WARNING: – THIS IS A LONGISH PIECE AND HAS VIRTUALLY NOTHING TO DO WITH BICYCLES.
Social media is a vexing conundrum for me. It can be a hologram of real life and a distraction from the real goings-on. There are also moments when it is a lifeline and connection to people I love, like and know, many of whom I otherwise get to see rarely or never. Then there are times when Facebook and its ilk are an annoyance, a fake-world, an echo-chamber, and a joyless escape that fails to satisfy. Typically, it is all of this at once, both good and bad and my reception to it is colored by the mood I am in as much as the posts I see. Like others, I have considered tossing it aside, removing my accounts and dropping out. I certainly have friends that have done this and I see the appeal, but there are other days where the time I spend on Facebook, or Pinterest or whatever offers a valuable substitute social interaction when my life squeezes out real interaction.
In many ways, our family is no different than anyone. My wife Chaney and I have very full schedules. We have two children and demanding full-time jobs like so many others. I do my best to make time for the bike tours and this website, but they feel the impact of a demanding schedule, and I write less and do fewer tours as a result. Of course we have normal lives to live with typical responsibilities, interests to pursue and time we want together and like everyone, we get busy. We are also the only non-school caregivers for our son Jackson who has a wide variety of special needs and complex medical conditions. Caring for Jackson at home is integral to our being a family. We would not want it any other way, still, it is very hard. Being a caregiver for a loved one offers great rewards but it can be a very isolating and lonely experience.
I am not trying to illicit sympathy, but I want to describe our realty, so I will try to offer up some ways that this life of ours works and feels with specifics. If it comes off as attention seeking, I apologize.
Jackson has Cerebral Palsy. More specifically he has chronic encephalopathy, spastic quadriplegia, seizure disorder, dysautonomia, chronic lung disease, scoliosis, CVI and osteopenia and has intellectual disabilities. He is tube fed, non-verbal, non-ambulatory, on dozens of medications daily, is on oxygen or bi-pap 24/7, requires various therapies daily, lies down or is in a specialized wheelchair at all times and is 100% dependent on others for every aspect of his life. He has brittle bones and is prone to pneumonias and aspirations and has had several multi-week hospitalizations over the past two years. As challenging as it is to care for a young man with those needs, I am always aware of how much harder life is for him than for me, how brave he is, and how hard he tries. He is the best boy and he has the best attitude. Despite of all of his hardships and challenges he is a happy, wonderful, social kid who loves super heroes and our family and our cats and his music and singing and being read to and playing and so many things. We love him so much, and by comparison of what life is like for him, it feels wrong to complain.
But our feelings are our feelings and we are allowed to feel tired and weary or sad and beaten down when that is how we feel. We can never leave town. We can’t fly in a plane, or even take longish trips in a car. We can’t find hotels that could accommodate our needs if we did leave, and traveling with all of the equipment he needs for breathing and therapies is not feasible. We can’t take vacations or visit family, even separately, as the demands of jobs and caregiving are such that one of us can’t leave the other to do it all. Since his injury over a decade ago, we have been to the Wisconsin Dells two times, because there is a hotel there that was able to accommodate our unique requirements. This was before his health worsened and now we don’t even go out as a family anymore to have an occasional meal or get out of the house or go to a park or a movie or a zoo or in any way break up our routine because it is just too hard for him. We always ask him, and sometimes he wants to try, but most often he doesn’t or can’t and every time we do go out to do something, anything, he really has a hard time, so we basically don’t typically try these things anymore. We spend time together at home, or one of us will stay home with Jackson and the other will go out with Zoe and try to give her some time to be a normal kid and bond with us outside of the cocoon. They both have school, and we have work and life goes on for us as it does for everyone.
At the end of last year, our friend, babysitter and respite provider Kerry, moved to Michigan. She has sat and cared for Jackson and eventually also Zoe, since Jackson was a little boy. With her help, we were able to go out on an occasional date and have one day a week without having to be sure to be home by 3 PM to bring Jackson in from his Medivan after school. Since her move, she has even come back to Chicago on a couple of occasions to give us a break but we have been unable to find anyone to replace her. Due to several of the recent hospitalization experiences, we no longer have after-school care for Jackson either. In the last two years, what was a challenging and demanding schedule turned into a devastating, brutal one. We are just now finally getting some traction on finding some after-school nursing and it really can not come soon enough.
There have been other sacrifices made for lack of time and opportunity over the years, that just happened…profound changes in some cases that affected our lives so completely. They happen one at a time, but they add up, and soon when I look back I see a whole person I have left behind. I don’t play in bands anymore, or really play music at all. I can never get out on group rides anymore, or even solo rides most of the time, and my pant size sure reflects this. I have had to cut back on my schedule for work and every other scheduled thing we do. My professional career is completely scheduled to within a second of its life that it leaves me scrambling to organize and squeeze even one more showing into a week. Virtually every time I am invited to do a ride, a barbecue, a housewarming party, a dinner, a show, an anything, I have to decline. What I find even worse than not being able to go to these things is when you gradually stop even getting asked because your friends know you will say no.
One of the things that is especially trying is having to be selective about which life experiences Zoe can participate in. Organizing simple things like play-dates, extra-curricular activities, team sports, piano lessons and all the normal things we want to do for our kids has to be considered with the ability of one of us always being with Jackson and our respective work schedules. Balancing family life and work and caregiver scheduling and so many other things can be so encompassing that often for weeks or months at a time, the only people I regularly interact with are my family, those I work with, the riders I see on the tours or the occasional ride with my buddies when our availability coincides.
Interacting with my friends and non-immediate family online may be a surrogate social experience, but at least it’s something.
I want to be able to bike more, but I understand it is what it is. I want to be able to play music again, but I understand it is what it is. I want to be able to be the me I was before, but Jackson will never be the boy he was before, and therefore all of us, we are all different by need. We can understand it, but still be undone by it.
Since the alternatives are worse, our family has adapted and we are able to move forward and experience great and wonderful things together, even if it feels so hard so much of the time. Superficial as they can be social networks, internet enabled communication and long-distance virtual friendships are vital support for our lives. We enjoy experiencing our friend’s lives vicariously and seeing them have children and seeing their children grow up and all of the nice things that this remarkable age can provide. We appreciate being able to give solace to others in their times of need or share the experience we are going through with our family, even the tough times when Jackson gets hospitalized. We love seeing and reading about all of your vacations, the old faces, the TBTs, the stickers, and emojis and the valuable connections between the time wasters. Through these online communities and posts and shares from friends I get to read great articles and books and hear wonderful music and see movies and videos and memes and pictures and links and all myriad of distracting and engaging material that I would never be exposed to were it not for the book of faces.
If through mood or exhaustion or endless campaigning or combination this global gateway feels less that way at times and more overwhelmed with negativity, it can be very depressing and further isolating. The election cycle has gone on forever and even as I engage with others, I am exhausted by the ubiquity of the discussion. As much as I decry the echo-chamber effect of Facebook, the pervasive identity of everyone can seem even worse, when confronted with a discovered sentiment of a friend, family member or acquaintance that I disagree with or can’t relate to or worse, find hateful. When the tone gets too dour, I feel disinclined to post, or read or share or experience life through this virtual connection. Before long, it gets even lonelier, so I come back. Even the pattern left me spent after a while.
Last year I started thinking about different ways to use Facebook. I considered the aspects of my time on it that I liked and times I didn’t. I also thought about things in my life that I missed and didn’t do anymore and were otherwise left behind, of which a big casualty was music. I still listen to music, but much less actively for so many years now. Because of our home-life, I really can’t be in a band that tours or has ambition to do great things, and it is hard to find good players without aspirations. I have no more energy or tolerance left in my bones for all the things that go with being in a band beyond just writing and playing songs. I don’t even have a drum kit set up at the home and I haven’t strummed a guitar or bass in years. The only playing I do at all these days is while helping my daughter Zoe practice the piano.
Beyond playing, any listening I was doing was very passive and in the background of what else I was doing. I no longer was able to, or inclined to take out an album, put it on the turn table and relax to music, read liner notes, close my eyes and absorb the songs, I just put on a Pandora station to accompany the tasks at hands. I found it tough to find new music because even that is a more active pursuit than I could commit to. This is a far cry from how integral music was to my life for so long. If I wasn’t playing or writing music, I was listening to it, writing about it, reviewing it, collecting it, buying it, releasing it, producing it, recording it, mixing it, selling it or distributing it. Now, it was fodder in between NPR and Bulls games.
All of this lead me to a project that I hoped could reinvigorate my love of music, use new mediums like Facebook, Pinterest, Google and YouTube, and use those things in a way that I found inspiring and positive and hopeful to counter the times it didn’t seem like that was the prevailing trend. The project was as follows.
Every day I would post a song on Facebook. Usually it was a YouTube clip, either still image and audio, but just as often video, and sometimes it was Soundcloud or a different video source. Each song would be one that I had at one time or another considered a meaningful or delightful or inspirational song. Each song would be one that still pleased me today, either because it was so great or because the memories of the time in my life when it was fresh to me were so sweet. Often enough, it was both. I tried not to repeat artists, but made exceptions for birthdays, when a musician passed, or if Jackson was in the hospital, in which case I would play from his favorite songs.
I like a wide variety of music. I own thousands of albums and appreciate and listen to punk, classical, folk, metal, bluegrass, country, pop, R&B, classic rock, prog rock, celtic, reggae, noise, rap, ska, hardcore, postpunk, blues, jazz, music from all over the world, and nearly every variation of these styles is fair game.
Each month I would share the songs for that month as a YouTube playlist and a Pinterest board, which had the added benefit of letting me look through so many fantastic pictures of the artists that formed my musical interests and influences. Sometimes the perfect song was obvious, and sometimes it was very difficult to pick one song from artists with such tremendous bodies of work. In many cases, I was reliving these songs that I hadn’t heard in decades, and the memories they triggered were as pleasing as the trusty chords and beats I heard. Even better, people who were associated with those memories would comment on particular songs, enhancing the memory and bringing it back to present. Being able to reminisce with friends I shared these songs with was one of many unexpected pleasures this project gave me.
The project coincided with the unearthing of tapes, 7″s, LPs and CDs of bands I was in. These documents of the evolution of my playing and taste and rising and falling talent and sophistication were an even bigger reward. I had not listened to much of these things in decades and reconnecting with the people I made them with on Facebook was a particularly great result of this endeavor.
I really liked doing this. It reconnected me with music. It had me doing things I liked with Facebook and Pinterest and kept me searching YouTube for great songs and artists and pics of them on Google so I found cool ways these tools. I had great interactions with people about the songs and the times of the songs. By the end, there was a panic trying to get all the most important and influential and forgotten artists jammed in before the year was up. I ended up adding a day accidentally, but no regrets with that or any of the selections.
Here are the YouTube Playlists and Pinterest Boards by Month starting with April 2015 and ending with April 2016. Pinterest boards all link to the video as the Facebook posts did. YouTube playlists all begin from the first song of the month, but you can use the pull down menu on the left of each YouTube frame to scroll through the songs and play particular tracks on each playlist. You can play it on this site or in YouTube and you can share the links if you so desire.
Thanks for taking the time to read and if you take the time to check any of these out, thanks for that too. Much of it may not be your cup of tea, but you might also find something that becomes a favorite and if you’re lucky, a favorite memory too.
A Year in the Musical Life