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: 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, 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 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.
Tags: Barton Cutter, disability and relationships, disability self advocacy, disabled self defense, humor, interability marriage, self defense for people with disabilities
What a night Saturday was! I certainly did not expect to be shifting from engaging in a casual conversation with someone at the bar to making sure he couldn’t do damage to anyone in the crowd, least of all himself. It just happened to work out that way for some reason.
Those who know us are aware that a village pub isn’t exactly what we would consider a typical hangout but since our friends were playing we thought it would be a nice change of pace. When we got there it was nearing 11 and a number of patrons had clearly already had their share to drink. After we got settled at the front of the bar, close to where the band was set up, a man close to me struck up a conversation.
At first I found this interesting as it was clear that despite his blood/alcohol level, there was some genuine interest in talking. After all, I suppose it’s not every day that you see two guys in wheelchairs roll into a bar. I was open to chatting and was pretty impressed at how well he understood me. As he began to talk more, it became apparent that he needed someone to listen and I was happy to do so since I saw this as a healthier option for him than pouring more alcohol on top of his troubles. Soon, however, it was obvious that things were beginning to shift.
As soon as he turned back to his buddies, he downed another beer before trying to reengage. This happened several times, and with each, he became increasingly dangerous to himself and those around him. I was done. It was clear that he had no interest in the opportunity I was offering. He began to stumble aimlessly trying to get others to dance with him. As he began knocking into others, including those on stage, I began creating distance between him and where we were sitting in order to protect Megan and our two friends. In a final attempt to engage us, he extended his hand over my head to ask Megan to dance. Realizing that Megan did not fully grasp what he was asking in the moment, I playfully interrupted the line he was extending by gently redirecting his arm, and intent, with a friendly nudge and glance.
While this ended his attempts to engage with us directly, he was still way off kilter and on the verge of toppling over. From where we sat, however, our friends could not safely navigate to an exit and so my next task was to keep them from being trampled upon. By the end of the show, the guy’s friends had contained him somewhat. And that, combined with my capacity to serve as designated linebacker allowed us to open a safe path to the door for our friends.
Tags: disability, disability and humor, disability and love, disability and marriage, disability and relationships, fun, humor, interability marriage, Megan Cutter
The headline might be out of a tabloid, or maybe from our own crazy lives. Barton told his side of this story during a Toastmasters Humorist Competition last week, and I was sitting on the sidelines biting my tongue because- oh, I so wanted to tell my version. So here it is:
It had not been that long since we moved to our new house, and I was still getting acclimated to the streets, directions, where we were in relation other places in the community. Barton had a meeting that day, which I knew about, and he had taken the bus, as usual.
So I was puzzled when Barton called asking me for directions on how to get home. Apparently he decided to walk home instead of waiting for the bus, and he took the Greenway, a set of sidewalks through parks that runs through Raleigh. However, the Greenway had not connected where he thought and he was stuck in this neighborhood going around in circles.
Now I am directionally challenged- when I was a teenager, once I got lost on one-way streets in downtown Atlanta & it took me an hour to find myself out. All I can say is- thank God for GPS systems. But in this case, I had to break out a map- actually find the cross street to find where Barton was and how I could get there, which took some time.
I did look outside at one point to see the bright summer sky turn ominous and dark as I was getting into the car- just then, as the bottom fell out. Another call. A neighbor had called to tell me Barton was no standing in the rain and was drenched, of which I knew. When I arrived- they were holding an little umbrella over him, trying to keep him dry, which was not working at all. Now the only point to keeping Barton’s wheelchair dry is that when it gets wet, it could have problems, but Barton out in the rain- he would play all day, so it apparently bothered the neighbors more than it bothered Barton. We were both soaked through. (This isn’t the first time Barton got both of us caught outside walking in the rain, nor the last.)
Another neighbor drove by who had a truck, but Barton’s wheelchair weighs about 200 pounds- it’s not something anyone could manhandle. Now there is a group of people all huddled around Barton trying to figure out how to get the wheelchair in the truck. So I drove back home- by this time the rain was coming down in sheets. I put the two pieces of the metal ramp in the back of the car thinking there was enough room if I put them inside on the back seat diagonally.
Only to find that the back window could not hold the pressure and literally shattered when I closed the door. So now Barton’s still in the rain with neighbors holding an umbrella over him and I am cleaning up tiny pieces of broken glass from the ground, inside the car, it was everywhere- all in the torrential downpour.
By the time I got back to where Barton was, the rain had stopped and the sun was shining, and he decided to walk home, but he still had to follow me out of the windy neighborhood- which was a good thing since all of this chaos happened because he was impatient and didn’t want to wait on the bus.
Tags: Barton Cutter, fun, humor, recreation, time together
Last weekend, Megan and I went swimming together for the first time in who knows how long. It felt absolutely wonderful, not only because we had the chance to do something we both love and enjoy each other’s company at the same time, but also because neither of us has had the chance to swim in a while. Heck, I don’t think I’ve been in a pool since before we were married!
I’ve always loved the water, as does Megan, and though we’ve talked on numerous occasions about finding the time to swim together, this is the first time it actually happened.
We arrived at the pool with the intention of both of us swimming laps. We decided that it was likely best that Megan swim first; that way, I wouldn’t be sitting on the side of the pool cold, wet, and itching to go. After about a half an hour, Megan finished her workout and it was my turn to dive in, well, ok…
it was more of a slow submergence with the help of a chair lift but the truth is that I would have been much happier diving in. Anyway, once I was in the pool it took us a while to find the right depth, which is usually around five feet for me, and for me to remind Megan what I needed to help me swim. But after this was sorted out, I was off in a splash.
I’ve always wondered how it must look from someone else’s prospective when I swim as, the way I go about it is to have whoever is assisting me drop me. From there, dogpaddle a bit, which must look like a drowning rat attempting to wrestle an angry sea creature and losing miserably. Then as I find the need to take a breath, I drop to the bottom and push off the floor with my feet with enough force to thrust my entire upper torso into the air, fill my lungs, and start the process over.
Now, I used to have this refined to the point that I could swim a mile and a half with this method but after five years or more, I found myself gasping after only one lap. I can’t wait to go again!
Tags: daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, humor
This morning, I was telling a story about kitchen disasters to Barton’s morning assistant as Barton & I ate breakfast. Two years ago, Barton had surgery to replace his Baclofen pump (a story in & of itself) since it had been “recommended for replacement” based on a piece of the motor that could stop working properly. A nice way to avoid the word recall. Barton decided to have surgery around the holidays to avoid missing workdays, and thankfully, we were home the day before Christmas.
Since I had missed making Christmas gifts or sending out holiday cards, Christmas morning, I was inspired to get into the holiday spirit by making praline pecans. Barton was already up, but unfortunately still not feeling well due to the lingering effects of anesthesia & the surgery.
I had always used the same bowl to make praline pecans, and in my normal routine, took out the blue plastic bowl and filled it with butters and brown sugar, sticking in the microwave. Our microwave sits just over the stove & oven, so I have to reach up to take anything in/out.
When the timer went off, I lifted the bowl up to pull it out of the microwave, but the bottom of the bowl had melted, leaving the plastic bottom, as well of the contents, into a liquid goo, filling the bottom of the microwave spilling over, dripping down onto the stovetop and down the side of the oven to the floor below.
Of course I was freaking out, and Barton, on the other side of the house, couldn’t figure out what was wrong- obviously the expletives were a little louder than I had realized. This was another America’s Funniest Home Video moment. If only we had had a video camera rolling.
The rest of Christmas morning was spent cleaning up the mess before it hardened into praline plastic candy. Trust me- scraping out the microwave on Christmas morning was no fun.
I admit, I’m not the greatest in the kitchen & prefer to stick to the simpler dishes than an exquisite cuisine. But Barton has his share of food mishaps as well. There’s a reason we have two black labs who both vacuum the floors with their tongues.
Between the two of us, in the manuscript we are working on, there is a whole chapter devoted to the cooking & meal comedy of errors that we tend to play out. It’s great that humor plays such an important part of our lives- trust me, we add quite a bit on our own.
We’ve gotten used to the kitchen mishaps, and Barton has actually broken me out of my shell, as I begin to explore with dishes and spices that aren’t necessarily called for in the recipe.
Still, there is plenty of room for error…