Tags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, interability marriage
Until recently, I have always taken pride in my ability to push through whatever physical issues I may be going through personally in order to be there for others in whatever form they need me. In fact, in many ways, this has been a crucial element in my personal understanding of how I am to behave in this world, especially when I do require so much help to perform many of the basics. I’ve always felt the need to give more than I receive, even if this is to my detriment.
When my body has had moments of unusual freak out, it’s been easy for me to dismiss as simply a passing moment that I could live through without repercussions. Yet, I’m starting to finally realize that this perspective is an unrealistic ideal that leads to putting me in a position where I’m unable to help anyone. The perspective that I had been living with is based on the assumption that I don’t need anything for myself and that anything I do need, will automatically appear through my willingness to serve others.
I’m realizing that in order to do what I want for the benefit of others, I need to be able to take care of myself. This means addressing my own needs rather than ignoring them. This is a very difficult lesson for me, and as I have started exploring it over the past couple weeks, I find myself stumbling at every turn. Taking care of myself, as I’m discovering, is extremely complex and I have a feeling it will be a long process before I learn to do it well. At the same time, I finally recognize it as a valuable lesson and one that I need to learn, both for my own benefit as well as others.
Tags: daily living, disability, disability and love, disability and marriage, disability and relationships, interability marriage, Megan Cutter, self care
This week was pretty tough, but full of lessons for both Barton and I. Last week, Barton got sick (guy stuff) and it took several days before we found out what was really going on. While it could have been prevented, Barton has a tough time putting his needs first as he has learned survival mode & doesn’t want to be in the way nor does he want to ask for help- a level of stubborn independence we both share. Instead, toughing it out. But sometimes toughing it out isn’t what’s needed.
At the same time, it was the 9th anniversary of my mom’s death, and even though time has passed & I have come to terms with her death, I still miss her. I saw her push the limitations of her body beyond what they were capable of, and throughout my life, creativity brought expression to pushing those boundaries, through her vision, through her art, through our relationship of a mother and a daughter and the art we created together. I have so much admiration for that ability to push through, no matter what the circumstances. Yet, at other times we are called to be vigilant and gentler with our physical bodies.
In truth, how many of us put everyone else first until we become run down, exhausted, sick- unable to be present where we are or take care of what we need to do. I admit, I am guilty of this. I used to think I could do everything & there was a time where I was only sleeping 2-3 hours a night. How long could I sleep two hours a night and be effective the rest of the day? In truth, not long.
Creating boundaries has been a difficult lesson for both Barton & I, yet essential to keep our lives in balance. We’ve learned there are weekends we need to crash with a movie weekend, we need date nights out, we need to let the long list of things to get done drift out in the wind. When we come back to the work that needs to be done, we are better focused, motivated, and ready to roll.
After getting all over Barton about taking care of himself, I had to take a look in the mirror. The same day Barton finally called his doctor, I set up an appointment with my dermatologist who I haven’t seen in two years. I also renewed my membership at the pool, and swimming laps at 7am never felt so good.
It’s so hard to realize that we are precious- precious in the eyes. Whether it’s our child, partner/spouse, family member, friend, God/or whatever your spiritual definition is, you are precious in their eyes. They need you, they need you to be there. Each one of us has a purpose, a mission we are given to carry out, and if we can’t take care of ourselves, we can’t be there to carry out that purpose.
A challenge for the week- take one step everyday to nourish your body.
Tags: disability and humor, disability and love, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter, wheelchairs
Yesterday I came home and it was clear that the room had been rearranged. The rug had been moved, not just a couple of inches, but clear across the room. The table with files on top had been moved vertically with several piles of movies on top. Our two dogs and new puppy lie on the sofa, all in a row, exhausted, with guilty looks on their faces. And Barton was tipped back in his wheelchair just cattycorner- the doggie gate strewn across the kitchen floor.
Okay- and what happened here? And Barton smiles. The wheelchair repairman had been here, and like a comedy of errors, the dogs had started barking as he went to the front door to ring the doorbell. Barton’s wheels got stuck on the rug, hence dragging it clear across the room. Once Barton got his chair unstuck, the repairman had come to the backdoor, and Barton knocked the doggie gate off in the kitchen. I wonder what the wheelchair repairman must of thought- he knows our crazy antics pretty well, so it would be nothing new.
It was like the time where I came home from an overnight out-of-town trip and Barton was “supposed” to be watching the dogs. When I walked up the ramp, I knew disaster had struck as Bear and Basho had ripped apart a bed comforter and had strewn stuffing all over the porch and living room. Thinking that something tragic had happened, I ran to the office, where Barton was working on his computer, completely oblivious to the disaster that lay just outside.
Or when I came from to find the office doorframe literally sideways. Hmm. We’ve banged ripped nails back into the wall, pulled splinters of wood off, and finally Barton just ripped one side clear off.
As Barton told me the comedic story, I picked up the remaining pieces, moved the rug and furniture back to their original places, and spent a good fifteen minutes pondering how to put the doggie gate back together. Later, I would find a piece of wood, in the kitchen, ripped from the door frame.
I’ve gotten used to coming home to find pieces of wood dislodged from their original place. It is the consequence of having a home too small for a motorized wheelchair. We still haven’t repaired the dents in the hallway. But, it is a home well lived and well loved.
Tags: disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, interability marriage, Megan Cutter, personal care assistants
This week I had a conversation with a friend, but I was struck by misconceptions that hit to the core. As both Barton & I are in the midst of job transitions, this summer we are cutting back, everything that we can. At the moment we cut out morning help, something that we don’t normally like doing because it shifts our roles. But because of how expensive it is, we had to cut back. My friend responded by talking about how she understood, she took care of her family, and it’s like taking care of a baby, but a big baby. What? Are you serious? Really?
This comment floored me- absolutely floored me. Now my response was quite defensive, and if I had been paying attention I would have pointed out how sad it was that she was not able to see beyond the actual issue. Of course, instead I went on to defending my husband.
Yes, as we grow older, we lose our memories, our capacity to take care of ourselves, to be independent. Many of us take care of parents and grandparents as they grow older or transition into a state that is more child like. But this misconception hit to the core that Barton was a big baby because he had a disability and needed additional help.
Barton is an independent man, husband, coach, teacher, poet. His heart and service is invaluable and he has worked his butt off to get where he is. He doesn’t like relying on others, not even me, and works hard to be as independent as possible. He provides an example for others to open the space for them to see that they too can live fulfilling, independent lives.
Looking at those with disabilities as being babies is dehumanizing, demoralizing and strips them of any value or worth. It’s easier to think those with disabilities have no value in the community whatsoever where we could put someone in an institution or dismiss them altogether.
Often people tell me that I am so good to have married Barton, as if Barton had no say. Do they not know that he was the one to asked me to marry him? I am so privileged that he chose me, especially since it’s common that women swoon over his bright blue eyes and smile.
Would she have believed me if I had talked about how much Barton does to take care of me? I doubt it. Many people don’t see the ways in which Barton takes care of his family, work, service. They only see what they want to see, and often times, miss the heart that is right in front of them.
Later when I talked about adoption & fundraising we were doing for accessible equipment, she quickly assumed we would be adopting a special needs child because I was talking about accessible equipment. Her shock that Barton could take care of a child was clear. Again, the misconception that Barton could never be a father or take care of a child even though he’s in a wheelchair or has a developmental disability.
So much work is being done to negate these misconceptions, and just in the time Barton and I have been together, we constantly push beyond the barrier that people place around him, around us together as a married couple.
Yes, right now it is tough- it is tough for everyone hit by the economic turbulence. And we aren’t immune to that. But it does not mean that we can dismiss those with disabilities or devalue their contribution to our community.
Tags: Barton Cutter, daily living, disability, disability and humor, disability and love, disability and marriage, disability and relationships, disability and sex, wheelchairs
This morning, I got Barton up extra early (4:30am) as he has an interview in Greensboro (keeping my fingers crossed). As Barton did his early morning standing and walking across the living room floor, he asked me to tighten the screws on his foot petals. Why? We know all too well how Barton can come home with big clunks of metal in his briefcase. At least he has found someone to pick up the foot petal or whatever has fallen off when he’s out and about.
When Barton got his stander/walker just after we were married- it came in a huge box with many pieces of metal, screws, plastic covers, and a book of instructions. We spread the pieces all over the floor, and not being engineering inclined, I poured over the instructions. How was it that Barton told me to throw out the instruction manual and include a piece here, don’t use this piece here. I was in tatters trying to follow his logic, but it was exactly what he wanted.
Since that time, I have learned the ins and outs of wheelchair repair and the challenges of wheelchairs on the road. Barton is definitely a road warrior. He’ll come home with stories of his bus catching on fire, getting lost trying to take a shortcut, walking in a thunderstorm in the winter, buses not working. Running out of battery when he was taking me out on a date night. And the infamous times when we broke Barton’s wheelchair, you know, the old fashioned way.
You name it- he has been through it. What would we do without duct or electrical tape? We would truly be lost.
I used to fret and worry when Barton’s out on the road- okay- I still do, but as long as he comes home in one pieces (or carrying all the pieces), I’m happy.