Hello? Is there anybody out there?
Hello, hello, hello is there anybody in there?
When I was a child I caught a fleeting glimpse, out of the corner of my eye. I turned to look but it was gone. I cannot put my finger on it now, the child is grown, the dream is gone. I, have become comfortably numb. Hmmmmm?
With ALS there is the lurking reality of becoming locked in. To no longer be able to move or communicate in any way, all the while still being very much alive and fully cognizant. Pretty fucking terrifying to consider but an inevitability for anyone staving off the grim reaper. A second and much more common and arguably worse scenario is becoming locked out. This is when a person living with ALS still has the ability to participate in the normal activities that normal people do but they encounter restrictions and obstacles that prevent them from doing so. Locking us out of the things that others take for granted. Ya know?
And before you start to get the wrong idea of where I’m going with this, I’m not here to get on the soapbox about accessible Buildings and equal access to all things. There are a lot of ways for me to be locked out of something. Transportation is a huge problem. If you don’t have a handicapped van you’re just not getting very far in the world these days. Then I need someone who is willing and has the time to drive me which is not always easy. Schedules don’t always match up and neither do interests. Not everyone likes what Scott likes. Weird. I know. Ha ha ha. Hmmmm?
I will get into more details about being locked out of things, but a lot of the barriers that I, specifically, bump up against are mostly accidental or due to the aggressiveness of my approach combined with the size of my 425 pound power wheelchair. I have always been a bull in the China shop and that hasn’t changed. I don’t mean to be the pushy wheelchair guy but I live in a world where I am 3 and a half feet tall and people have their heads up their phones. I’m truly surprised that I have only seriously knee capped one person, and he was just too slow to get out of the way. Oh well. 50 points for me. Ha ha . Now where was i? Oh yes. But this is a different kind of tripping story. Hmmm.
I love music. I suck at playing it, even though I tried. I played saxophone in middle school and banged on mom’s piano but reading sheet music was beyond me and I quit. Years later, I used some of my first bonus check to buy an electric guitar. I understood tablature and actually wasn’t too bad at one point. It sounded like music anyway. Beyond that, I love listening to music and over the years my deep appreciation for quality and deeply intricate music has been broad and experimental. If it draws me in and can tell a story, I’m a fan. Pink Floyd is one of the most influential bands of the last 50 years and one of my all time favorites. A lot of my misspent youth, hard earned Pizza Hut wages and a few brain cells were spent going to see all of the great artists of the time. My first live concert was seeing Ricky Nelson in Flint Michigan. Since then I have seen, in no particular order, the Beach Boys, Loudness, Poison, Mötley Crue, Peter Frampton, Stevie Nicks, Night Ranger, Kiss, Accept, Iron Maiden, Metallica 4 times, AC/DC, Yngvey Malmstein, Queensryche twice, Crosby Stills and Nash, Buffalo Springfield, Pink Floyd, Monsters of Rock, Van Halen, Faith No More, Pantera, Journey twice, Duran Duran, Kenny Chesney, Zac Brown, Dio twice, Santana, Dire Straits, Rush, Bon Jovi, Strychnine, Strange Weather, Liquid Courage, Peter Gabriel, Grateful Dead, Saxon, Black Eyed Peas, Florence and the Machine, Stone Temple Pilots, Toby Keith, Sammy Hagar 8 times, Blind Boys of Alabama, Big Head Todd and the Monsters, R.E.M., Eagles, Paul Simon, Imagine Dragons, The Killers, Billy Idol, Scorpions, and Ozzy Osborne. Whew! That’s a lot and I’m sure that I forgot a few. I’ve also enjoyed countless musicals and theater productions. I’ve been pretty fortunate to say the least. The top concerts were Peter Gabriel, Rush, Metallica opening for Ozzy, and Pink Floyd. I was so excited about seeing Pink Floyd and have such respect for their musicianship that I went to the show sober. Which, at the time, was saying something. Ya know? Don’t judge. Hmmm?
Well, last Tuesday I went to see Brit Floyd at the Tulsa Theater. The self proclaimed greatest cover band of all time, and they didn’t disappoint one bit. I bought 4 tickets months ago and I have been counting down the days. I even found 4 handicap accessible seats, which is impossible these days and another locked out discussion for my soapbox some other day. I invited Erica and our daughters to come along and I was pretty excited to share something that I loved with them. A few days before the show and I started to get locked out. Now, before I go any further into this story, I don’t want anyone to feel bad for me or think that I’m disappointed in anyone. I push myself really, really hard and that means that I’m pushing those around me just as hard and probably harder. When they push back I know it’s not personal or even easy, but it doesn’t stop me either, unless it does. Ha ha.
So after another long weekend of showing ALS who’s boss, Erica decided that she didn’t want to go to the concert. I wasn’t surprised to be honest, she’s a trooper but Pink Floyd can be an acquired taste. I can admit that. I also know that she didn’t want to disappoint me, which is one more reason I love her, and I accepted her decision without missing a beat. Besides, she’s done every ridiculous thing I’ve come up with. I couldn’t be upset. I quickly pivoted to my brother who was a long shot and he too graciously declined and I was stuck. Locked out. Damn it.
The problem with ALS isn’t necessarily me per se but all the moving parts. My van has a ramp, automatic door, ez lock and self lowering hydraulics. Not particularly complicated but it’s a lot. Especially if you’re my friend and you don’t want to kill me. I also have a 400 pound wheelchair that stops just short of being an exoskeleton. It tilts, leans, elevates, stands and reclines. It’s definitely more complex than the van. Then there is a catheter, feeding tube, computerized speech device, I’m very high maintenance on a good day. But I also paid for the tickets, so I had that going for me. I just needed to find a highly competent person that liked acid rock. How difficult could it be? Hmmm?
Collin’s wife is friends with Erica and they went to Big head Todd and the Monsters with us so he was next on my list. If he didn’t say yes, then the evening was probably going to be a bust and I would try selling the tickets but after a quick text Collin was signed up, and this is where the chaos began. We were loaded in the van after my brother gave everyone a Ted talk about how the van operates and we were off. Everywhere in Tulsa is 20 minutes away so we had time to feed the girls and find parking. When we entered the theater they had one of those little wheelchair elevators that goes down 3 steps and never works quite right. Of course everyone stares at me, waiting for instructions like I’m just supposed to know what to do because I’m the one in a wheelchair. Ok, sure. So I drive on board where it immediately groans under the weight. It’s probably from 1989 but we’re here to party! Right? So I pull in and the door won’t close because my chair is too long. It’s an easy fix, just push the button to adjust the feet and the other to sit me up. Easy except that Collin and the girls don’t know how to do it and it takes a while to type the instructions with my eyes while they stand there looking at me helplessly. I knew there was another entrance so with a look of frustration on my face I backed out of the hell o vator and took off, hoping everyone would follow me. We strolled right in, breezed through security and the girls hit the restroom while I pulled up the tickets on my iPad, and then I realized that something was terribly wrong. There was no humming vibration of music. No dirty hippies buying t-shirts, no lines for $10 beers and no smell of a concert in the air. Just then I saw the posters on the wall and I felt the embarrassment rising up into my face. Wrong fucking theater Scott! We were at the lion king. Yeesh! I stared at them, they stared at me and I had to start typing out my mistake. Fortunately, Collin is a pretty laid back guy and he knew what we needed to do. He went to get the van and pull it around the front and we went to wait. It was now 7:55. No problem. I’ve been late before. What could go wrong? Right? Hmmm?
This is a good time to let you know that my right hand and arm strength has weakened considerably since our last conversation. I actually now have the technology to drive my wheelchair with my eyes but I have yet to fully embrace it. Like everything else in ALS land, accepting something that helps is replacing something that has died and I’m not ready to give up my last hand. I require more and more energy to push the joystick. I have the speed turned up so I can use less effort but it’s also dangerous because if someone else bumps it, zoom I go. Sometimes in circles but always in the wrong direction. Getting back into the van was tough and all anyone could do is watch. I had literally put myself in this situation and I had to grind it out. I summoned every ounce of strength to make my arm move that joystick. Eventually I heard the click of the wheelchair hitting the easy lock receiver and we were on our way. It was now 8:10 but we only had to go a few blocks away. Ha ha ha.
We pulled up to the Tulsa theater and we were happy to see Brit Floyd on the big sign. It just so happened that there was an empty handicap parking spot right in front and with little issue we were inside and the place was rocking. They scanned the tickets, opened the door and in we went. We made it about 15 feet and I stopped. It was so dark and so loud that it took me a minute to adjust. Also, everyone was behind me and I was on a slope. Where are the seats? Where are we supposed to go? Eventually Collin appeared over my shoulder and I started typing. My eye tracking computer works exceptionally well in the dark and I hoped that he would figure things out. Ya know? In the meantime I just sat and watched the show, letting the music wash my troubles away, and then my chair moved. I can’t turn my chair off by myself and the angle of the slope was working against my tired arm, slowly pulling me across the aisle. Going forward led me deeper into the crowd and backing up was going to take strength and faith and I was burning through both. I wondered what was going to happen if I became stuck in the aisle? Then Collin’s head reappeared and he told me to back up. Sweet! I backed into the lobby and Collin said follow that guy. Again, I took the lead, following a guy dressed in black, down a dark ramp and hoped we were heading to the right place, but I knew we weren’t. When I bought the tickets online there was a seat map. Our seats were further back but this guy was marching forward so I went for it. Honestly, strange things happen when you’re in a wheelchair and most of them are good. I was so over committed at that moment that it didn’t matter. The concert was in full swing and I wanted it to happen, whatever was happening that is. Ha ha. The guy stops and points and Collin yells that this is the spot for us and they are finding chairs for them, or something like that. I think that’s what he said. Who knows really? What I did know is that I was now just 20 rows from the front, almost in the center, and I wasn’t able to argue if I had a voice to use. I slowly worked my way to my spot, praying that all the toes were out of the way and I parked. Woohoo! The girls were sitting in the aisle while Collin disappeared. I tried to make eye contact with my daughter but it was useless. Chaos was in full swing and I surrendered to the moment. As much as I wanted to sit together, do the dad thing, do the right things, I was stuck and I couldn’t have been happier. The guitar screamed and the drums beating pushed against my already weak diaphragm, taking my breath away. I knew my eyes were wide open. I looked around and everyone looked the same, mouth open, eyes open, taking it all in. Sonic Heaven. I remembered that I could text. A quick flurry of messages and Collin and the girls were gone before I could protest. I’m not supposed to be alone. I went to text again and, and, nothing. In the haste and confusion of leaving the house I now realized I had forgotten to bring my phone. Oops.I must have been on my daughters hot spot and that connection was now severed. I was alone. Uh oh. Hmmmm.
I don’t even know the last time I was truly alone. I’m by myself fairly often but never alone. Someone is always within earshot. I have text, phone, and alarms at all times, but not now. No one was watching me If I started choking. No eye contact could be made with anyone in a panic. If I yelled no one would hear me and if they did it wouldn’t mean anything. My wheelchair was off and even if I managed to turn it on my hand was off the joystick. I was marooned in a sea of people and for a few moments I was actually scared. Then I let it all go. All of it. The very worst thing that could possibly happen is that I could die, and I was just fine with that. I felt my body relax and I yelled so loud and nobody looked. The music, the lighting and the lyrics were spectacular and familiar. I knew it all by heart, I’ve heard and sung along 1000 times. This was my happy place and if I died here it would just be a fitting punchline to my eulogy. I hoped everyone else was enjoying the moment as much as I was. Ya know. Of course you do! Hmmmm?
Ok. I’d like to take a moment and take my first ever commercial break. I spend a lot of time and money researching and trying to find the little things that make ALS easier and then I share them with my friends. I have yet to be paid for any of it and that’s never really been the reason why I do it. I’m all about keeping my quality of life consistently high and making things simple and easy for my family and caregivers. Everything else is a bonus. Ya know?
Recently I’ve been searching for a urine bag cover. Sexy, I know. Oklahoma summer is hot and shorts are required but since I’m adopting a catheter into my routine I’ve been wearing pants to cover the bag. I know I’m cavalier and I truly don’t care what anyone thinks but I’m not the only person involved. I also want to have a little style and really, no one wants to see a bag full of urine sloshing around while they’re trying to enjoy life. Right? Cavalier but never rude and trashy. Hmmm?
So I found this website, Styledwell dot com and they only make two products; a urinary leg bag cover and a larger bag cover designed to hang from your wheelchair or whatever. Both are pretty clever designs and extremely well made and high quality. The larger bag is now a permanent fixture on my chair. It’s black canvas and blends in and disappears and the capacity is big enough to get through a three hour Pink Floyd cover band, if you know what I mean. Ha ha ha.
The price is $54.95 and it’s made in the USA. I will provide a link on my website so you can easily find it and order one. Mary is the owner and she’s the kind of high quality person I want to do business with. Check out her site. You won’t be disappointed.
Styledwell dot com
Ok. Thanks for listening to my commercial. Now back to the show! Ya know!
I’ve always thought that being at a concert was similar to being in a restaurant. An entire group of people are working together, all playing different notes , different volumes but all following the same beat. Their common goal being to bring 100 different notes together to create something entirely new and unique that can only be consumed right then and there. Something that satiates and stirs the appetite at the same time. An experience simultaneously public and extremely personal and private. Music and food evokes prior memories and emotions while making new ones. If done correctly and with love, music and food both touch the soul. You must know this to be true. It’s indisputable. Yah, you know. Hmmm?
Being a general manager is like conducting a band. Of course some might argue that it’s more akin to being a general on a battlefield, ha ha ha. And that is also an accurate analogy but it’s an oversimplification. There is so much art and beauty that comes out of a restaurant, it’s just that most people don’t know how to appreciate it. Much like music and I suppose I could go in a circle for hours with that argument, but I won’t. You get the idea. Hmmm.
At intermission the lights came up and I got a good look around. When did everyone get so old? Ha! Says the guy on life support. I’m sure everyone was wondering when Steve Hawking jr. showed up and where was my crew? Collin showed up with someone from the theater who could make decisions and they started strategizing. I was in the wrong section and supposed to be in the back. Well, duh! I’d been trying to say that but when you can’t talk it’s difficult to be heard. After taking a moment to survey the whole situation it was decided that I should stay right where I was and Collin was going to squeeze in. The girls had seats in the back somewhere and I’m sure they were just fine hanging out together and not with the old farts. Heh, me too! Ha ha. The house lights came down and the guys next to me immediately fired up the doobage. Can you believe it? Didn’t they see the no smoking signs? Some people’s kids! Fortunately for them I have a high tolerance for shenanigans and I let them be. I wonder if Collin noticed? Heh heh. Hmmm?
The show immediately kicked into high gear, cough cough cough, and I once again settled back and let myself drift away on the music. I looked over at Collin and he looked just like everyone else. Eyes wide, mouth open, just taking it in. I yelled, trying to get his attention but he didn’t move. I was back on my island. Happy little Scott. Lost in a crowd. Maybe a little contact high. Just perfect. Just a perfect moment that I had fought for. I Demanded of myself and others to make it happen. But why? Why do I go to such great lengths and gyrations to do stuff like this? Good question. I’m glad you asked. Ya know?
Life is motion. If you stop moving, stop learning or seeking new experiences, it’s over. Isn’t it? Hmmm? It certainly seems that way to me. I know that part of it for me is definitely ego and to see what I can get away with. Not trying to take advantage but to see if the limits of ALS, and the limits of my wheelchair are real or myth. For most of my life I’ve been told that I need to know my limits. Frequently reminded That everyone has limits and I am no exception. Ok. I’ll buy that but when I asked this question the sky just opened up for me. I asked; ok, so what are my limits? And do you know what they said? The collective they? They said; well Scott, it’s different for everyone and you’ll have to find yours over time. Shut the door! Shut. The. Door. This was probably the best and the worst information I’ve ever received and it profoundly influenced the rest of my life. Everyone has limitations, but mine are unique to me and I get to define them. To me this means everyone has limitations and they want to impose their limits on others. and I have limits that only I can define, if I have the courage to do so. Get it? Got it! Now get outta my way my friend, because I’m coming through! Ya know? I’ve been around long enough to know that some people are not aware of the second part of that little nugget of truth. Or maybe they learned it too late. It makes me sad to think about it and it’s why I wanted to tell this story. To give my fellow pALS permission to push their way a little closer to the stage. It’s ok. I’ll go with you if you need a buddy. Hmmm?
As the show started to wind up to the crescendo I felt a hand on my shoulder. The girls had worked their way through the crowd and were right behind me. Nobody cared of course. ALS has its perks and this was one of those times. We got to watch and listen together to the final few tunes, including my favorite, Comfortably Numb. Yes, it’s about drugs, but not really. Music is whatever you want it to be and I’ve been comfortably numb in the past. It’s a difficult place to escape from for many people. It’s sad but it’s real.
I’m not there now and I don’t plan to be back anytime soon. Once I find the limits to ALS, I’ll be sure to let you know. Or maybe you’ll be informed that I finally found them. Ya know? But until then, it’s only a mild case of ALS. Damn right it is!
