It took me a while to fully understand the depth of that quote. Depending on who you ask this quote is attributed to either Buckaroo Bonzai or Confucius but I’m going with Confucius because he has a goatee. Hahaha. As many of you know, I like to travel as much as possible. It all started when I was running away from my problems, which I was pretty good at doing. But something happened when I arrived at my destination. First, I was super excited to be in a new place where nobody knew me and I could start over fresh and new. It’s very liberating. However, as time went by my old problems and habits would start to emerge even though I left them behind. Hmmm?
This is what happens when you’re young and stupid. Also, I was too young and stupid to actually realize that I was young and stupid so I just kinda went through life banging my head against reality for a few years. I was also going through a phase of ignoring good advice. I wasn’t trying to be difficult but somewhere I had lost my ability to trust people. It was a heck of a lot easier and less frustrating to forge ahead by myself rather than talking it through with others. I’m sure I suffered unnecessarily at times but I got to learn a lot about myself. In hindsight, I probably saved my life going this route. Ya know? Hmmmmm?
The furthest I ever managed to get away from everything was right around my 21st birthday. I was a rough back working for a gold mine operation in Hawthorn Nevada. I spent most of my time bagging samples from the drill rig and killing scorpions and rattlesnakes. It was hot and quiet and I loved it. They also paid well. Sometimes I would be given a map and coordinates and had to stake out locations for future pad locations. I would drive East out into the great Nevada basin sometimes 50 miles out. I would have a radio, bottle of water, map, compass, spray paint and a pistol and I would start walking and marking up the area. There was nothing out there for miles. Just me and God. I would watch herds of mustangs grazing but not much else. Hmmmmm. Being this alone and isolated isn’t for everyone but it was my therapy. As I paced I thought a lot about myself. No matter where you go, there you are and here I was. Miles and miles from anything resembling humanity and my problems, my vices and bad decisions, it was all right there with me. This was one of my adult ah-ha moments. One of those fleeting glimpses of unexpected understanding. No matter where you go, there you are. Hmmmm? Hmmmmm?
I sat down that day and had lunch under the only tree around. There I was. There I was. It was then that I realized I had been trying to fix and solve problems that were out there. When in fact all of those problems were inside me and my head. Well damn. That sure changed things. I’m pretty sure I gave myself the rest of the afternoon off and sat pondering and thinking about my new paradigm. Ya know? Hmmmm?
Now I travel and wander with purpose. I’m no longer looking for me. I’m certainly not claiming that I know myself but I have settled into my own as well as anyone could and now I was back in Tahoe, my home, one year after I thought I had left it behind forever. As we crested over Spooner summit and headed downhill I sat back and watched the girls reactions as the scenery began to unfold. Endless forests open up to a beautiful big blue lake ringed by snowy mountains. It’s awe inspiring and a view you’ll never forget. Watching Erica and Vanessa immediately fall in love with Lake Tahoe was so fun and we were just getting a first look. Woohoo!
We arrived at Edgewood resort and checked in. Everyone was tired from the adrenaline of traveling with me but we were only in town for three nights so I was ready to go. The sun was already setting behind the Sierra and I knew the colors would be incredible. I also knew that we all needed an Irish coffee to reinvigorate us. We hadn’t been there for 30 minutes when I heard my favorite words, put their drinks on my tab! Thanks again JT! It was great to see you and we appreciate the hospitality. We ventured out into the cold and the sky was every shade of red, orange and gold. Just beautiful. Nature is truly something else. Ya know. Yeah you do. Hmmmm.
That evening I hosted a dinner with some friends and got the weekend rolling. Restaurants are my happy place even though I don’t eat much anymore. And when I do eat it’s not pretty. Food will randomly fall out of my mouth or run down my chin. I can’t chew with my mouth closed and sometimes I choke. I am a little self conscious about my display but not enough to stop me. What am I supposed to do? Just stay home and not offend anyone? Hahaha, nope. I just don’t care what others think. Simple as that. Anyway, I was surrounded by love and so excited to introduce Erica and Vanessa to my people and my people to them. I couldn’t have been happier right then. Damn near perfect.
The evening ended reasonably early and we were able to get a good nights sleep and ready for a long day. After a lazy morning we boarded the MS Dixie paddle wheeler for a 3 hour tour. A 400lb wheelchair makes a little noise on a wooden pier and the gangplank was a little steep. I needed a push to make it over the top but we were boarded on an empty boat and it was a beautiful day. I’ve always loved the water in any form. It calms and soothes me in ways I can’t explain. Again I got to kick back while enjoying my guests oh and ah about the scenery. As we entered Emerald Bay I went out on the bow to better see the rock walls and Fanette island. Jennifer’s ashes are there, part of the water, and my emotions began to bubble up and out. With ALS I can’t explain how I’m feeling. Both happy and sad. So I just embraced the moment and sobbed for the past. Ya know? Hmmmmm?
They also say that you can never go home. That one I understand. I’ve tried. For as many times as I’ve run away I’ve also tried returning home. Seeing the house I grew up in or my grandparents house. Maybe the old high school or the town I ran around in. It all changes when you leave. It keeps moving forward without me. Whatever I thought I was looking for, whatever I thought I had left behind, it wasn’t there anymore. Ha! Is that a paradox? No matter where you go there you are. And, you can never go home again. Maybe? I was very happy to be back in Tahoe but two things had changed. Everything and me. I was now a tourist in my own home. Very weird but I digress. Hmmmmm.
Actually I don’t digress. This trip, like every other one before, was nothing more than escape. Escaping from ALS and all the shit that comes with it. Distraction is probably a better choice of words. And I highly recommend distracting yourself from ALS because it’s the absolute worst fucking disease on the planet. It horrifies me and scares me like nothing else I have experienced. I go to great lengths to settle my fears and control my emotions but sometimes they overwhelm me and I guess this is one of those times. So off topic we go. Wheeeee!
I’ve learned that the secret to not going completely batshit crazy is to stay in the moment. Ha! Easy to say but a little difficult to practice. Slipping into thoughts of the past is easy to do but tends to lead to sadness and melancholy. This is a quick path to depression for me. My sad times are pretty rough to remember and my good times, well, my good times were so good that the thought of my best times being behind me is equally painful and depressing, even if it’s not true. Ya know? Hmmmmm?
Thinking about the future is even trickier. I have a lot of hope that I might catch a break. The longer I live the more time there is for new treatments to come my way, maybe. Prayers are a powerful force. Miracles happen. Hope requires thinking about the future. Being alive requires a little planning and organization so I’m ready for when tomorrow comes. The problem here is that ALS and the reality of the situation is also in the future and separating good future thoughts from bad ones is not an easy task. The future of ALS is suffering and pain. Paralyzed and bed bound. Probably needing a tracheotomy so I can continue to breathe and live. Being fully aware and cognizant of my pending death. Yup. Pretty scary stuff and a recipe for severe anxiety and panic attacks. So far I’ve been able to avoid most of the severe ups and downs but I can feel the constant pulling from both directions. It can be exhausting. Ya know? No. You don’t know. Not really and that’s a good thing. I’m glad you don’t understand what I’m going through. I hope you never have to go through this. Hmmmmm.
So how do I stay in the moment? Great question thank you very much! First, I lay down most of the load at the feet of God. I wasn’t always good at this but ALS forced the issue. I still throw rocks at God but I let him carry the load. That probably seems a little ungrateful and you’re right, but God can handle it. For the times when even that doesn’t work I have spent a good deal of time practicing meditation and prayer. In my worst moments I have to ground myself right where I am. I’m ok. I’m ok and in my wheelchair. I’m ok and in my wheelchair in my bedroom. I’m ok and in my wheelchair, in my bedroom, in my house. As I continue this listing process I control my breathing and let myself relax and try to get back into the moment. Right? No matter where you go, there you are. As my thoughts and feelings run wild here I am just hunky dory in my chair. Sure sure. Well, it works for me most of the time and I can now pull myself back from the edge pretty quickly if I want to…
Yes, sometimes I let myself go over the edge but I do it at a time of my choosing. It’s like emotional exercise. If I let myself experience my emotional highs and lows in a private environment then maybe I’ll reduce the odds of having them unload in public. Maybe. Hahaha. Right. The vast majority of my meditation practice is spent on simply accepting my life as it is and staying connected to the present moment. Sometimes I’m just a curious observer of myself and my surroundings, waiting to see what might happen next. It’s not a bad way to be but it’s definitely a departure from who I once was. My days of being a master of destiny are mostly behind me and I’ve gone a long way to accept that, to just let it all go. Accepting the new reality that God has set before me with grace and gratitude is the only way because fighting and struggling against ALS just doesn’t work. It’s too much. Ya know? Maybe? I don’t.
It was so damn good to see my friends though. I have the best group of friends, family and people around me and supporting me that I get overwhelmed and embarrassed at times. It’s such an outpouring of genuine love that I wish you could see it and be there with me. More than anything else that’s why I made the effort to go back, to see my people. To let them know that I’m ok and for Erica to be able to learn more about me through them. I needed to create that bridge for myself and my friends didn’t disappoint one bit. I got to forget about ALS for a few days and feel like a normal person. I didn’t have to be guarded or self conscious or worry about my environment. It was so amazing. Damn I had a good time. Hmmm.
I suppose I could list out all of the cool things we did but I’m not a travel agent or trying to impress anyone. I want my fellow pALS to be inspired and have the confidence to make their own trip. I will share this though, the places I visited and the things that I did were all very accommodating and fun and the people were very friendly and helpful. Of course there were some moments of frustration and disappointment but the good times were abundant compared with the bad times. The bad times we experienced we just adapted or ignored them or patiently outlasted them. Nothing is ever easy with ALS but we do them anyway. Just pushing through the hard part has always been my approach. Head down, shoulder to the load and making a path. Unapologetic. Ya know?
The trip back was a little bit hectic but we were tired from three days of vacation Scott Craig style. We had to change my clothes in fire department parking lots a few times. I didn’t leave enough time between connecting flights so we had to check the power chair all the way through and use a manual wheelchair to get to our next gate in Salt Lake City. That sucked. Very uncomfortable and no Tobii. I just practiced going to my happy place and was patient because I don’t have a choice anyway. It wasn’t that bad overall. However we did have a little fun going through TSA in Reno. Again I was all ready with my precheck and it was useless. My chair got swabbed by the bomb squad and I heard the words. Excuse me sir, is this your bag? Seriously dude? I couldn’t catch a break with these guys. They began taking my backpack apart because I had a bag of liquid food. I turned up the volume on my Tobii and explained that I have a feeding tube and it’s medically necessary. Three agents kept turning the pouch over and over trying to figure out what to do so I typed in my computer and hit send. It tastes like chicken, boomed from my speakers. That got their attention and the supervisor finally cracked a smile and was shaking his head as he grinned at me. That’s right my brother there are big problems in the world and I’m not one of them. We finally got waived through and on our way. Hahaha.
As I fumble with the ongoing challenge of ALS I continually ask myself one question over and over. Fact or fear? Are my choices and decisions based on facts or are they based on fear? More times than I can count the answer is fear. And fear is a good thing. It makes me pay attention. And yes, ALS and everything about it scares me. When I know that I’m operating under fear I then can decide to search for more facts to help me understand what I’m getting myself into or I can walk away. This isn’t to say that I haven’t made poor decisions based on facts but that’s a completely different discussion for a different day. Hahaha. Ya know? Hmmmmm?
Since my ALS diagnosis in 2019 I have traveled to England, France and Italy. Also Florida twice, Michigan, Chicago and Hawaii. I also have traveled extensively by van and of course by Corvette. I’ve pooped my pants. Peed on myself and others and sometimes not discreetly. Hahaha. I’ve choked, bled and puked. I’m eternally guilty of pushing the limits of myself and others as well as my equipment. My van is dented. My wheelchair is scratched and dirty. Hmmmmm.
I’m only telling these things to encourage others who might be unsure. My things can be fixed or cleaned. More importantly is that my photo album, story books, passport and especially my heart are overflowing. My time, energy and money have been well invested in good times with the best people. Isn’t that what it’s all about? Maybe?
So for all of my clichés, my mixed metaphors and general bullshit I will end this episode with this classic poem by Robert Frost.
The Road Not Taken
Two roads diverged in a yellow wood, And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black. Oh, I kept the first for another day!
Yet knowing how way leads on to way, I doubted if I should ever come back.
I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
No one chooses the road of ALS yet, no matter where you go, there you are. I hope that no matter which path you choose to take, you find peace and happiness.
Besides, it’s only a mild case of ALS. Ya know? Of course you know.
