Grinding It Out: Two Years Later

Grinding It Out: Two Years Later

“Let’s go for a drive.”

I stifled a laugh at how absurd that sounded. I hadn’t been behind the wheel of a car since July 2015, when my legs started to succumb to the pressure of the tumor in my spine.

But there I was, behind the wheel and getting ready for a driver’s evaluation, just like when I was 16. I had an instructor with a clipboard and an extra brake pedal. The difference this time is that I was about to drive with hand controls. I had about 5 minutes of instruction on how to use them and I was terrified—way more than I was at 16. But off we went from the Shepherd Center parking deck into Buckhead. On a Friday. In the rain.

Today marks two years since my surgery, and like the “terrible twos” of toddlerhood, it’s been a tough but rewarding year of overcoming challenges to become more independent. There have also been a few tears and tantrums.

Life supposedly “begins at 40.” For me, the 40s have been more of a reboot.

Crawling

Remember crawling? I learned how to do that again this year during therapy. Just like the first time around, you have to learn to crawl before you can walk. It was weird to have to think about crawling, but my brain had to tell my legs, “hey, remember this?" My left leg said, “Great!” My right leg said, “Screw you!”

Standing

In January, I was able to stand for a full 30 minutes with a walker. This was a milestone I had promised my therapists before the next round of therapy.  It took weeks of standing every day next to bed in case I fell backward.  When I reached the 30-minute milestone, there were no triumphant yells or fist bumps. I said, “Well, this is boring” and made a mental note to tell the therapists I had reached my goal. The most exciting part of this recovery was letting go of the walker long enough to set the timer on my watch without collapsing in a heap.    

Bathing

In February, I finally took a shower on my own. I was home alone, but I couldn’t wait any longer. I mentally prepared myself for the potential chaos of falling off the shower bench and calling 911 naked except for the Apple Watch on my wrist (hot). The whole showering process took about 90 minutes. Today it takes about 30. I eventually added shaving to the routine. That can be up to 30 extra minutes, depending on how curious Ollie is about the wonders of shaving cream.

Walking

This spring, I started taking a few unsupervised steps with a walker. We’re talking three steps away from the bed—just enough to feel dangerous and exciting. Little by little, I’ve been adding steps. Across the room. Down a hall. During my last round of therapy, I was walking across the entire length of the gym at Shepherd and I heard a therapist say, “Is that Marc? He’s walking!”

Damn right. 

Not fast, but steady and going farther each time. My left leg says, “Great!” My right leg says, “Remember when you ran half marathons? LOL!”

Part of my progress is due to a nifty device called the Bioness L300. It retails for $10,000 but I got it for $900. Thanks, Obama!  It’s basically a brace that sits under my knee and zaps the muscles in my right leg when it’s time to raise my foot. My right leg says, “I’m tired!” The Bioness says “BZZZT. Keep moving, wuss.” And it appears to be working. I can raise my right foot a little without the device and I’m taking steps without it, too. I was also able to climb a small flight of stairs with the device, although I look like I've had six beers.

  

Playing With Others

This spring, I acted in my first sketch show in nearly four years. I wasn’t sure I was ready. Committing to writing sessions and rehearsals takes a lot more time and energy, and I felt pretty tapped out with therapy. And to be honest, I was self-conscious about being in a wheelchair. But then our amazing new artistic director Ryan Archibald said something that stuck: “We’re not going to apologize for it.” I got out of my head and ended up having a blast. Since then, I’ve acted in a second show and directed a third. My stamina is back and I feel like a different person than I did in January. I have smoothing to focus on besides therapy. I have a purpose.

Tears and Tantrums

Despite all my accomplishments this year, the demons of fear, depression and self-doubt whisper in my ears from time to time. I’ve found that they’re less frequent than year one, but when they hit, they hit hard. I wrestle with my life being “less than” it was before. I have a terrible habit of undercutting good experiences in my life with “too bad I’m in a wheelchair.” I still grieve for things I can’t do anymore.  The worst of all is doubting how much more I’ll actually regain physically. I can usually handle day to day inconveniences/indignities of wheelchair living with humor and grace, but there have been times when I shout to the heavens and ask what’s the point of living when the best parts of my life have been stripped away. 

The right leg says, “Wow, this got dark!”

Growing Pains

But after a few hours, or sometimes a few days of wallowing, I’m back to the grind. And it is a grind. 

Slow. Exhausting. Endless. 

I met with my surgeon last week and he reminded me that I had major surgery on the part of the body that’s the slowest to heal. I’ve accomplished a lot, but there’s obviously much more to do. I’m up for it. I have a lot of catching up to do.

I pulled into the Shepherd parking deck exhilarated and exhausted after completing the driving evaluation. 

I passed. 

A toddler going on 16. Driving before walking.

I hope to be driving on my own with hand controls soon, but first I need to somehow buy a car that’s more reliable than my Chevy Cobalt POS. Seriously, it’s more handicapped than I am.

Thank you for reading this and for all of your support. 

Who knows what I’ll accomplish next year.

Marc 

  

Grieving and Grateful: One Year Later

In case you're wondering why I'm in a wheelchair and Facebook's algorithm still hasn't clued you in:

On November 18, 2015 I walked into Emory Midtown Hospital for surgery to remove a large tumor from inside my spine. I had no idea about the grueling journey I had just begun. Sure, I knew the surgery was serious. Every surgeon I consulted said the exact same thing: the spine is "major real estate." And I would imagine that Nicholas Cage meme and think, "How dumb do you think I am?" 

Despite the dire warning, I knew I had one of the best surgeons in the nation for this kind of thing. Dr. Gerald Rodts looks and talks like a 50-ish Robert Redford and he's been around "major real estate" for decades. He said the chance of short term paralysis after the surgery was 30% and permanent paralysis was a scant 1%.

Lucky me?

Here I am a year later and I haven't walked more than three steps at a time. And that's with a walker. The recovery process is much longer and much more difficult than I ever imagined. I felt a mixture of fear and disappointment leading up to today. I've cried bitter tears the past 12 months as I grieved for my former self. I often felt like I died on November 18, 2015 and I'm a broken ghost haunting the remnants of my former life. Nerves are weird, to say the least. There's no guarantee on how much I will recover or how long it will take. 

And yet my main emotions today have been hope and gratitude. My right leg was affected most by the tumor, and two weeks ago, it suddenly regained a bit more mobility. And last week, I finally transferred from my wheelchair into my car without having to use the cumbersome sliding board. Who knows what could happen in six months, next week, or even tomorrow?

I'm thankful for every new accomplishment, no matter how small (tying my shoes, standing for five minutes, doing a load of laundry, not falling naked off the bed like that one time). I'm thankful for every single person I have helping me along this journey (Marnye, family, friends, therapists, doctors, Village Theatre, that one guy who propped up my chair when one of my wheels fell off). I'm thankful this is not the end. I'll keep fighting. I'll keep living the best I can with what I have- an embarrassment of riches of love and support.

        

This Is Spinal Tumor (Six Month Update)

Six months ago today, I had surgery to remove an “aggressive but benign” tumor from the C5 to T3 section of my spinal cord. In other words, most of my neck.  I had expected to be in the hospital a week or two and be hobbling around in time for Christmas. However, the expensive MRI failed to show how extensive the tumor was on the right side of my spinal column. I spent the next two months in the Shepherd Center followed by three weeks of Shepherd’s day program, and now I’m undergoing home therapy twice a week.  I’m not walking yet, but I am starting to stand. In honor of my unexpected medical journey, here are some highlights from the last six months.

·    *  November 25, the worst night of my life.  I recommend not being admitted to the hospital the night before Thanksgiving. The depression is intense. I was strapped onto a gurney and left alone for a few minutes? seconds? in the lobby and I honestly thought I was going to die there.  I was a broken piece of meat stuffed with needles, tubes, and medications. Most heartbreaking of all: I couldn’t figure out the TV remote in my new room.

·      * Watching the Macy’s Thanksgiving Day Parade on Valium is highly recommended.

·      * Nurse: What do you do for fun Me: Improv Nurse: Yeah, we don’t have anything like that here.

·      * Every therapist at Shepherd is attractive. Most of them have seen me naked.

·      * Mike King’s first visit. He was the loudest voice on the entire floor and I love him for it. I’ll never forget his motivational speech about "kicking that tumor's ass."

·      * Gil’s first visit. He broke his hand at home later that night. We compared therapies for weeks.

·      * Mike ran all over town to get flowers and other things for Marnye’s birthday, which we celebrated in the cafeteria.

·      * Playing with Clabo’s new drone in my room on Christmas Eve. The charge nurse came in my room because of all the raucous carrying on. Clabo and Marnye looked like they had been busted by their parents.

·      * While suspended in the air over my hospital bed, I reenacted the ball drop on New Year’s Eve.

·     *  Getting one of the last nude Playboy issues as a gag gift then realizing security had been guarding it for hours before it was delivered to my room.

*+*Belated Christmas with my family. Force Awakens Wrapping Paper.

·      * Video game therapy while playing Rock Band. Our lead singer hated talking let alone singing.

·     *  The realization that a vampy, sultry nurse who sees me naked is good friends with a Village Theatre company member. Hooray for HIPAA!

·     *  Falling onto the floor my first week home. Naked.

·      * Seeing The Force Awakens the last weekend it was in theaters.

·    *  Nearly falling out of my wheelchair onto Ponce twice. The last time was in front of a MARTA bus. The driver shook his head.

·     * Upon seeing my new svelte frame, a friend said, “You look hot except for the wheelchair.”

·      * Returning to Village Theatre for my first improv show in months. I entered/exited the stage on a ramp at a convenient 80- degree angle.

·      * Standing at the kitchen sink with my home therapist. The cat was so intrigued by the excitement, he crawled in the sink.

****Belated Thanksgiving with my VT family.

·      * Figuring out the TV remote.

Have a Holly Jaunty Christmas

And just like that, it's December 1.

Flipping the calendar from November to December was always a big deal to me as a kid. The photo for November is subdued in most calendars, even if the calendar is 12 months of Weimaraners, like the one my grandma displayed in her kitchen. November would be a dog in a scarf, smoking a pipe, or something. December was full-on Santa hat, sleigh, etc. The holiday season started much earlier with my family, but by December 1, everyone is officially allowed to be jaunty.

Because I was the first and only grandchild for quite a while, my grandma went all out in making me two Christmas classics: a stocking and an Advent calendar. A quick glance at the family's stockings was all you'd need to see which one was mine. Stockings for "Mom" "Grandma" "Grandpa" and "Rick" (my uncle) were basic red felt with their names/familial titles written in paltry amounts of green glitter. But the one for "Marc" was something special. Twice the size of standard issue stockings, it was a canvas for my grandma to adorn with a  handmade Santa and snowman. Each was covered in sequins and outlined in electric blue glitter. My name splashed across the top of the stocking in gold glitter like a marquee on Fremont Street.

My grandma made my Advent calendar in a similar motif. Instead of candy, each pocket of the calendar contained a handmade piece of glittered, sequined felt to hang on giant felt Christmas tree.

Some of the pieces make sense, others seem out of place, and a few are insane.

Gingerbread Man-- With two plastic "googly eyes" and no mouth, his tragicomic appearance made it seem like he was there against his will. 

Plane, Train and Car-- Classic symbols of toys beneath the Christmas tree. These usually covered the middle of the tree. 

Stocking-- Not nearly as flashy as my stocking, but very well made for its small size. Usually anchored somewhere on the right side of the tree.  

Holly, Candle, Wreath and Christmas Tree--All of the pieces were well made and have survived 40 years. These were two of the best. I often wondered why you would want an ornament that looked like a Christmas tree on a Christmas tree, but I was too dazzled by its quality to go down the rabbit hole. The tree was always placed toward the bottom  so as not to distract from other pieces. The candle was often placed beneath the Gingerbread Man to torture him.

Star-- A five-point star with a sequin on each point. Three sequins have survived. Always the last piece placed on the tree often with solemnity. 

Drum-- A classic symbol marred by questionable color choices. Pink and lime green? I'm guessing grandma was running out of felt or wished I was a girl.

Angel, Santa and Rudolph-- This trifecta always appeared in the last week before Christmas. They always occupied the coveted top of the tree just under the star. Rudolph was always under Santa and the angel. The angel was always on the right side of the tree, my reason being that God would want her there, and to mess with that might jeopardize presents from Santa. The angel lost her sequined eyes in the 90s and now has a certain gravitas about her. I suppose grandma didn't want to mess with the potential spiritual implications of giving an angel "googly eyes." Or she may have just run out.  

Rudolph was very mature-looking. A five-point buck with a red nose that didn't fit his majestic profile. He also had a sequin for an eye. A googly eye may have been too much embarrassment for him.

Partridge-- I was about 20 before I knew what this was. It's yellow and a bit abstract. I'm assuming grandma had to cut around "C'mon Get Happy" to make it.

Pig, Fish and Butterfly-- I think grandma started to run out of ideas here. Pig and fish may be tangentially conected to Christmas. Pig by the manger? Fish as the symbol for Christianity? Either way, bonus points for originality and "googly eyes."  I never knew quite where to put the butterfly. It was made from the same felt as the partridge. Grandma probably had to cut around a logo for a 70s nursery or organic co-op to make it. 

Apple-- Nod to Adam & Eve? Well made, but often one of the first pieces to get out of the way the first week of December.

Valentine Heart-- Sigh. Placed off to the side of the tree on December 2 or 3. 

Brown Mushroom-- ??? 

Pink Mushroom- !!!!   The same shape as a magic mushroom with colorful metallic leaves glued on it. I'm not sure what was happening. Did grandma see something I didn't? Does it explain all the sequins, glitter and googly eyes?

Unidentified Pink Amorphous Blob and Unidentified White Amorphous Blob-- You know, we had a Lava Lamp on our TV.  Were Lawrence Welk and sleep deprivation involved? So many questions...

I've forgotten what the last piece is and I'm looking forward to finding out when I pull the calendar out of storage this week. Will it be a classic Christmas symbol? Or an unintended reference to Timothy Leary?  

At any rate, it's December so tune in, drop out, tear open (the shutters) and throw up (the sash). 

  

A Fortnight To 40

HAHAHAHA!!!!

Day 3: Manitou Springs, CO to Durango, CO

Manitou Springs is like Gatlinburg. Instead of the Smokeys, you're in the front range of the Rockies. Instead of fudge and religious t-shirts, you have tattoos and weed t-shirts. The big attraction is the Pikes Peak Cog Railroad, which takes you all the way up the mountain in about 90 minutes, then allows you about 10 seconds to eat, use the bathroom, take photos and update your Facebook status. As my uncle predicted in line, we were seated next to the three most misbehaved kids on the train. They formed a fugue with the conductor which went something like:

"The Cog Railroad was invented by..."

"I'M BORED!"

"Pike's Peak is home to marmots, big horn sheep...'

'I WANT TO SEE A TARANTULA!"

"Katharine Lee Bates was inspired to write 'America The Beautiful' after riding up Pikes Peak..."

"I SMELL FRENCH FRIES!"

The rest of the day was an epic road trip in itself. First, we went up to the Cripple Creek area to visit an old friend: Phantom Canyon Rd. This is the kind of road you can only find in Colorado. It twists and turns for about 25 miles down to Canon City--the armpit of the state. The speed limit is seldom above 20 mph and road signs along the way include "NARROW BRIDGE"  "PRIVATE PROPERTY" and my favorite, "FREE RANGE."  You go through two tunnels and by the time you hit the end of Phantom Canyon,  your butt is numb, but a little disappointed to be on pavement again. 

Whether it was a GPS hiccup or post-Phantom delirium, we drove a circuitous route to Pueblo before heading over to the Great Sand Dunes. We were only in Pueblo a few minutes, but the most exciting part of that journey was avoiding a U-Haul that had swerved into my lane. If Canon City is Colorado's armpit, maybe Pueblo is the appendix.

The Great Sand Dunes may supplant White Sands, New Mexico as my favorite place in the U.S. The dunes are formed by wind that carries sand from one set of mountains, but can't get it over the second set. Or something like that. The dunes look like they have no business being there and they are awesome. The beauty and the stillness made me feel giddy--the same feeling I had the last time I saw White Sands when I was five. 

I took as many photos as I could and a stranger kindly took a group photo of all of us. The stranger was from Cincinnati and didn't bat an eye when we did our O-H-I-O pose. He also didn't shut up. He was pontificating about Vietnam and other topics when we nodded and shuffled away from him.  Kind of hard to make a graceful exit when you're in the middle of nowhere.

The Adventure Van then took us from nowhere to nightmare along a stretch of Highway 160, now forever dubbed "White Knuckle 160." I've been in some nastiness. I live in Atlanta. But this was a different level. This was Nature. We were later than planned, so it was getting dark. OK. The road was twisty up into Wolf Pass. OK. Deer. OK. More deer. Uh, OK. More deer. DID THEY JUST MOVE TOWARD US?! (Brake. Swerve. GLOWING YELLOW EYES.) Rain. Dammit. Lightning. #$%^ my life. There were so many road hazards at once, it was like we were on a test track for Toyota. I gripped the passenger door as my uncle piloted The Adventure Van through the chaos. I sang along to Tom Petty, James Taylor and other mellow rockers on Sirius XM. I focused on the GPS. The reassuring "Mandy" was nowhere to be heard. The miles went down achingly slow. And then, we came across the gaudiest road warning I've ever seen. Six flashing yellow arrows pointing left with dots of red and God knows what else. It was like a casino sign on Fremont Street. All it needed was a neon Grim Reaper waving a scythe. 

We finally made it to Durango, where we passed a sign for a hotel that advertised "Hot Tub and 420 friendly." Our rooms at the Travel Lodge were not that special. The pillows felt like paper and the bathroom, with its shower chair,  looked like an ad from AARP Magazine.

Three stars.

Five stars for being alive.

 

  

 

    

Day 2: Topeka, KS to Manitou Springs, CO

Kansas is a land of sighs and yawns when you’re driving through it.  As the fields roll by, the yawns get longer and the sighs get heavier as you wonder whether you’ll ever escape this purgatory of landscapes.  Kansas is actually kinda pretty, or as my uncle put it, “Not as ugly as I thought it would be.” The problem is, Kansas changes very little as you head west. The scenery feels like it’s on one of those screens used in old cowboy movies to simulate motion. You swear you see the same field/horse/fence combo over and over. By the time we got to the windmills,  we were so desperate for something new, our excitement was like seeing  the New York skyline for the first time.  Or a unicorn.

But even windmills got old after a couple of minutes. Highway hypnosis set in. The Adventure Van seemed more like a surfboard gently bobbing on an ocean of grass. Speaking of grass, Diane’s daughter called her asking if she was going to “smoke dope” in Colorado. At one point Diane corrected her daughter, saying the “dope” was not “free” but merely “legal.”

Sigh. Free weed. There’s a thought exercise.

Conversations kept  us from complete boredom/madness and I learned something new: my mom was married on a national day of mourning for Bobby Kennedy.

Sigh. National day of mourning. There’s an omen .

A couple of glitches in the visual Matrix gave two odd billboards advertising the “world’s largest Czech egg” and “the 2^nd friendliest yarn store in the universe.”

So many questions, so little cell service to seek answers.

We pulled into a Dairy Queen where things when from odd to sinister. Just like a cowboy movie, we open the door and suddenly the locals stopped what they were doing to check out the strangers. Women in Mennonite? Clothes were running the counter and lounging around. The lead cashier smiled through tight thin lips and stared at me with cold unblinking eyes. The lead cook had holsters containing what looked like a Taser and a Bible. Off in the corner, an old rancher with a broken arm appeared to be running a meeting that we might have interrupted. We ate in unease and saddled up The Adventure Van, finally making it to Colorado.

Sigh of relief. Colorado. Hey, it looks like Kansas.

We pulled into Manitou Springs, where a hotel snafu forced my uncle and I to stay at a different hotel than mom and Diane. They stayed at the Magnuson Hotel. Uncle and I stayed at the Silver Saddle.

Diane said the room was nice enough but “smelled like natural gas.”

Three stars.

The Silver Saddle surprised us by be extra clean and having an extra bedroom.

Uncle: “The owner was nice.”

Four stars.