I’m obsessing about the pureness of his words and his honesty. Dan is learning to walk again, after a year of scary scans and is-this-cancer? scares, and now he is rebounding from Guillain–Barré syndrome. This devastating neurological disease put Dan in a wheelchair, but his words have become dancers. And he’s learning to walk again. He honors me with permission to share some of his words. Here’s my favorite: “…sometimes it’s more fun to build the fort than to play in it.” Devour this now like the first slice of pizza, or treat his mini essays like the bag of Halloween candy. And as you do, send Dan your best prayers or mantras or good juju for healing, or maybe, a therapy dog “that doesn’t have to be walked, doesn’t poop, and will never die.”
Sometimes I feel like I’m being a bit narcissistic and a little selfish but Facebook is kind of like a modern-day ‘Message in a Bottle.’ I’m alone on a island and I’m scribbling words on a page, putting them in my bottle, throwing them into a vast ocean and hoping one person gets it and sends help. But I guess what I’ve learned is that this note is being read by more than one person and help is sent instantaneously and it’s beautiful.
And I don’t write on purpose.
Things just come to me in the moment and I jot them down before I forget them because with a neurological illness I tend to forget a lot. And sometimes I have a thought that I want to put in that bottle and throw it into that ocean. And I know some think it’s mildly annoying and I should keep a lot of this to myself. But sometimes I can’t. So if the moment is right and that spark hits me, maybe I’ll jot some words down and throw them in the ocean. And if they’re worth sharing, please share. But I’m not special. I’m just one man going through something hard, alone on an island, and finding a way to deal with it.
And this helps.
The ocean, unfortunately, is filled with bottles that no one is opening and people are forever stuck on that island. I’m just lucky someone is opening mine.
So, I’m learning to stand up without using my hands to pull me up. While I do it, I press the back of my legs against the chair for help. But that’s cheating. But I’m standing. So do I enjoy the view from up here or dwell on what it took to get there? Life is funny like that.
Music is magic:
Where do you find it? Where does it come from? The lift. The strength. When it seems unattainable you get desperate. The mind starts playing tricks on you. If only you had ‘this’ you’d be fine. It’s easy to assume what you don’t have is what you need. And then one day I realize it’s right there, it always has been. During those dark, horrible, lonely nights in the hospital it was there. On the path to reconstruction it was there.
Today was rough. My body quit. My spirit was draining fast. But I’m in the crowded gym of the Wellness Center. Hold it together man. Nobody’s watching, but everybody knows. I’m about to lose my shit. And like that. Boom. Like the whisper of the love of your life in your ear….music.
A song buried in a playlist appearing like magic during shuffle play in my headphones. And suddenly I found the strength. I found the will. And it’s always been there. So I finished my physical therapy. I struggled to my feet, took a deep breath, smiled, and walked the fuck out of there.
And nobody was watching. But everyone knew.
Find your magic. Find your strength. Find your will. And although I can’t fix your problems, I can promise you won’t have to face them alone.
Breathe. Hold your breath.
The voice of the CT scanner. Although I’ve had a bunch of these this past year, I haven’t gotten used to that voice. It’s better than the riot-noise and claustrophobia of the MRI machine. But that voice. And I breathe. And I hold my breath. And I close my eyes, even though I know it’s not going to hurt. The 10-minute exercise of looking for a vein in both arms while eventually settling on a vein in my hand, well, that hurt. But still, I close my eyes.
Breathe. Hold your breath.
And it’s over. Do you need help getting up? No, I’m ok. She wheels my Rolator over and I get up. Can you get back to the lobby OK? I think so. Go down this hallway, make a left, a quick right, down the hall to the lobby. Got it. And I’m off. I’ve heard descriptions of the ‘runners- high.’ But not the low of the ‘long-lonely-slow-walk of a strangely-empty-bright-shiny-hospital-hallway behind a blue Rolator-low’. And I’m feeling it.
And then I see someone coming the other way.
I instinctively move to side, head down, embarrassed, trying to not be noticed or to get in her way. As she passes, I look up, and she smiles. As if to say, it’s ok, you’re doing great, keep going. I smile back, as if to say, you’re right, thank you. No words, a simple smile. So, I continue. I’m almost there. The light from the glass lobby is in sight. And like stepping off a plane into a crowded airport after a long hard journey, I stop to look around. And as I reach for my phone to text my ride, I hear a better voice.
Are you ready for some Starbucks?
I look up. And I smile.
Hell yes, Dad.
As part of the recovery I’m able to stand at the counter that separates my kitchen and living room and do some basic exercises and stretches. Build strength and balance they tell me. And then it happens. My phone, that’s about 15ft away, starts to ring. Without thinking, assuming it’s the service taking me to therapy tomorrow, I turn and move towards the phone. I get about 4 steps and I freeze.
No walker, no braces, no cane, no counter.
And the phone is still ringing. Eight months of struggle and here I am, standing on my own. But the phone is still ringing. It feels like an eternity. But alas, today I failed the test. I turned, and headed back to the counter. The phone stopped ringing. I initially was really disappointed. I was so close. It was right there. But then I started thinking about all the time and effort many people have put in to getting me to that point. Those 4 steps felt like a mile but for the first time I did it by myself. The phone will ring again and maybe I’ll reach it next time. Cause you never know who may be calling.
A lot can happen in 45 years. A lot happen in 8 months. A lot can happen in 10 seconds.
Building the fort:
Do you remember your first kiss? I do. Some of you were there for mine. Unionville High School gym, Fall dance, 1986. I still remember the song that was playing. I think about that now cause it’s like I’m 15 years old all over again. My concerns these days are, can I take care of myself, did my mom do my laundry right, when will I be able to learn how to drive, who will I take to the Fall dance.
There’s a girl.
Let’s call her Abby. She’s smart, beautiful, nice. She likes hockey. So, way out of my league. But at 15, I only have a few things to win her over. My words, and music. So today, rather than be 45 and watch more video of the children gassed to death in Syria, or go through all my medications and make sure they’re up to date, or check on my 401k, blah blah blah, I’m going to be 15, and think about driving, getting that first job, and impressing Abby. So since I can’t leave a note in her locker I’ll make her a mix tape. And my biggest struggles today will be which Smiths song to choose, and does she like that new band INXS, while not choosing a Cure song (yet). And when I’m done, I’ll put that mix tape in a box in my closet with all the other tapes I never had to courage to give.
Cause I’m 15. Quiet, shy, broken, you know– weird.
And Abby likes strong, brave, funny, athletic types (damn you Erik Lee!) But unlike when I was 15, I won’t agonize and worry anymore. I’ll enjoy the process, the journey. Sometimes building the fort is better than playing in it. And who knows, maybe when I learn to drive, get that job, get that mix tape just right I’ll ask Abby to the Fall dance. And I’ll get that first kiss. Maybe I’ll get the courage to ask her.
Or maybe I just did.
Ok. I’ll try to be brief. I’ve been informed my ‘positivity posts’ are ‘a bit much.’ As someone battling a rough illness and spending most of my time alone, unable to do much, I spend a lot of time trying to find something positive to do. I have TV, my phone, my computer, and Spotify. So I can be sad and feel sorry for myself or find the beauty in sports, art, music, and humor. And sometimes I choose to share it. I don’t do it for ‘clicks’ or ‘likes’ but to feel like I might be connecting with someone out there. Ultimately, my goals are to stand on my own, walk out of this apartment on my own, get back to ‘real life’ and maybe find true love.
Fortunately, I have this medium and I have you.
I don’t waste my time praying for miracles. But I do try to live a life worthy of one. And I try to exude love and positivity. This is my life now and I appreciate and love every fucking second of it.
I’ve decided I want to get a therapy dog. I just need to find one that doesn’t have to be walked, doesn’t poop, and will never die.