Thursday, December 31, 2020

I Feel So Alive: Anthem for Nathan

Missing this guy, so I'm reposting this from last month. This is my f-u to 2020, the year we lost so much. Year of death, Nathan's spirit will outlive you:

This is the Day of the Dead, when we think about loved ones lost, and all week long I've been thinking about Nathan. Nathan took me on my first skydive. That day was electric, one of the most exciting of my life. He left this earth a week ago.

We jumped together for Skydiving for MS. For 19 years MSers and allies took to the air and back down again, 60 miles west of Chicago. We called it 'The most exciting fundraiser in the world.' I got hooked: I did it 11 times.

I loved skydiving, but more than that, I loved skydiving with Nathan. He was my instructor on my first four jumps. Every single time I saw him, he was all energy, like a jolly pirate. Larger than life and all gusto. Skydivers have their own vibe and subculture, like surfers of the sky. They laugh more, their comradery more intense and out there for all to see, at least at Chicagoland Skydiving Center in Hinckley, Illinois. But even in this wild cast of characters, Nathan stood out from the others.

S4MS was a big day, and I needed a big instructor. I'm a 6-2 quadriplegic and Nathan was strong enough to do everything with another human being strapped to him. But he also had the expertise of thousands of jumps. He specialized in accessibility and took care to learn about our needs. He introduced almost two dozen paraplegics and quadriplegics to the ecstatic experience of skydiving. 



He'd suit me up, sweating with the effort (imagine dressing a mannequin who knows nothing but bad jokes). He'd weave a cord through the jump harness and pull tight. I came rolling out of the hangar trussed up like a pot roast. They rolled me to the tarmac and hoist me up on the floor of the plane like a sack of potatoes. (All of these food metaphors making me hungry.) In other words, working with me was a ton of work, and year after year Nathan without hesitation was right there for all of it. What an honor.



Then 14,000 feet into the air, where the air gets chilly, the roads look like slot racing, and farmland becomes an endless checkerboard quilt, the see-through Plexiglas door lifts like a garage door, and the air and prop-noise roar inside. Showtime. Using grab bars, Nathan stands up for the both of us: harnessed together, we look like a two-headed, four-legged science experiment teetering toward the threshold. Here, looking down on the earth 2 1/2 miles below, was where I thought fear might kick in. But there was no time for that. He pulled us through the cargo door and we were gone!



It's an amazing, intense rush. The first several seconds are breathtaking. You tumble and spin, and all around are churning visions of blue sky, white clouds, the airplane, the earth, sky, clouds, airplane, earth, blueness. Surprisingly, you don't feel vertigo; nausea is rare, Nathan told me, and in thousands of tandem jumps only one person ever got sick. Your mind is occupied with processing the swirling kaleidoscope of images. It is rapid flight. In one minute of freefall you fly 10,000 feet through tornado-level 120 mph winds, so remember to pull that chute. Somebody? Nathan pulls the chute and changes the game.

Under the canopy of the parachute, presto, the world turns serene. A few seconds ago my ears boomed like volcano, but now it's quiet enough to have a conversation. You just completed your first freefall, my man, Nathan says. We turn this way and that in our maneuverable parachute, and he points out the landmarks.

I tell him this is the first time in years that I've moved around without being strapped to a machine. I point to a black dot on the field far below. See that? That's my wheelchair. Keep me out of it as long as possible.

We heckle the people down below. I don't know how long we float around like that, maybe five minutes. Nathan points out the plane circling in the distance, and says we need to beat it down to the landing area. I tell him no, let's stay up here. To be clear, I love my wheelchair, it's my ride - but we can take a break from each other without hurting our relationship, we're cool like that. But no dice: Nathan shifts me up in the harness, so that his feet are positioned lower than mine. It's ingeniously simple: his feet are going to reach the ground first.

And that ground gets closer and closer. The grass rushes past.  People run to intercept us.  Here we go, I think, gritting my teeth in case of pain.

The bad news is that they didn't catch us. The good news is they didn't need to. Smooth as silk Nathan touches down, and an instant later my feet plop to the ground. Just plop, like when you lie on the ground and let your hand fall at your side. Which is so ironically funny -14,000 feet at 120 mph, and all there is was "plop." Each and every time, Nathan would set us down in the grass as light as an egg. (More food.) 

Parachute magazine, with Nathan on video, and Steve "Jacko" Jackson


Through it all, we shared a ton of laughs and good times. You can't help but laugh after that journey, after all of that effort and adrenaline. Like, why did we do all that? To laugh! And the next year we'd do it again, and again, and again.



Nathan also put together the video I received after the jump. It followed us from street clothes to jump harnesses, from hangar to airplane to touchdown, plop. So much fun. When we exit the plane, Nathan cues a hard rocker for the soundtrack, I Feel So Alive by POD.

Everyday is a new day
I'm thankful for every breath I take
I won't take it for granted
So I learn from my mistakes

I feel so alive for the very first time
I can't deny you
I feel so alive
I feel so alive for the very first time
And I think I can fly.

.
This year was a lot of loss and remembrance. I'm celebrating Nathan Dexter, my friend whom I'm tied to for life. Also, celebrating my journey with multiple sclerosis and disability. Yeah, I've hated a lot of the times and ordeals along the way, you can't sugarcoat that, but these things also shaped my voyage uniquely. If Odysseus had gone straight home, he wouldn't have sold any books. These are the things made me me. They turned me into a quadriplegic man who needs assistance to live. They turned me into a writer with a special perspective and cheesy food metaphors.

They also brought me to a guy who changed my life, named Nathan. Blue skies forever, my man - now you can touch all the clouds you want.

Thanks to Becky Johns for her photos.

Thursday, December 17, 2020

My new article @The Mighty: When the handicap sign starts looking like someone you know


https://themighty.com/2020/12/admit-need-disability-parking-permit/

It’s an epiphany when you realize for the first time that the white stick-figure on a disability parking sign is you. That’s you. Now you may park in this fat sirloin of a spot. Now you are “the disabled.”

This leap to disabledhood is as much a mental process as a physical one. And I fought the knowledge, down the line, tooth and nail. I always do, with every new adaptation or assistive device, fight, fight, fight. It sounds courageous, but it’s really it's ridiculous. I have a very thick head.

I can’t remember the moment I resolved to pick up the disability parking permit application. It must have been some watershed event, perhaps my 3,000th fall, the one that rattles your very teeth. Falling itself was no big deal, and I might do it a dozen times in a day. After a while, my body looked like Keith Richards’ after a bender, but big deal, you dust yourself off and get back in the game. But maybe that 3,000th time was the one to slosh my brain in its comfy bath of cerebrospinal fluid: Wake up, you green-gray piece of fat!

Keep reading...

Wednesday, November 11, 2020

Serving with MS webinar, Friday & Mab's 1st 5K!

Happy Veterans Day! 

On Nov. 13, the MS Society's Ask an MS Expert webinar will feature the challenges of serving while dealing with multiple sclerosis. This Friday, Air Force veteran Karla Clay will share her story of living with MS. One of my best and strongest friends went down this same difficult path: I'm watching for him.


Also, this lady ran her first official 5K! (She usually does one on her own every week.) She ran to raise funds for the Wounded Warriors Project.


For years she performed patriotic musical shows for veterans on this day. She got into her special audiences, and they were really touched by her show too. So many of them would thank her afterward and share their stories. It was one of her favorite days of the year. Now she misses those Veterans Days. Today she ran in their honor. Her write-up:

First, a big thank you to all the veterans out there - we owe you so much! Today I did the Carry Forward 5K for the Wounded Warrior Project (and another big thank you to all who donated.) The goal is to raise $600,000 by the end of the year and to date we're at over $586,000.  Of course, the temperature dropped from the 70's yesterday to 46 degrees today, but as you can see, I was appropriately ostentatious in my attire for the event.  I started by giving a flag to my neighbor across the street who is retired Coast Guard and ended by giving my Wounded Warrior Flag to another neighbor who is retired Air Force. My plan was to jog as much as I could, but I must have jolted one of those pesky inner ear crystals loose when I started to jog and got a little vertigo, so I ended up walking. Last Saturday, I walked out my course for the 5K, but when I got to the end my watch said I was only at 2.7 miles - so I kept going. Turns out the GPS from my phone wasn't connecting to the watch and I ended up doing an extra 1/2 mile (I'll be ready for a marathon soon --- NOT!)



Saturday, November 7, 2020

Oowy chewy rich n gooey cheese - Spiral Diner, Dallas

1101 N Beckley Ave, Dallas, TX    214-948-4747

https://spiraldiner.com/

My first quesadilla since I went vegan! Seven years is a frckn long time. That's a big deal to me. Quesadilla is one of a handful of dishes I truly miss. Vegan cheeses just don't cut it in quesadillas, so I had written them off to my rearview mirror. Until today, when I saw it in the Spiral Diner online menu and locked in, and all day long I was a'yearning for the time when I could order. This miracle cheese is the real deal! It's gooey and tasty and something to sink your teeth into. What is it? How does it work? Cashews and something else that we can't figure out. Anyway, this fat quesadilla oozed with it and faux beef and had a chipotle sizzle even before I garnished with pickled jalapenos and guacamole. I was no mas after tackling this monster.

Mab got the barbecue nachos special, loaded with tangy saucy strips on crispy homemade chips and topped with queso. They gave us a tub of queso to make a mess with, which we bloody did. Definitely leftovers in the morning, mushy but too good to throw away. Spiral Diner's got its cheese down. What a fun meal. This place is exceptional. Big menu that I can't wait to see again, and three locations. Treat yourself, check them out.

Nearby camping, Cedar Hills State Park

flight museum, Frontiers of Flight

Sunday, November 1, 2020

da Plane, da Plane! - Frontiers of Flight, Dallas

6911 Lemmon Ave, Dallas, TX   214-350-3600

$7–10 · flightmuseum.com

If you like planes, here is your happy place. Located at Love Field in Dallas, this mid-sized museum houses dozens of aircraft from all eras. Parts of flight simulators for the SR-71 and T-38, and a fun little tribute to Southwest Airlines that started at Loves, including an airliner built into the side of the museum, half-in, half-out. (In fact, isn't Southwest's stock symbol LOVES?) All wheelchair accessible.

A few small displays brought it home to me. The section on the earliest air balloons was all new to me. There's also a tiny recreation of the Wright Brothers shop, which I don't know if it was historically accurate or not, but it smelled of cedar, which took me right back to working on construction sites. The good smells from worksites, that is. Smells do that.





Back to FOF, my favorite parts were the real Apollo VII capsule and the models of the Wright Flyer, Sopwith Pup (I geek over World War I planes) and the Sputnik that was amazing to look at because it's only the size of a metal beachball yet it changed the world. The announcement of the beachball that was the first object in space was one of the high points of the Soviet Union and probably all of Russian history, and it sent wonder through the world and terror through Americans that led eventually to landing on the moon. A beachball with antennas did that. Like the Wright Flyer, disruptive technology.

Wright Flyer model, top left


Outer space disco ball: Sputnik model, top middle

Another of my favorites was a video playing way in back. It is a World War II P-47 pilot telling his stories, and he can tell em. I started listening out of a sort of duty because it was stuck behind another newer exhibit. I felt bad, thinking here's a vet literally elbowed out of the way, I'll give him a couple minutes. I ended up spending more time here than anywhere else, because the man tells some excellent yarns! Here he is, Charlie Mohrle. Wish I could buy him a few beers. Look for him in the corners of the World War II section. There's also a super-knowledgeable volunteer who walks the museum fishing for questions, but boy, some Texans can talk!

There are plenty other aircraft - military, experimental, helicopters - not pictured. We spent a few hours here, fun afternoon.

Also Dallas, the Mab Tower (Bank of America), 72 floors she climbed

Nearby camping, Cedar Hills State Park

Nearby messylicious vegan eats, Spiral Diner

Friday, October 16, 2020

This Year, Everybody in: Abilities Expo Virtual Experience Nov. 20-22

Great news - like everything else this year, the Abilities Expo will be online. You, you, you and you are all going!

Whether you're in the market for equipment or not, whether you have money or not, going to the Abilities Expo is a good idea for people with disabilities and their families. You're seeing some of the latest tech available on the market. Service organizations come out to show you what's out there to take advantage of. There are excellent and fun presentations by experts and entertainers alike. And tons of people with disabilities and their families to see, to meet, to swap ideas and numbers with. I come away with new ideas to talk out, new numbers to call, new websites to check out, new friends to email, brand new energy.

Of course you got to get their first. Sometimes that's a hassle or an impossibility. The Abilities Expo only takes place in six cities every year. Good for the folks near those cities, right, but what about the rest? And of course Covid wiped out the in-person Abilities Expos earlier in the year, all canceled.

Well the great news is that the circumstances leveled the playing field for everyone, and the Abilities Expo goes completely online from Nov. 20-22. Everybody can attend, for free. All the exhibitioners, service orgs, presentations (Tony-winner Ali Stroker!), all waiting for us to visit in our jammies.

Good on ya, organizers!

I already said Free free free, but first you gotta register.

November 20-22, 2020

Online Globally

Accessible 24 hours a day starting Friday, 9 am PST.

Friday, October 9, 2020

Cedar Hills State Park: the Forest by the City ... n ANTS!

1570 West FM 1382, Cedar Hill, TX (18 mi. from downtown Dallas)

972-291-3900, Cust serv: 512-389-8900, Website

Site 124, Loop H

Woods and lake 20 min. from downtown

Upfront, this park is overrun by invasive Argentina ants. They are small, an eighth of an inch, and seemed pretty harmless, although Texas Parks and Wildlife warns they could mess with your electrical system. TPW is upfront about them and gives guidance how to protect you and your vehicles.

Not this kind of ant

The ant hordes are for real! We brought along insecticide. Mab sprayed down all contact points with the ground (wheels, jacks, connections and the undercarriage). She did this a couple of times. So we did everything TPW said to do. Yet by evening, we were overrun. It turns out the heavy afternoon rainshower had washed the bug spray off of the water hose and electrical hookup (we were preoccupied with a different drama: a broken skylight cover leaking) and the ants seized their opportunity.

Exhausted, we kept it together for the night. Once we left, a day of spraying knocked out 99 percent of them. So, whew, it was a happy ending.

Lesson learned: take the warnings seriously (we did) and remember to respray after rainstorms. TPW ought to plainly state that. Writing the letter now.

Still here? Here is the rest of my writeup, pre-ant:

        The first stop on our trip.

We got out hours before Hurricane Laura: one of its rain bands had already reached up to us from 400 miles away. A few hours later, we pulled into Cedar Hills Park on another Texas scorcher, 110° heat index. Just being in a state park at least puts your mind in a cooler state. True to the name, lush cedar trees are everywhere, one of my favorites. Red and gold sunsets over the lake were visible from our trailer. Also Jupiter passing above the moon. There are five hiking trails here, of all skill levels. One is an easy two-thirds of a mile, described as family-friendly, that I never got to check out. Busy guy.




Site 124, Loop H, is an ADA site 50 feet deep, level concrete, and plenty wide for clearance all around. Electric, water. Dump station in the park. Verizon and T-Mobile good signals. At the back, privacy and a covered picnic table that's wheelchair accessible. Fire pit. Lots of space between sites. Steep drop-offs from one side of the pad. At the front, a crack across one side of the pad could be a problem for some wheelchairs, and same for a slight lip where the pad joins the trail road. Bathrooms and showers right next door. 



Mab's hikes campgroup

Lakeshore (inaccessible)


Throughout this trip I kept thinking about my grandparents. I was seeing things they never did. As refugees they saw plenty of Europe, but mostly stayed put where they settled in the American Midwest. One of my grandfathers visited the Pacific Northwest. Decades later we bought him a monkey puzzle tree like he saw there, and he planted it in Michigan. My grandmother went with us on a fantastic roadtrip to Arizona. But most likely they didn't see any of what I was seeing. I look through their eyes, and they see through mine. I have their DNA after all, and some of their inherited consciousness and sensibility. It's their grit and vision that got me here, after all. So I am seeing for them, with them. I like it that way better. We all would enjoy this trip.

Nearby flight museum crammed with planes, Frontiers of Flight

and messylicious vegan eats, Spiral Diner

Wednesday, August 19, 2020

Gulf Islands Natl Seashore / Ft. Pickens / Pensacola - Castles in the Sand

Gulf Islands Natl Seashore     228-230-4100

Fort Pickens  1400 Fort Pickens Rd., Pensacola Beach, FL            850-934-2600

There are fees (recommend buying the America the Beautiful pass for all natl. parks & sites)


        Driving around downtown Pensacola, and the area around Plaza Ferdinand, the park where Gen. Andrew Jackson (later, president) accepted control of Florida from Spain, you are struck by the foreign influence in the buildings. I don't know what you call this architecture, but anyone who's been to New Orleans will recognize the same 2-storys with shops below and apartments above, with covered walkways on both floors. The foreign flare comes from the port of Pensacola having been ruled under 5 different flags: Spanish, French, British, Confederate and American.

Right there at Jordan Valley Cafe (201 S Jefferson St, Pensacola, FL, 850-505-3528) we stopped for spiced potato salad that bummed us out when it was gone. Tabbouleh was delicious and fresh, same for the hummus with pita. Crazy good, smiles all around. That kind of meal.

Naval Air Station Pensacola has incredible visitor attractions, like Blue Angels simulators. Too bad it was still locked down (Feb. 2020) from a shooting incident months earlier. We were definitely on edge after making a wrong turn down the road to the front gate when we knew very well the place was locked down because we'd tried to get in the day before. I'm pretty sure we bypassed a sign saying the base was closed, only because it's a narrow road with no turnoffs. And here we show up in our outsized and unmarked white cargo van. Creepy enough? But the sentries were good to us. Phew.


The day was too cool for Pensacola Beach. We went on to cross the bridge to the barrier isle (why does crossing the water always makes me sing?), heading to Gulf Islands National Seashore. A single road stretches about 8 miles to the western end of the island. You pass rolling white sand dunes topped with brown grasses, but we weren't here for beaches. On the western end stands Fort Pickens, which makes for some excellent wheelchairing around.










Pickens' big guns guarded the coast from the 1830s until 1947. The ruins are a complex of brick, cobblestone and concrete. It's not one for the postcards, but was a playground for me. I plowed my wheelchair all over this place. In it, around it, through it, Fort Pickens was mine. I couldn't get everywhere: there are a lot of chambers and a whole top-level of parapets and outlooks I couldn't access. (Which bums me now that I write about it.) There are plenty of rough, bumpy sections, and narrow, inaccessible doorways. But listen, I was a kid here. I went everywhere, investigating stuff, on my own. I want one of these in my backyard. I went until I was exhausted! Mab and these chill people we met were kept coming at me with different nooks and areas for check to out. After a while I told them, Enough, stick a fork in me, I'm done. And that is what I my search is for.


Built by slave labor, including Geronimo.








We wandered to the fishing pier across the road. Plenty of people, and as you scan through the crowd, wait, go back - there, standing perfectly still like a floor lamp was a tall, spindly seabird, about 3 1/2 feet tall. I swear he averted his eyes when we spotted him. He was undercover, in plain sight.


See him? Undercover, baby. 


        The 10-year-old next to us said, "He's been here the whole time I've been here. If you don't watch, he steals bait. I went to my cooler and when I came back I think two of my fish were gone."

Smooth operator.