Is There a Doctor in the House?

Wheelchair life is one big video game

Written in the thick of the pandemic, and dedicated to Judy Heumann, who fought to make grocery stores and everything else accessible.

When I write, I'm trying to open minds by sharing my experiences. And now, my friends, I'm going to do just that for you. I want you to see things through my eyes -- but I'll need your help. If you'll look behind my ear, there's a little latch. I'm quadriplegic and can't reach it myself. So, if could you get that for me? Thanks! It pops right up and the whole top flips off… Like so! Now you can climb right into the captain's chair you see there behind my eyes. Go on, get yourself a seat. Get comfortable. There. Flip it back closed, and all right! You'll find emergency exits to your left and to the right. Now, strap yourself in: It's gonna be a bumpy ride. 

We've been keeping Covid-cautious, but today's a special mission because we're out of staples here at the house. But even more importantly, my wife is out of Dr. Pepper, and caregivers and lovers cannot exist by bread alone. So it's Diet DP STAT! I mean, you haven't seen my wife without Diet DP. Yike! We'd better hurry. Let's go!

We push through the front door and already she has the wheelchair lift lowered. We'll back onto the wheelchair lift. Then up we go into the van, and into the back of the van, making sure there's room on all four sides for the tiedowns. Then, kick on the jams and we're on our way. 

Now, rules of the road. These country roads are bumpy, so you have to hold on tight. So I want all of you to do an exercise with me right now. I want you to tighten your stomach muscles. Go on. Pull in your belly button to your spine, and push your elbows into the armrests. Can you feel how tight your belly is right now? Good, because brace yourself! here come the railroad tracks! Arrgh! It's rough riding with me, but hang in there, 'cause we're just getting started. I promise I'll try to warn you of potholes, all right? 

We turn out onto the state highway. We pass the rusted woodmill. The homesteads with shaggy trees. There's a few ranches and an old family cemetery we go by. Seven miles into town, New Albany, Texas, population 2041. There's not lot of money for roads and everyone drives big trucks. So, watch out, POTHOLE! Whew! I told you it would be a rough ride, right? And don't relax, because pulling into the Dollar Store is an even bigger one -- BRACE YOURSELF! I warned ya. But tell you what: Hang in there, and I'll pick up a treat for youinside. The fun part is still to come. Now let's park this beast, mask up, and get this done. 

OK, it's time to play a game. Remember Pac-Man, the classic arcade game? You know the one. Well, this will be like Pac-Man, but it's in 3D. You and I are going to navigate the maze of aisles, looking for our treasures -- which today are going to be Noodles, Fruit, and Protein Bars. All the while, we'll have to dodge the obstacles we find, and especially avoid the "Blue Goblins," the folks not wearing masks, which these days, is pretty much everyone. The clock will be ticking, so we gotta be quick. Take too long, and you could catch Covid: Game over. Meanwhile, Mab will be working on a list of her own, and afterward we'll meet up and get the heck out of there. So get ready. Player One, begin! 

We go down the first aisle. Waka waka waka waka waka. That's the noise I make behind my mask. It's from the old Pac-Man game, remember that? You should see the stares I get when people see me go by: "What the?" Waka waka waka waka waka waka! But we can't have too good of a time: If I don't keep my eyes on the road, I tend to crash into stuff and then it's, "Clean up on Aisle 1!" But already we've found our first item, and that is Pad Thai Noodles. Of course I can't reach them, and I can't write it down, so I memorize P for Pad Thai Noodles, and then it's off to the next aisle. Waka waka waka waka waka.

Aisle 2, there's a pallet in the middle of the aisle. Skip! Go to the next section. All right, now we're in produce. Hmm, the apricots look good. OK, A is for apricots. So we already have P, and now we have A. But we also have, like, a family reunion happening here on the left. and on the right, incoming! A goblin! Back up out of there. Beep-beep-beep-beep. Waka waka waka waka waka waka!

Next aisle. We get three-quarters of the way down and there's a shopping cart that I can't quite squeeze past. (Game show loser sound.) Turn around, go all the way back to the beginning of the aisle.

Next aisle, coast is clear! Let's go, go, zigzagging through the next couple aisles, looking ... and there! It's our final treasure. The protein bars. Actually they're called Lara Bars. L is for Lara. So we've got P, we've got A, and now there's an L. P-A-L, that spells "pal." Let's find Mab and we'll track down pal. Come on! Waka waka waka waka waka. And of course, she's secured the prime directive, which is a grocery cart full of Diet DP, liquid gold, Texas tea. Mission accomplished! Let's pay up and blow this popsicle stand. Waka waka waka waka waka waka.

All right, here we are, safely back in the van. And since you were such a good sport, I got you that treat I promised. It's a Twix bar. And I hope you like to share, because remember ... I know where the potholes are!

A Guy and His Guitar - "Rock n Roll n Mangled Spinal Cords"

With a chronic illness, you have to focus not on what you can't do -- but what you can...

You've got this one life and time's ticking...

You're a fool if you just sit in your own shite all the time and don't look up at the sky...

Just because things didn't go the way you planned, guess what? It doesn't go according to plan for anybody else either...

That was a column I was reading, words to that effect.

Ah, shaddup! is what I was thinking.

Which is funny because the column in so many words summed up my approach to MS. I mean, I don't say things like that to others, but the self-talk in my head cycles through things like that all the time. But sometimes you don't want to hear the spiel, right? Not even if it's your own.

I kept reading though, because it was written well and I was almost through it. And it turned out to be a good piece, because before I got to the end it had sent my mind off spinning in its own direction, like what a good book will do to you. The author said not to focus on the things you've lost, but the things you've gained. Which makes for tricky math. You've got a lot of things on the one side, and not as many on the other. Do they balance out? Only if the things gained are a lot bigger, more substantial. Disability toughens you: plus. It makes you more resourseful: plus. I guess in a weird way, disability brought me my wife, because neither one of us was in it to get married. Our attitude toward marriage was more like, 'Ick.' But things changed, kind of fast, which is a whole other story. Bottom line, I got the girl, even if I had to get disabled to do it. Jackpot. Gotta do what you gotta do.

But while reading that column about losing things, images flashed through my mind. One of the first was giving away my guitar. A guy loves his guitar. We were literally attached at the hip for a dozen years. I walked around with it everywhere. It was a black '84 Fender Stratocaster, and it was all mine. But my fingers eventually were no longer mine. I loved playing but was never wizard, and yet my playing grew sloppier still. A lot of playing is muscle memory: practice practice practice and you'll play better and faster. But I was going the opposite direction. My fingers were unlearning songs. In the middle of jams, the guitar pick shot out of my hands like a bullet. There came a time when the guitar never left its case, and when the case grew dust. I scarcely noticed because life had become so tiring that simply going back and forth to work and school left no time for guitar anyway.

Dangerous Black Man Armed With Strat

Times with my friends were rarer too, so once, when one of my best buds was leaving my apartment, I happened to spot the guitar standing in the corner. I didn't think about it beforehand, but I told him to take it. Of course it had to go to him, the only one of us with talent and seriously playing anymore. His bands would go on to play the big Chicago clubs on Saturday nights. It was instantly clear to me, so I said to take it with him. I had to say it twice because he didn't understand. I didn't either, I just wanted it gone. That and the acoustic, a chunky strumming guitar. That was a helluva weird feeling afterward. Notice how detailed this got? It's like telling your friend about a breakup. A guy loves his guitar.

I don't remember getting a mobility scooter, or getting approved for disability, or getting the blue parking tag, but I remember that feeling of my guitar being gone so well. I'm feeling it right now. I felt it while reading that column.

That was years ago. Water under the bridge. I think I saw it once in all that time. I couldn't play it, so who cares anymore? We broke up. But here's the cool wrap-up, the thing gained.

Little King

My friend's son, who is my godson, grew from a little train fanatic into a tall, cool teenaged bass player like his daddy. And just like his daddy, he's fronting garage bands. In the past year photos surface of him slinging a guitar that's looking mighty familiar. He's made a couple slight modifications to it, and I'll admit wtf'ing at first sight. But a guitar is a very personal thing. A guy loves his guitar. So you'll do what you want to make it yours. The Strat's his, and they look right together. I'm loving that. I got the girl, he got the guitar. It's a crazy life, ain't it?

I also have admit something else that says everything turned out just the way it was supposed to. Because honestly, truly, I totally sucked at guitar.

Everglades National Park - Flamingo Campground & Visitor Center

We returned from this lifetime kind of trip around the Gulf Coast right before the coronavirus spread over the nation and our minds. I'm posting this anyway as a diversion and hopefully it will help somebody months from now. This was an odyssey filled with magic moments, and we feel so lucky to have done it when we did, and when we could have. I think everyone understands by now: do the things you want to do, don't wait. - Wheelie

Park HQ: 40001 State Rd. 9336, Homestead, FL, 305-242-7700

Website: https://www.nps.gov/ever/index.htm

Accessibility Features: https://www.nps.gov/ever/planyourvisit/accessibility.htm

Park Map: https://www.nps.gov/ever/planyourvisit/maps.htm

Flamingo Visitor Center 239-695-2945

The Everglades is a massive national park in the vein of Yellowstone, with several visitor stations spread many miles apart. For instance, from our entrance at Ernest S. Coe Visitor Center some 30 miles southwest of Miami, it took an hour's drive southwest to reach Flamingo Campground inside of the park. Most of the terrain on the way looked like tallgrass prairie, not the marshes we expected after driving this way over the coastland bayous on I-10. During our stay we learned that the Everglades was the first park established not for its physical beauty but to preserve the area's plant and animal life. Its success in that regard is argued forever but I'd wager it's good it's here.

Flamingo Campground

We spent two nights in the Everglades Flamingo Campground. Pull-through, level pad, 30 amp, with water and dump station. Ours was an ADA site and easy to get around. It came with a really cool picnic table with one side extended out so that I could drive underneath. Huge site, and surprisingly not a lot of campers considering that the rest of Florida was jampacked. The campground is ringed by trees and we saw a beautiful sunset here, but of itself not much to look at. Only a few hundred yards behind us was Florida Bay, which is basically the entire submerged tip of Florida, and a few hundred yards away from that, the Flamingo Visitor Center. It's always a delight, the air is just different, staying inside a national park. I get the night-before-Disney-World flutters in my stomach!

Flamingo Visitor Center

The next morning at Flamingo VC, five minutes away, right off the bat we made the first big mark on our checklist: a hulking crocodile lay 40 feet away across the water from the visitor center. He was so large we could not even see the whole of him in the tall grass, and of course a couple of kayakers poked their noses in until someone at the center called a warning. Then right overhead in a light fixture a family of ospreys kept their nest, with the little ones just visible. Nearby on the other side of a footbridge, a large croc floated eerilt still below. Now you're reading that right: these were crocodiles, not alligators, because at Flamingo the water is saltwater. Further north and east you'll find freshwater and the alligators that the Everglades is known for. But according to a ranger, this area of the Everglades is one of the few places you can see this type of crocodile in the lower 48.

Also at the same visitor center swim the manatees. All day people tried to glimpse these shy mammals, but at 3:30 PM they really turned out and we got to see them up close. A ranger said it happens daily. The manatees surface right up to the marina looking for food, algae. Mab was the first to see one. We wondered aloud if we might, and she looked down and she and the manatee were staring eye-to-eye! Then of course the rest of us ran over and scared it away. But now there was no shortage of sightings, near and far. The rangers said they're as friendly and shy as they look. They're definitely chill. Mab just brought me a vodka and tonic as I write this up, and the olives floating around in the bubbles remind me of how the manatees would pop up and just kind of drift down again out of sight.

Flamingo VC

A big disappointment was the charter boat run by a concessionaire that was not wheelchair accessible. We never got an explanation why, but another concessionaire at Gulf Islands Visitor Center the next day was mighty surprised to hear - because they do offer accessible boat tours at Gulf Islands. At Gulf Islands there are concerns about the tide and the weather affecting the boarding of the vessel. Think you crossing a ramp between the peer and the boat, which is what this is, and the angle has to be doable. But at Gulf Islands, most of the time they get it done. We and the Gulf Islands concessionaire let park officials know our feelings.

Accessible trail along Florida Bay

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Florida Bay

Also at Flamingo we heard a talk by a ranger about gators and manatees. We could pick his brain about finding manatees and flamingos (Mrazek, below). We also enjoyed a traveling exhibit table with skull and wood specimens, as well as the knowledge and people skills of the parks worker (I don't think she was a ranger) who not only spooled out her expertise but also handled a couple of rude characters and still left smiles on everyone's faces. She just impressed me and was fun to talk to, which is a common experience with NPS staff.

Mrazek Pond

To reach Mrazek Pond was a half-hour drive. Mrazek is a unique site, the pond lined with birds, scores of them, probably hundreds, including ibises, pelicans, anhingas, egrets, turkey vultures and roseate spoonbills (flamingos). The sights and sounds filled us, and the dozen or so birders who were there in full kit (outdoor wear and chairs, photographic equipment, telescopes, video, computers, etc.), with a thrill that we did not want to end. But the afternoon was getting late.

We learned late in the day about the Anhinga Trail. It was must-see. The daylight was ticking away.

Anhinga Trail

Turns out that the trail is part of Royal Palm Visitor Center, which is all the way back a couple of miles from the park entrance at Ernest S. Coe VC. It was spontaneous: we were making this up as we went along. The drive did not seem that long, but yes, by the time we arrived it was the last minutes before dark. In that light, Royal Palm and its parking lot with spacious ADA slots looked like new, but we headed straight back to the trail, which also was in outstanding shape.

Anhinga really is must-see, especially from a wheelchair. It was a joy taking this thing, a boardwalk built just above a grassy swamp, smooth and straight and flush, with high railings for folks to lean on safely as you look all around you. When we were there the rapidly fading daylight severely compromised what we could see, so we were taking this thing pretty darned fast yet I felt nothing but secure. With the sounds and smells and sensations, it felt like we were in nature here. There were things splashing out there, animals calling, insects waking up to do the night shift. On the next night was a scheduled nighttime flashlight trail program with a ranger to show you exactly what's out there. Wish we could have done it. But we couldn't and we didn't care, we loved it anyway. Anyway, the boardwalk looked and felt new and sturdy and seemed to be built with almost a CCC-type quality, if you know what I mean. Definitely do this during the daytime though.

By the way, Off! repellent totally works. We'd heard there were mosquitos here, and that's no lie. Duh, swamp, right? Anhinga Trail was maybe the second time in my life I'd ever asked for Off! It's hard for me to wash it off, and the critters usually don't fool with me too much: if they do, they get MS. Bah! But on the Anhinga Trail at night, no, mosquitos are another kind of crazy. At least three were eating my face when Mab sprayed me. Saved! It was strange feeling them everywhere around me even if they weren't sinking their fangs. At one point Mab flicked on the mini-flashlight so we could read a sign, and we both gasped. Swirling around my head like a halo was a constellation of frenzied skeeters, trying to break through the force-field. Wow, the things we do in the dark.

And get this: as we were leaving, a minivan was unloading. It was two elderly couples, with both guys in push wheelchairs. They told us it was their second time to Anhinga, it was so good. But they didn't bring bug spray! What?

Anyway, we let them use ours, and then we drove to the camper in the dark. We were going to sleep hard. It was a great day.

Next, Shark Valley and the Ten Thousand Islands.

Roll On

Out on the road, things don't always go as planned...

We took off on a big trip west. It came together quickly. The perfect small travel trailer came on the market, and they don't last long, so we put our money down. It's a toy hauler, meaning the back flips down into a ramp that will be great for the wheelchair, and it's 16 feet long, so it should be OK for us to sleep and eat but still be able to fit in most campgrounds at the national parks which is our goal. The catch is that the toy hauler is all the way on the other side of the country in Arizona, but we've wanted this for a long time, so now the trip is part of our adventure.

The big day comes, and we got a late, late start. We don't travel light: as my health becomes more and more involved, so do the number of suitcases, bags and the like. Stuck with the work as usual, Mab has a hard time planning and packing. What can be packed, and what will still be needed in the morning before we leave? What will we need handy in the car? In the hotel? In the RV? These things frustrate her.

To make things worse, in loading the van, the stacked containers she uses to store the luggage toppled, creating more confusion.

Then when we finally loaded up, the van lift that transfers me from wheelchair to passenger seat had no charge. Sometime during the past week a button had jostled and turned the unit on. So, while we embarked and the lift was charging up, I sat in the back of the van. I'll do this for short trips when it's not worth the hassle of transferring. But being in the back of a cargo van (no windows installed yet) can be a drag, especially during a road trip. The music's garbled, there's no one to talk to and nothing to see. I sit tall, so all I see through the front windows are grass, pavement and sometimes the bottom half of cars and buildings flashing by. So here we are, driving down colorful Route 66, but all I'm getting is Route 33.

But I remembered something Mab has told me about travel, and she's done more than her share. She said that no matter how much you plan, things rarely if ever go exactly according to plan. You've got to be willing to deal with whatever comes up, and roll on to experience your trip. And sure enough, the traveling I've done has gone that way, and so it was today. It's kind of the way you have to be with a disability anyway, willing to roll on.

UPDATE: 48 hours later, we were driving through the desert brush and oil pumps of arid west Texas. We weren't where we were supposed to be: We should have been a couple hundred miles to the north, but we took a wrong turn for Abilene instead of Amarillo, because we were both punchy the night before and they both start with "A." But we rolled on until our newish vehicle with only 15,000 miles on it lost all power on a four-lane interstate. We pulled over on a thin strip of shoulder with loaded oil rigs whipping past on one side, and a steep ditch on the other, so that we were stuck there in 100° heat. Of course it was Sunday afternoon and the roadside services were slow to help.
I have MS, so after two hours in the heat I was seeing Jesus. Jesus was wearing a brown law-enforcement uniform, and turned out to be a sheriff, hallelujah. Big Thanks to him and Nissan Roadside Assistance and to Dale at Westwind Transport of Big Spring, Texas, who towed us to a completely accessible hotel with lovely air-conditioning. Thanks to these guys, the middle of our story has a happy ending.

We were stranded in the hotel until Monday. On Tuesday we lost the room to somebody with reservations. All that day we sat in the lobby, with Hoyer lift and all those bags around us, while we furiously made phone calls to the Nissan warranty garage 100 miles away. (We were waaaay out in nowhere.) It was a little bit exciting where we'd end up.

But long story short, we got the van back and on Tuesday night were back on the road. The rest of the trip was brilliant.

Roll on.