Tags: daily living, disability and love, disability and marriage, disability and relationships, household chores, interability marriage, love, Megan Cutter, time together, vision
One of my mentors talked to me about how as creative peoples, we have a tendency to go until we drop, especially when we get inspired. It happens to me when I get on a writing kick- I’ll wake up at 2am, writing before a full day of work, and find myself crashing the next day at six or seven in the evening or I get so wound up I can’t go to sleep. I feel that if I don’t get it down on paper at that moment, it’s gone.
And I mentioned about how- no matter how early I get up, ten minutes before I leave the house, I tear through every room finding keys, papers, notebooks, lesson plans, phone, books. There may be times when I am working on two lists- what I need for the day and what Barton needs for the day.
I was reminded to slow down, on a couple of fronts. To prepare for the next day, not just in logistics, but also in projects. I noticed a huge shift when I found myself ten minutes late, and I was not freaking out at all. I moved from one place to another, and I found myself actually on time for the event.
I’ve also felt like I’ve planned projects out better, giving myself enough time to complete them, and while nothing seems to go as I fully expect, I’m able to adapt to necessary changes in flow or needs.
Yet, I’ve completely resisted the notion of slowing down that I know will smooth the day out even more. During this time of planning multiple events, creating new brochures and working on the best ways to reach new youth and families, I’ve been itching to get to the to-do list. It all seems to go too slowly for my racing mind.
On the days when Barton & I have worked together, we’ve been focused and while we may have only gotten one item off of the long list, we know that we’ve done it well, and that has been a great feeling.
Tags: Barton Cutter, daily living, disability and love, disability and marriage, disability and relationships, gratitude, household chores, vision, Work
It’s amazing to me how growth comes. Recently, Megan and I caught the inspiration to reorganize our house to make space for a creativity studio. This studio, as we envision it, is intended to be as shared space where the two of us can work together, see clients, and serve as a room for creative play as we build our new business. In only a weekend Megan had excavated our dining room, and embarked on designing the space to meet its new destiny.
It soon adorned a padded floor, a comfy arm chair fit for coaching clients, bookshelves filled with games and children’s books fit for a range of ages and desk waiting to support a range of creative projects. In the process, we found ourselves not only re-evaluating the space for this room individually, but we also began to examine how we were utilizing space throughout our house and the further we explored the greater transformation took place.
As we assessed each furniture item for the purpose it served our family, we noticed that our relationship to it shifted as we assessed it in relation to a new vision for our lives, both as a family and as business partners. As Megan, in particular, went through items associated with her family’s history, I noticed that there was a clear shift in her priorities, which, to be honest, amazed and excited me.
I have always been one to hold a deep value of open spaces and utility in my personal possessions, and many times, I have been somewhat extremist in my drive to eliminate the unnecessary. Megan, however, grew up with what I understand to be a different set of values in which the sentimental value of an item was highly prized and therefore justified its place within her space. Because of this, I have learned over time to curb my urge to purge.
You can imagine my amazement then, when it was she who went on a purging spree. At first, I was somewhat hesitant to join her, and in fact at the beginning of the process, I was the one making sure that nothing got purged that she would later regret. Yet, as we went through the process and I gained confidence in her vision and commitment, we both had a great deal of fun getting rid of what was outside of our new vision. What emerged from this process was quite unbelievable. Virtually every room in our house was transformed into an open and spacious environment.
I knew that, at the completion of this transformation, this offered us far more than either of us had imagined when Megan commented, “I can finally feel our house breathing again.”
Tags: daily living, disability and love, disability and marriage, disability and relationships, household chores, Megan Cutter, vision, Work
About two months ago, I was looking at our dining room, filled with my mother’s dining room table, china cabinet, two bookcases and chairs. The black lamp covers sat on top of chandelier lights, untouched since we had moved into our house. I always thought that the room just looked dark and cramped. Unfortunately, the dining room table was used for sorting mail, the file pile and organizing receipts for taxes. I knew that we needed to change this space, but I just didn’t know how. I etched a small list hidden in the corner on our bulletin board in the kitchen that held a glint of the vision I held.
Several weeks ago, Barton was away for the weekend at a seminar, and I couldn’t help it- I went into overdrive. I moved all of the furniture out of the dining room, stacks of books piled high on the table now in the middle of the living room. By the time Barton came home, I had changed the covers on the chandelier lights and figured out how to raise them, set down carpet padding and two layers of canvas tarp in the empty room. I had exhausted myself, more than once, moving heavy furniture and piles of books all on my own.
After Barton had seen and approved the initial transformation (as there was no way I was moving it all back), I stapled down the carpet padding and canvas- hopefully to avoid the grinding and tangling under Barton’s wheelchair.
I also decided that I was ready to let go of my mother’s dining room table and china cabinet. In the weeks that followed, it became less about the physical furniture and more about the ability to claim myself, who I am and what space I need to create, work, function, thrive. For others, this may be a simple task, but to me, it was a huge leap.
For years as a child I would switch from my mother’s house to my father’s house, with separate clothes, beds, animals, separate lives. It wasn’t until college that I even considered the idea of having my own space, and later after my mother passed away, realizing that it was okay to move the furniture out of its place. This current overhaul is just the next evolution. It required me to let go of having a “normal” house.
My father and stepmother love to host parties at their house, a room full of family or guests around their dining room table. We’d love to do the same, but frankly it never happens that way. Typically, we go to others for a social engagement, and when we do have guests over, I have to explain that coffee tables and chairs just get in the way or the dogs just tore a hole in the futon. So we sit outside on our back porch enjoying the pine trees at dusk.
During this most recent transformation, Barton was amazed as I was able to let go of some additional pieces that I was adamant about holding onto, and we even moved the bedroom around.
The last few days, we’ve walked through the house amazed at the light and spaciousness that we both feel. There’s more work to do, as one day, I’ll be brave enough to splatter paint the canvas floor covering. Until then, we’ll revel in enjoyment in this newly discovered space.
Tags: community, daily living, disability and love, disability and marriage, disability and relationships, household chores, interability marriage, Megan Cutter, wheelchairs
This weekend, we took the plunge- we had a no-hole fix-it repair weekend. We have always laughed about the holes and dents in the drywall from Barton’s wheelchair. Every one has a story behind them and trust me we keep count of who makes each dent and hole in the hallway- a source of constant chiding, but it was time to repair the damage.
What a whirlwind of an afternoon, and we were so grateful to have help, as I couldn’t have done these projects alone. From taking the doorframe off to the office, spackling dents and dings in the hallway and bedroom, installing a new smoke alarm, yard work, installing a new blind, painting little items here and there, tacking up installation that had fallen under the house, we crossed off a number of repair items that had been on the list for quite a while.
Afterwards, as Barton and I crashed on the sofa, we felt as though we had just had an Extreme Makeover Day, and we had. These were projects that were on the list, but so many other priorities have taken precedence. Especially as we have been shifting the focus of our vision and mission, moving into new areas of work and exploring new possibilities. Yet, going back to take care of these items is necessary, and part not only of home-ownership, but of preventing future damage and cost.
So often, you hear the term work-life balance. How do you balance all of these aspects to our lives- work, family, home, volunteer/service, relaxation and rest? I haven’t quite figured it out yet, but I love how poet David Whyte talks about these aspects of our lives in conversation with one or another. It’s not either or, but rather how they overlap and interweave throughout our lives.
What I loved about our no-hole repair day was not that it was just marking items off a list, but that it brought pieces of our community together. We met new neighbors and spent a lot of time getting to know them, we laughed with other neighbors about inside stories they knew, and we reconnected with a family we had not seen in a while. A little boy and girl helped me carry brush out to a pile we made in the yard teaching them about helping others, and there were extra pairs of hands accomplishing items we could not have done alone.
What can we accomplish with the help of others? I’ve been known to have an, “I can do…” attitude, which on one hand is important to be determined and persevere, but on the other leaves out the potential to succeed as a communal effort. Community is important, and I’ve found that there are different communities for different parts of my life.
This ties directly in with finding a support system or network, which can be found in a variety of places- neighborhood, spiritual or religious based, organizationally or interest-based. It’s easy to say, “I’m so alone. No one has been here, done this, experienced this…” Yet, in this day, we all have experienced the changes due to volatile economic times, we all in one time of our lives or another will experience a loss or tragedy, as well as the joy of success.
What do you need to accomplish with an extra-pair of hands? Gather some friends together, tell them what you need and see what the possibilities are. You may be amazed at what can happen.
Tags: daily living, disability and marriage, disability and relationships, disability self advocacy, household chores, Megan Cutter, personal assistants, personal care assistants, self advocacy
So today was not a fun day. We had to have a discussion with Barton’s morning personal care assistant, and in the end, we parted ways. It’s a bittersweet decision because we had worked so hard to get morning help to begin with, but we found that some underlying issues to be too detrimental to our household to continue.
Since being with Barton, we have only had to let go of help maybe two times. The first was a little more light-hearted since we had hired a student from the University who couldn’t get out of bed until 11am in the morning. The final straw was the beans incident. In a condensed version, I came home to a sink brimming with black murky water and the overpowering smell of Draino. A few days earlier, he had made Barton not one helping of black beans, but the whole bag of black beans. Yes, it was my mistake to be running late for lunch, leaving the container of beans on the counter. Apparently, Barton’s assistant dumped the entire pound of black beans into the garbage disposal. Now, what do you think happens to beans and water in a drainpipe? Just a note, if you try this at home, we are not responsible for the repair to your own drainpipes. Then, to “fix” the clogged pipes, he poured a whole bottle of Draino in the sink, and I’m wondering if it was just for spite, he turned the dishwasher on before he left!
Today’s discussion was a bit more on the serious, and we realized there were some subtle underlying issues that began to create a rift. We had finally found someone who had been in the field for a long time, and was experienced in a hospital, group home and residential home settings. We walked through the normal questions and a modeled the routine of the day. She was on one train of thought, with a specific type of care for Barton, usually working with someone that has a care provider.
But how do you integrate that work into the household that includes both of us, especially when we are working to break down the notion that I am Barton’s care provider? On the first day, Barton was so excited because he wanted to make me breakfast, but was told she was there only to take care of him. How could he communicate that there were things he wanted to do to take care of the household or me, as his wife, but needed some extra assistance in doing so? While we didn’t specifically address the times when Barton would want to include helping me with the household chores, we found the personal care assistant to be inflexible at even the smallest request. Barton tried to explain that I was his wife, not his mother or caretaker, and while the acknowledgement was there, the action didn’t really change.
Not only that, but Barton was feeling more and more like he was losing his voice about how he wanted things done, and that frustrated him because we were in our house. He likes is showers short in a particular way, and like most guys, hate it when other people dote on him. However, his assistant had a particular way as well, and they didn’t quite jive. At the same time, my best writing comes out in the morning, but getting interrupted to get this or that, I was quickly losing focus. I almost felt like I needed to leave our house just to get one thing accomplished. And we didn’t realize how we missed eating breakfast together- it was an important part of starting off the day.
Slowly, I noticed Barton was getting irritated and I was getting frustrated, and pretty soon, the rift was large enough for us to see. I am sure that from a personal care assistant’s perspective, it’s difficult to work with a married couple because the lines blur between working for the individual and working for the couple.
There aren’t any simple answers. Only the ones that come with trial and error, experience, communication, learning, and we’re still just rolling along in that process!
Tags: daily living, disability, disability and marriage, disability and relationships, household chores, Megan Cutter
We’ve gotten several questions on how we’ve managed during this economically difficult time, what challenges we’ve faced and what changes we’ve had to make. Barton and I are lucky in that we own our own business, and our overhead costs are very little, and fact, we’ve seen a growth in our business exponentially.
Our biggest challenge by far: medical costs. Both Barton and I have had some major medical expenses- Barton just got his brand new wheelchair and his refill for an intrethecal Baclofin pump isn’t cheap, and I had a mole removed by my dermatologist. While we both have health insurance, we do have very high deductibles, so our challenge is to make enough to cover our medical costs.
Barton’s help quit last July, so since that time, I’ve taken over the morning routine. Now, I don’t really mind it (because it gives me more time with Barton) except for a couple of things- morning is my best writing time, so I’ve had to adjust my work schedule, and I do have to watch my energy level to make sure I’m getting enough sleep to wake up in time to get us both ready for the day, which can be quite early. It’s important for both Barton and I that the roles between wife and caretaker are different, so eventually we’ll get back to morning help, but for the time being, we can’t justify that expense.
Like everyone else, we’ve been eating out less; I’m definitely on the search for new crock-pot recipes. We’ve also been watching our mileage. We’ve been used to driving long distances, and the last year we’ve really cut back on driving. One benefit of this transition has been to know and use the local resources in our community. For Barton- it’s really important that he figures out our neighbors who can help him out if I’m not around. While we have many friends a ways off, it’s been important on so many different levels to make connections and get to know our neighbors in our own community.
When we were looking at celebrating our fifth-year anniversary this November, we originally had planned to go back down to Longboat Key, Florida where we spent our honeymoon, but we realized that the transportation cost by air & car, food & hotel- just wasn’t worth it. Don’t worry, we’re still celebrating- a rental house on the Outerbanks where we can take our dogs with us, make our own meals & enjoy a glass of wine overlooking the ocean will suit us just fine (and I’m sure we’ll splurge with at least one night out).
So while we have made some drastic changes, we are creating more opportunities, looking at the infinite possibilities of each day, remaining positive (turn the tv off if you haven’t already!) and thankful that we have each other.
Tags: daily living, disability, disability and marriage, disability and relationships, household chores, Megan Cutter, wheelchairs
I completely admit, the first time I drove Barton’s wheelchair in Arizona, I tore off his bedroom door at his apartment, and I admit when we moved into our new house, I got his wheelchair stuck in the bathroom doorway for over twenty minutes with us still inside. But I’m not responsible for all the damage in the house from Barton’s wheelchair.
In fact, Barton and I have dibs on who makes the most dents in the hallway walls. Our hallway is speckled with dents, scrapes and patches of white spackle where we’ve repaired the larger crash damage.
For now, we’ve taken three doors out and ripped off the trim, making our 1960’s house as accessible as possible. It’s not pretty, but it’s functional. There’s a black scuffmark ring around the entire house where Barton has scraped his boots against the wall or door or the handlebars on the closet door. Yes, I have harped, to no avail, on the dents on the oven, couch or bed when he uses them to shift his weight back in the wheelchair.
And how many times do I have to remind Barton not to let the dogs sit in his lap with the wheelchair still on! (Oh, the fun of a dog-driven wheelchair)
While it’s wonderful to dream that Extreme Home Makeover would rebuild a glamorous accessible house with plenty of room, we realize that most likely that will never happen. So we pick one big project a year to tackle.
Obviously when we moved in, a solid ramp was priority number one. And when our work schedules shifted, we had an electric lock installed. Still on the list: expanding the doorways, renovating the bathroom… – it’s a long list.
Tags: Barton Cutter, disability, disability and marriage, disability and relationships, household chores, wheelchairs
So, I have to admit that for the most part, Megan is correct, I do tend to track a lot of mud throughout the house. Don’t tell Megan this, but part of me really enjoys it because I know it gets her goat. I do, however, pull my own weight in terms of chores. One of the benefits to using a powerchair is that I can and often do haul as much or more than my body weight.
Eight grocery bags at once… no problem. Entire wheel barrows of yard waste… no sweat. Rolls of living room carpeting… come on. Give me a challenge! While Megan does take on much of the smaller tasks around the house, we tackle bigger projects together, and I’m sure her back is very grateful.
As for the mud, what can I say? My chair is like a barnyard animal- it’s meant to work hard and every so often, it can’t resist a good puddle of mud.
Tags: daily living, disability, disability and marriage, disability and relationships, household chores, Megan Cutter, wheelchairs
When I look at household chores, yes, for the most part I take them on, but don’t be fooled, Barton takes on quite a bit, too. We live within walking distance to a shopping mall, which has everything we need- bank, grocery store, post office. So there are many times when I will send Barton to run errands. And Barton always meets me in the driveway to bring groceries into the house.
While I may be the hands of doing physical house or yard work, Barton is usually right there advising me on the best way to get it done, especially when it comes to yard work.
So there is one thing that does irk me about housework: they’re called wheelchair tires. While manual wheelchairs have smooth tires, which are somewhat thin, motor wheelchairs have real tires, treads and all. And if you know Barton, he can’t stand to stay on pavement. It’s really gross when he gets stuck in the mud after it’s rained- grass, wet mud and dirt is caked all over the tires & wheelchair. And then he comes in the house- usually just after I’ve swept or vacuumed. Never fails. I can always tell when Barton’s been off-roading. There are tire tracks with bits of mud or dirt trailing through the house. We also have two Labrador Retrievers so multiply the wheelchair tracks by two sets of doggie paws, and you’re in for a whole mess.
It’s taken a while, but I don’t have a fit anymore- dare say that I may even wait to clean it up the dirt tracks down the hallway. I’ve learned to let go (okay, okay, still learning) of needing everything to be obsessively clean. Eventually, the dirt trails get swept or washed away until the next rainfall.
So we don’t have the most pristine house. So what. Our house has character.
Did I mention the dents in the walls? Oh, maybe next time.