves the people around me alone. It leaves them wondering where I am. It leaves them wondering if they are important to me. It leaves them disconnected in times when being together…being connected…is what is most important.

    Clips from my memories started playing in my head. My wife and my friends told me in their own way that they felt alone or wondered whether they were important to me. Bosses wondered if I cared about the project or the job. And my response to these big questions was to disappear so that I could think and process. I thought about how I would feel if someone did that to me and it made me sad. I thought my wife as we watched our son get poked and prodded and seize and as we listened to doctors tell us more bad news. I thought about how when she turned to me for comfort or connection how I wouldn’t be there because I would be off trying to deal with it by myself. I felt sick.

    What got you here won’t get you there. ~Marshall Goldsmith

    It’s not easy to face the realization that such a core part of who I was had such a negative impact on the people around me. It’s even harder to change more than forty years of programming. But there is no question in my mind that it needs to be done.

    Even with the small progress that I have made, I can see changes in my relationships. I may not be able to stop myself from disappearing, but I feel it happening so I tell the people around me so that they know I am still there. I’m more aware when I am in that place and it’s less comfortable than it was, so I don’t stay there as long. I’m getting braver and facing challenges instead of avoiding them. Most importantly, I’m starting not to do it alone. Because no one can. And no one should.