Tags: Barton Cutter, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, vacation
Have you ever had a terrible, horrible, no good, very bad day? Well, we had one crazy week before our vacation.
Monday at 4am we drove to Charlotte to be at a daylong meeting.
Tuesday, 6am: drove home to meet clients for both Megan & I. We got home at 5pm to find Basho, our younger dog, limping. Megan took him to the vet, after x-rays found he would need surgery. Woke up at 1am, trying to decide what to do for him & was less than compassionate toward Megan.
Wednesday: Megan rushed to catch up on work as a construction crew came to repair the foundation of our house. 2pm: ran to the doctor’s office to have my pump refill, 4:30 Megan & I hadn’t eaten all day, picked up a burger & shake. 5pm: five minutes to breathe & eat. 6:30pm: On the way to bed, felt nauseous. 9:30 after 2 1/2 hrs of sleep woke up & got sick. Megan threw me in my bath chair to clean the sheets, wash me off. We decided it was wiser if I slept in my chair tipped back against the wall. 5am woke up cramped from sleeping in my chair but Megan was asleep, so I wasn’t going to say a thing. Woke up every hour for the next four hours.
Construction crew arrived at 9am on Thursday. I slept till 12:30 even after Megan asked me to wake up because she had to leave. 1:15pm: Megan enters “Barton, have you heard the AC. Come out on the back porch.” I go out on the deck & hear what resembles a sub-machine gun on steroids. We turn the AC off. 7pm Megan calls all of our neighbors trying to find someone who has floor fans that we can borrow. 9:30pm friends deliver 2 high-power fans from their office. 10pm sleep maybe.
Friday 6am: the ultimate test chicken noodle soup. It stays down thank God. Trying to rehydrate, pounded an entire liter of Poweraid in less than 5 min. 12pm: the final floor lift. We hold our breath, what else could go wrong? Will we have plumbing? Who knows, and we have to leave. 1pm: Chapel Hill Megan & I present an hour and a half video seminar on self-care for professionals yes, I did say self care. 3:30 Finally get home, I hope our plumbing still works. Only three cracked tiles in the bathroom, and the toilet still flushes. I’m saved. Megan wants to go out for dinner. I still don’t trust my stomach; no way I’m eating real food yet.
Saturday 3am: This morning I wake up on my side and need to roll over. I wake Megan who is irritable because she’s been so sleep deprived. 9am: Wake up have a marvelous conversation with my love while cuddling in bed, up by 10, coffee shop by 10:30, working on the book. 2pm: Home to finish my article, it’s 86 degrees inside the house & we sit on the sofa to do nothing because it’s too hot to move. We survive by eating Italian Ice. Sunset 8:30, Megan & I still have work to do.
Some weeks are like this. We need a vacation. Thank God we got one!!
We returned from vacation to find that Basho had suddenly passed away. To our Wild Child, you brought joy and youthful vitality into our lives, you will be missed!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, Megan Cutter, wheelchairs
This week was turned upside down, literally. I don’t know what it was- the time change, movement in other areas of our lives, but it was one strange week. Monday afternoon, I found Barton at his next computer, unable to move his wheelchair out of position.
All of a sudden, there was a flurry of logistics that had to be altered and calls to the computer repair, and a discussion of what now. Luckily, he was able to get a temporary joystick on Tuesday until we are able to purchase another, a $500 replacement. And we thought we were finally treading above water.
Monday night, however, I woke up in the middle of the night, and in my dream-state, ran head on into Barton’s manual chair sitting in the middle of our bedroom. I thought I had only stubbed the skin off my toe, and went back to sleep without another thought.
Yet, in the morning, I felt a horrible pain in the back of my ribs. In running into Barton’s wheelchair, I had crunched my whole body. I was unable to catch my breath, and every movement just plain hurt. I grabbed an ice pack, and we took extra care in getting Barton up, using a back brace to make sure I was stable. The appointment to my dear neighbor and chiropractor Donna Hedgepeth couldn’t come fast enough, and I’m so appreciative how she was able to move things back into place.
All week, I’ve had to take it slow- move slow, work slow, focus on my body and what I am doing, even if I am sitting at my computer. It’s taught me to be more patient with myself. And Barton took more care too- refusing to let me pick him up if I didn’t have the back brace on.
Now, to be honest, this is not the first time I have run into Barton’s wheelchair. It’s just one of those things. One time, when the weather was gorgeous, we were running together. Barton had the dogs and I was behind him- just trying to keep up. We saw two women who waved and said hello. Barton stopped- and I didn’t- it was a full on impact. I wondered how funny it would have looked to the two women who had gapped at our position, as I almost flew over the top of the handlebars.
I admit, too that I have run Barton into people, waiting in line, not paying attention. It’s easy to do- there’s a whole spacial shift that takes place- with a metal frame and foot petals. Many people ask how Barton can train in martial arts with a wheelchair. Believe it or not, a wheelchair provides many hard and sharp angles, hidden places to wedge an opponent’s foot or arm- and that’s when Barton’s in his wheelchair.
It’s an entirely different issue when the wheelchair is empty, and apparently the opponent is me!
Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, fun, interability marriage, love, Megan Cutter, Work, writing
Yesterday, we spent the afternoon with our beat-up flip camera filming a clip for our Kickstarter Project. Kickstarter is a way to connect funders with projects, and videos bring the story to life. It’s your chance to pitch your story, and communicate what you need. Don’t worry- you’ll hear more about our project in February, when it goes live.
We had a few hours in the afternoon, and we were determined to get out a version we could use. Mind you, we had spent the weekend writing a script, pieces Barton could say, and others I could, overlapping our voices and message together. So, we began by pulling out the script, and Barton had the bright idea of posting it somewhere for us to look at.
Yet, when we began arranging things in our studio, there was no way to post our script without being obvious. So we threw out that idea. Instead, we figured we would just tape as many versions we could and pick out the one we liked the best. Yes, we each had pieces we would say, but we would also jumped if we needed to. And then I got worried about screwing up our quote at the beginning, so Barton started us off right.
The result was a fun afternoon of improv and fits of laughter. Yes, I’m not sure which one of us got the giggles first, but every take after that was cut short; Barton even had me laughing so hard he brought tears to my eyes. When we were done, we were both exhausted, but we had great fun, and hopefully, accomplished what we needed for the project.
So much for being “serious” in front of a camera- but you know, we are who we are!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor, interability marriage, Megan Cutter, technology, Work, writing
Barton and I had spent the morning making revisions and changes to the memoir we are writing, and we returned home to implement these revisions into our working document, and I also had planned an afternoon of catching up on work. I turned on the computer, opened all files, and a few seconds later- it all froze. Frozen- completely.
I pressed the power button, and the computer booted up with a purple and green striped screen, which looked like Christmas wrapping paper, with an error message to reboot, in more than one language. I did try, with the same result- in which case you know not to try anymore otherwise you will hit a high level of frustration just from producing an identical result.
Barton was on the deck with the dogs, and I made a face through the windows. “Honey, we have a problem.”
I turned the computer around so he could see the ‘70’s tv color stripes on the screen. I was determined not to freak out.
The afternoon ensued with preparation in case I had lost all data, and a trip to Apple amongst several hundred Christmas shoppers, to thankfully discover it was a graphic card failure, known to fail, and the repairs would be at no cost. As chaotic as the store was, I was still impressed with their customer service.
Barton mentioned more than once that he was proud of my reaction- a far cry from a few years ago. And when I needed a minute so that I could keep my composure and not get lost in the fear of computer crashes, Barton was gracious enough to give me the space I needed.
Several years ago, with a PC, I was working on an article for the News and Observer North Raleigh News, and interview contacts were in an email by the editor who had sent them just as he was going out of town. I don’t know why, but I had this nightmare that my computer wouldn’t turn on, and well, I must have been on that weird wavelength because I woke up early to find the computer would not power up. 7:00am, and poor Barton woke up to my blood curling scream and hyperventilation. Several trips to Best Buy, $100 data recovery plus repair costs to the power strip- all in early December, and it just happened to be the day the Wii was making its debut. What a nightmare it was.
Even with a calmer response, for a writer, any technical glitch can be frustrating and set one back on their deadlines. More than once I tried to get up “to check my computer,” sitting back down to realize there was nothing to check. I sat with my Tension Tamer tea in hand, realizing that whatever work I thought I was going to get done just went out the window.
I breathed in a mixture of peppermint and chamomile, and pulled out a notebook and pen.
Tags: Barton Cutter, creative play, disability, disability and arts, disability and humor, disability and love, disability and marriage, disability and relationships, disability and visual arts, fun, inclusive arts, inclusive visual arts, play, vision, wheelchairs
Yesterday, Megan and I got bitten by the bug of our own- inner-playfulness. A beautifully bright November Day, we couldn’t help but be outside, and we got the urge to finally pull out an art project, which had been mulling around in the back of our minds for several months.
The ingredients: two tubes of acrylic paint, one roll of brown construction paper, eight heavy-duty 3’x4’ sheets of paper doubling as canvases, one paint pan, one paintbrush, and most importantly, my power chair.
We cleared off a flat spot in our driveway, taped down the construction paper, and proceeded to paint my front tire, which then, served as my painting instrument of choice as I rolled, paint-filled, across the naked white.
It was a blast!
All those years of my childhood, when I drove through water puddle after water puddle and drew designs on the pavement with the wet of my tracks at once exploded into life with new Technicolor intent. My goal- a perfectly straight track mark impeccably placed upon the white canvas. I would roll into position, tire poised at the edge of the canvas as Megan slapped fresh paint onto my newly retreaded tires. And once adequately covered, I would grab my joystick and mimicking a Zen master drawing an enso circle, let out a deep breath and drew back crossing the crisp white canvas blindly.
Canvas after canvas, Megan and I repeated the process like two kindergartners enthralled with their own finger-painting. How wonderful it is to be married to someone who can throw culture to the wind, and get down and dirty with some good, clean fun!
Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability and visual arts, inclusive arts, inclusive visual arts, Megan Cutter, play, wheelchairs
Our art project actually began several months ago as more of a creative and inspirational art project. We decided to go to the craft store together, and adding on a few more errands, I drove while Barton walked. Once arriving and hearing the “I was almost hit by a semi who jumped the sidewalk” story, I was just a little hesitant at whether or not this was worth it. And I was a little hesitant about whether or not we would find what we needed.
It’s not everyday you hear a customer ask, “If we wanted to paint his wheels to create an imprint- what kind of paper and paint would we use?”
While we relaxed over the Thanksgiving holiday and seeped into the fall sun and leaves, we were both inspired yesterday. As Barton mentioned, we hauled out all our supplies to the driveway, picking the square with the least number of cracks and set out everything we needed. As we prepared our canvas, I saw Barton’s excitement rise to the occasion. He was figuring out the perfect angle, timing and method as I was setting everything off to the side.
We did a test run on brown construction paper, and adjusted our methods accordingly. With each print, we scoured over what was the best section and how it fared in comparison with the others. The wind was blowing, and more than once the canvas blew into me- I had paint on my hands, jeans, and feet. Emerging from setting the print down inside the house, I found Barton, giddy over what the next one would produce.
After a while, we created this dance- Barton would move into his exact spot, I would paint the treads, and he would roll backwards by just a fraction. I could complete the splattering. In one movement, he rolled backwards, we assessed the outcome, I would pull of the tape and hold it so it wouldn’t fly into me, find a spot in the house where the dogs couldn’t reach, and emerge to begin the process again. It was a perfect dance.
On the last print, Barton painted the bottom of my foot with the Indigo ink to include a footprint. He held the paintbrush in his mouth, and I sat on the concrete holding my foot in his lap while he brushed on the ink, cold to my toes. As I added my footprint, I felt the same giddiness as Barton.
This was such a different feeling for me. So much of my life has been serious and in some ways I had been unconsciously taught for it to be filled with work- get a job, manage life and deadlines, it should be serious and feel like work. Blah, blah, bah humbug.
But this was amazing- it felt free, and I felt inspired to write and create. I began to shed the adult shackles of crankiness and live into the play I had so much resisted.
Tags: Barton Cutter, daily living, disability and humor, disability and love, disability and marriage, disability and relationships, humor, love, vision
In the midst of the chaos of balancing our current projects with our combined efforts to revamp the vision and focus of our company as well as an unexpected flurry of external distractions over the past several weeks, I’ve noticed my own emotional energies waning in their natural balance and giving way to greater fluctuations in my state of being. In particular, I had felt my natural abundance of laughter being more easily overshadowed by external beliefs and perceptions.
As this has come more fully into awareness, I have made a pointed effort to uncover the laughter and return it to the forefront of my experience. As I’ve done this, I’ve become aware of several significant aspects that have reaffirmed how vital this laughter is for my own state of mind. At the most basic level, I’ve noticed that it’s dispelled minor annoyances allowing a means for my body to process these energies without having them weigh me down.
As a result of this simple form of processing, I’ve also noticed that the laughter forms a basis for stability in the midst of emotionally charged situations, be they self imposed or created by my external environment. This recognition, in turn, has lead to the most profound and vital aspects of how I implement laughter in relationship to those around me.
With this given stability, I have found that I can bring forth this laughter in situations, be they with Megan or anyone else, where the laughter itself opens the space for another person to process their emotional experience openly and safely, without self-judgment and clinging to the experience. Moreover, it also allows me to be present with them without taking responsibility for their emotions.
Need a little laughter in your day? Watch this clip of outtakes from Hattarras Island. Try to be serious!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability and travel, interability marriage, Megan Cutter, travel, traveling with a disability
Last week, we were excited about speaking with a class at the University of Georgia. Yet, the week was full, and we found ourselves cramming in travel, meetings, work and fun. Unbelievably, we left Athens at 4:00am in the morning. Now we didn’t drive in the same way, so when we asked the manager at the front desk how to get back to the interstate to head north, we received very generalized directions.
While we weren’t exactly on empty, we were getting low, and we didn’t realize that the road he directed us to took us toward Atlanta- for oh, about 20 or 30 miles. Now in the middle of this, I began getting antsy. Did we have enough gas? Would this be taking us too far South?
Driving in the dark, on a road in which we were unfamiliar, we both began getting nervous. I got this picture of “the dark and dreary night.” We were going to run out of gas, pull over and get killed in some bizarre situation with an axe murderer.
When we finally found a lone gas station, you would have thought we had run the lottery, except with the high gas prices, it was the other way around. After all of our frustration, we looked at each other and laughed.
Barton saw this tiny sign for 85 North, so we turned onto this tiny road which led us through another 30 miles into nowhere and through little tiny towns. We sure didn’t come this way, but apparently, we were going to find our way home this way. Amazingly, we did make it home alive, and just in time for an afternoon meeting.
We have many travel stories- Barton blames our adventurous travel on me, saying that he never had issues traveling before he met me.
Since we met, we’ve been suck in an airport for three days (the airplane we were in was hit by lightning & had issues with the brakes), drove 11 hours through the same wild storm with tornados, evacuated off Hattaras Island by ferry where we were spending our 5th year anniversary- and had to drive through flooded waters to get to the ferry, and numerous occasions of lost luggage, delays and diversions.
Besides still having anxiety attacks every time I enter an airport, we’ve learned to laugh at the adventures on the road. For sure, I’ve learned to be more flexible and spontaneous. We’ll get there when we get there.
So if you find yourself on the road next to us- good luck, because you’ll probably need it!
Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, interability marriage, love story, Megan Cutter
Last year, we thought we would do something so special for our anniversary. We decided to take a week off (the only week of the year) to celebrate our fifth year anniversary on Hattaras Island. Little did we know that after the second day, we would be in the middle of two storms systems, flooding on both the ocean and sound side, and an eventual evacuation off of the island by ferry. What an adventure!
This year, we wanted to celebrate, but on a little calmer level. It’s a quick drive over to the shore of the North Carolina coastline, so we spent the weekend on much calmer waters. The weather couldn’t have been more delightful- sunny and cool. We parked ourselves on the veranda just in front of the rolling waves for hours.
We found ourselves acknowledging how far we have grown, individually as well as a couple. The last few months, especially, we have found ourselves being more joyful and playful with each other, and coming to a focused vision on where we are headed has created a lot of excitement to keep going, no matter what the obstacles may be.
Over the weekend, we chilled out- took time out of work, home, family, etc. to acknowledge the place where we are and the challenges we have had to overcome. We see each other differently, I would say with more respect and love- there is a reverence for each other deeper than what we have known.
Over the weekend, we did have conversations about some of the changes in our lives over the last six years- from the move to North Carolina to our work, friendships, and individual work that we’ve done. Not all of it has been easy. But we have found this spark that is dynamic and undeniably delightful.
While there aren’t any wild stories this year, we are reminded that we need to take the time out to reflect and celebrate where we are!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability self advocacy, humor, interability marriage, Megan Cutter, wheelchairs
This weekend- I was deemed a healthy cripple. Yesterday we were at the Flyleaf Poetry Reading and Crafts Showcase sponsored by the NC Poetry Society. For most of the event, I had our car parked across the street to allow more parking for customers. However, near the end, I moved the car back, and parking the accessible parking space to load Barton as well as all our stuff. A man was sitting in his parked car next to be, also in an accessible parking space. As I got out, he called out to me, “Well you look like a healthy cripple.”
You look like a healthy cripple. Fascinating. So I went to get Barton, and we ended up having a discussion out by the car about packing up and what we wanted to do for lunch, and I actually left Barton in the car while I packed the car up. I am sure Barton’s smile and bright eyes disturbed the man, so he actually ended up moving to another spot in the lot.
Now I know that accessible parking places in and of itself is a red hot topic which brings out the passion in most advocates, mainly because it’s taken so long to get and enforce parking for those with disabilities.
But let’s look at this man’s comment deeper, and there are two thoughts which I want to pull out a bit.
The first- you look like a healthy cripple. This was a statement about how I looked, on the outside. Should I have explained to him that it was just my husband who has a disability? Should I mention to him that I have chronic back pain? Or that I have low tone hearing loss which can cause balance issues or even worse that it could actually be MS but I refuse to be tested because my mother died from a reaction to pain medication for MS? I looked fine, but many types of disabilities don’t have anything to do with outward appearance at all. Many experiences don’t have outward exposure either, but can be just as debilitating. Let’s give each other a break once in a while. There are times when we need to push ourselves further than we ever could think we could go, and there are times when we need to nurture and take care of ourselves, give ourselves a perk every once in a while.
The second and possibly more potent- you look like a healthy cripple. The inference that people with disabilities are not supposed to look healthy. They are supposed to be unhealthy. It was one of the reasons why I wanted to bring Barton out and have a conversation with him where this man could overhear. Barton, whose muscles don’t work the way he would like them to, is extremely healthy. He doesn’t have cooties. If you could slow down and take the time, you would realize that Barton knows more than you or I. That he’s incredibly funny, and it’s not just his contagious smile. It’s everything underneath.
A long time ago, my martial arts sensei told me a story about Barton. Barton was in a sweat lodge, and there were two boys sitting next to him complaining. Barton bent over, and said, “You can lean on me.”
Breaking through the illusion that you have to be unhealthy to have a disability or be defined by the disability will take a long time to shift. As a society, we are just now coming around to the fact that those with disabilities have just as much, or more, to offer than those without.
How do we begin to shift the paradigm? To let go about our assumptions of how a person with a disability should be, should look or should behave.
At one time or another, we will all be healthy cripples.