Coming Home
December 22, 2009 at 4:45 pm | In Ramblings | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, gratitude, Megan Cutter
This weekend, Barton and I drove to Tuscaloosa, Alabama for my grandmother’s memorial service. While we were caught in the snow and ice in Charlotte, we did finally make it. I read the piece below at the service on Sunday. When Barton and I would visit my grandmother, we would have the most incredible exchanges, most of them without any words.
There’s almost more that I don’t know about my grandmother than what I do. I don’t know what it was like for her growing up, being a minister’s wife, or raising three children in times of uncertainty and change. I didn’t know her in her younger years, a Southern Woman, wearing magnificent dresses and style of the time. I didn’t see her when she taught classes to children or Body Recall to seniors.
But what I do know are precious moments in time, and so today I will link some of those memories together, little jewels like pearls on a necklace.
I remember my grandmother reading to me as a child, and when I would visit Tuscaloosa, we would sit in the living room upstairs reading or talking. She would make frocks for me to wear, but I was much more interested in wearing overalls. I would know my grandmother by her conversations with my mother in the kitchen making dinner or the lunches after church when granddad would retire downstairs.
If we went out, we would go to 5th Street Diner, or if it was a special occasion, Cypress Inn. It would always take us some time to determine the best place for us to sit, usually by the glass windows overlooking the water.
As time progressed, there were memories of uncertainty, concern and anguish over her fading memory. There were also moments of humor and laughter, like the time when granddad came home to a house full of Beannie Babies, little stuffed animals. Now I can tell you that my mother was as much of an instigator as grandmom in this adventure. The downstairs Christmas tree that was filled with Beanie Babies was a symbol of their spirit, laughter and life.
When granddad had surgery, grandmom’s fire and spunk was made known to us all. But when we took her to granddad’s room in recovery, they sat next to each other in silence. While we left to give them some privacy, for just a moment, a milla-second really, I noticed granddad pat her on the knee and on the face. I learned more about endearing love in this moment than nearly at any other time in my life.
Grandmom knew my husband Barton not by his name, but by his face. We would walk into her room, and she would pat Barton’s goatee and laugh. Every visit would begin in this way. We were there with her, wherever she was in that moment. The past didn’t matter, the future did’t matter, only that present moment.
Once, she advised me that when I got married, not to pay any attention to what my husband thought or said, just to do what I wanted to do anyway. She told me that while granddad was downstairs or away at church, she would dance. Now while I haven’t completely taken her advice, what I believe she meant was not to worry about what other people thought or said. She blazed her own path, and whether it was known or hidden, she lived an independent life.
Everyone here may have different memories, that of a mother, a grandmother, a church member, a teacher, a friend. Today we honor and celebrate these memories so that we may live our lives fully, in the present moment, as she did.
My mother wrote to me one time saying, “Your path isn’t easy, it is made of jewels milked with stones that make you strong and able.” This is how I remember both my grandmother and my grandfather.
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Walking Through the Storm
December 16, 2009 at 7:25 am | In Our Love Story, Ramblings, The Nitty-Gritty, Wild Stories You Just Wouldn't Believe | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, gratitude, Megan Cutter, vision
Waves on Hatteras Island.
Recently, we were talking about celebrating our fifth year anniversary with the adventures in Hatteras Island with the storms of Ida and the Nor’eastern. We had taken the accessible van we had rented a few miles north, supposedly to higher ground. When we realized we would be evacuating by ferry, we knew we would have to retrieve the van. I called the Island Taxi, who called just less than a mile from our van saying the flooding was too bad. She turned around and headed back.
We knew we needed to get the van so we could get on the next ferry evacuating off of the island, so immediately, I changed clothes and dug out Barton’s water shoes- thank God we brought them! Barton made me take my cell phone and watched me from the balcony as I began the hike through the water-covered streets to pick up the van.
Overwash on the roads.
At that moment, the rain had stopped, but the wind was still pretty fierce. Several times I stopped, thinking there were sirens going off, but then realized it was only the wind. I climbed the washed banks of the dunes, navigating a path along the side of the road.
Every so often Barton would call me on the cell- how are you doing? He would tell me about cars or obstacles I needed to navigate through. I got focused very quickly- the faster I walked, the sooner I would get there.
Several days before, we walked the same path, and I would calculate how much further I had to go by landmarks we had passed the previous day. We had also picked out small little round briers from Bear’s feet. Twice I walked through these patches, and picked the briers off of the water shoes and my ankles.
Man O'War littered the beach after the storm.
Also, jellyfish were blown in onto the beach from the storms. Not realizing why my ankle was stinging, I later found I had been stung by a Man O’War, nasty little buggers.
As I got closer to our van, I get somewhat concerned because I was walking what I was going to be driving back through. On the other side of the street, a wooden cross bridge was not floating in the road. Yet, I knew I couldn’t stop.
Why am I including this fun little escapade in our blog? There were so many lessons we took from this. We knew what we needed to do and wasted no time getting ready and were focused on doing what needed to be done. We didn’t pay attention to what other people said or thought, we just got on the path and did what we needed to do. We are both still learning how to apply this lesson in other areas of our lives. Barton had my back- he watched me the entire way and called to check in and to give a head’s up on what I needed to watch out for.
Crashing Waves in the Wind
Was my life in eminent danger? Maybe not. But who knows what was around the corner. The metaphor of the storm is one we are still processing. We were full of awe at the power of nature, every time a wave would crash, we couldn’t help but just feel so humbled.
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When is it Time to Ask for Backup
December 7, 2009 at 3:24 am | In Adoption, Barton's Blogs, Megan's Blogs, Our Love Story | Leave a CommentTags: Adoption, Barton Cutter, daily living, disability, disability and love, disability and marriage, disability and relationships, disability self advocacy, Megan Cutter, vision
Barton and Megan on their 2nd Anniversary.
I don’t know about you, but as small business owners, we are both determined, adventurous and persistent. We tend to take it all on, and do it ourselves. But at what point does doing it ourselves limit us from reaching our goals? It’s taken us a while, and we’re still learning how to ask for help.
It’s no secret that we want to have a child, and in order to provide the best care that we can, we will need some additional support. It took time for us to process and decide which avenues we should pursue in having a child. In addition, we wanted to make sure that as an inter-ability couple, we would have the tools necessary for us to be able to raise a child to the best of our ability. We spent almost a year trying to figure out how to find the support in a way that reflected both of our values.
We thought about taking all of it on ourselves, but realized this would not give us results. When a few fundraising opportunities didn’t work out, we started to look at our values, and how we could best include them in meeting our goals. Community is the focus of our vision. It is very important to us to support our community, and more than once we have needed our neighbors’help.
The type of resources we are raising funds for include an accessible vehicle, additional assistance for both Megan and Barton, assistive technology devices for Barton such as a baby carrier that attaches to a wheelchair.
It’s really important for us to provide an exchange, so over the next year, we’ll be doing a couple of community fundraisers. The first one is for the holidays. We are selling Christmas cards (Megan’s photography and Barton’s haiku) and selling key lime pies (for the Triangle Area). Check out how you can become involved at http://cuttersword.com/holiday-cards-and-more.html.
Check back for more community events throughout the year!
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A Heart Full of Gratitude
November 30, 2009 at 2:32 am | In Megan's Blogs, Ramblings | Leave a Comment
Reflecting on the blessings in life.
This Thanksgiving, Barton and I spent the day with my family in Atlanta. After having such an eventful week in Hatteras, I was terribly behind in work, yet I knew it was important to be with family, so with house in near tatters and the computer practically still attached, we drove on treacherous roads, past ten accidents on 85 (no, never a dull moment). We had a great day of feasting with family, and it was my cousin’s 21st birthday!
I have not always been so joyous about the holidays. After my mother passed away, I spent several years trying to avoid and escape the holiday season at home. Yet as the year has passed on, I have realized how important those connections with family are.
This year, it’s been such a joy to get to know our neighbors and those in our community around us. One day this fall I borrowed a neighbor’s van to pick up some bookshelves our mentor from our writing group was selling. While moving bookshelves out, we had a chance to chat about family and work, and it was great to get to know them better. Dropping my neighbor’s van off, I helped her move the heavy seats back in, something she had put off since it was a two-person job.
I am reminded about how important those community relationships are when I recently had to leave to teach an evening writing workshop and Barton had walked home in a cold downpour. Barton walked to a neighbor’s house, who helped him dry off.
Yesterday, I found out my grandmother passed away. On one hand, I am not sad because she had suffered from Alzheimer’s for many years. On the other, she was my last grandparent to pass away, and I am saddened by a generation now gone by. When Barton moved to Alabama, my grandmother patted Barton’s beard and smiled, and even the last time I saw her, our eyes connected.
This holiday season, I am thankful for all of the blessings in our lives, our family, our neighbors, our community, and I look forward to the adventures to come.
//
Vacation Evacuation
November 22, 2009 at 9:02 pm | In Megan's Blogs, Our Love Story, Wild Stories You Just Wouldn't Believe | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, love, love story, Megan Cutter
So we were supposed to go on vacation for our 5th year anniversary to relax, and it had been our only vacation for the year. We did relax, in fact, we had an incredible week, but we also had a bit of adventure getting home.
Why Did We Stay?
Tuesday, we realized that the storm was headed toward the Outerbanks, and there was a possibility of flooding. We decided to stay for several reasons. While we were right on the sound and beach, we were in a secure house, and the main living area was on the fourth floor. We had groceries, everything we needed to ride out a storm. And we knew if we went home, we would just be sucked back into that long list of things to do that would intrude on this time together that we really needed.
Bracing for the Storm
Stormy seas
In preparation for the storm, we made sure we had all the food & water we needed. We drove the van a couple of miles up in case of flooding where we were. In the next several days, we experienced little road over wash, rain and wind. The wind was like nothing we had ever heard of, and the waves crashed between 6-12 feet. At one point, we were sitting inside and looked out the window to see an orange beach chair tip over and slide across the balcony to wedge itself under the ledge. And I admit, I did quite freaked out when the mirrored clock on the wall shook as did the rest of the house against the force of the wind.
Vacation Evacuation
Saturday, we received a call from the house rental company- an evacuation ferry was leaving in an hour to go to Occacroke. An hour, but there was no way. We didn’t even have the van- I didn’t even know if I could get the van. We weren’t getting off by road as the roads by Rodanthe were completely washed out, and there was no way to know when they would open up the roads. She did tell me the numbers to the ferry so we could find out when the next one would be leaving. Right away we called to book a ferry on the mainland from Occacroke to Swan Quarter, with hopes that we could get to Occacroke in time. We called the island taxi service, however she called about a mile from where we had parked the van with news that she had to turn around. I knew that we needed the van and walked two miles in the wind and rain to pick it up, several times having to climb the dunes to avoid the flooding in the roads. I was a little concerned, after all, I was going to have to drive back.
Flooding in Hatteras.
That night, I could hardly sleep. Waking up at two in the morning, I began packing and loading the van. At four am, I could see the travel on the roads pick up, cars headed into Hatteras village. I woke Barton up with a start and began rushing to pack the van. While I didn’t know exactly what was going on, I knew we needed to be there. At five thirty, I called the ferry. Ferries were going out, on an evacuation basis. We rushed to get everything packed, and headed through the flooded streets. Driving through Hatteras Village, the water got higher and higher around the accessible van we had rented (which was heavy and only 2″ off of the ground). Just the day before, we had ventured out, but turned around due to the road over wash. Several times, the battery light came on- we were getting wet. Yet, we knew we had to forge ahead.
In the ferry lane, we discussed what to do. Should we try to wait it out a few more days? Should we see what Occacroke would be like? What if the battery died? What then? Finally, I noticed a couple of other cars, which were also low to the ground. I asked them about the roads, and we struck up a cool conversation since one of their cars was also accessible. We chatted about accessible vehicles, adoption among other things. It was a great connection and camaraderie!
Occacroke Island.
The men and women loading the boats were absolutely incredible. What a job they had getting every car they could off the island. In Occacroke, the roads weren’t as bad as we thought- with flooding in localized places. However, the restaurant that we had eaten at earlier in the week was completely flooded with water. Because we had made a reservation, we were able to secure the ferry to Swan Quarter. We stopped at the local store, picked up lunch and ate in the car. We waited another several hours to board the ferry that would finally take us home. The dogs began barking and whining on the ferry from Occacroke to Swan Quarter. I didn’t blame them- they had been in their kennel for over seven hours at that point.
Finally, on dry land, or so we thought, we touched down in Swan Quarter. We got a little turned around as we headed home. Now safely at home, we have tales to tell from the sea.
An Unusual Detour.
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Not Exactly the Way Pictured it… Yet Perfect
November 18, 2009 at 1:21 am | In Megan's Blogs, Our Love Story, Wild Stories You Just Wouldn't Believe | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, gratitude, love, love story, Megan Cutter
Last week, as we were preparing for our fifth year anniversary vacation to Hatteras Island, the weather was sunny everyday. Well, we’ve had some adventures this week! We got here to the Island, and spent two days sitting on the porch relaxing (backporch, the silence of the sound, front porch, the gentle waves).
Our first little adventure was when Basho broke free from his collar on the dog’s trip out to go potty. Basho is still a puppy at just a year old, and we should have named him Tigger from the way he bounds everywhere. So he was bounding around running from me as I chased after him. We make a game, and I try to get him to chase me into the house. Finally he took a break to go potty, where I was able to wrangle him back in.
Before the digs out of the sand.
The next day, we took them on bit of a walk, and on the way back, Barton pulls off the road to let an ambulance pass by. Into the sand, of course. I attach the dogs to a sign post, remove all the bags from his wheelchair. At just that moment, Barton sees a couple riding bikes and flags them down. With the three of us, we managed to push his wheelchair back up onto the road.
But, as we turned into the house, Barton took a different way in, back into the sand of course. This time, we were on our own. He had me get two pieces of firewood to wedge under the wheels, and with a bit of pushing and rocking, I pushed his wheelchair out.
We were unaware of the two fronts, remnants from Ira and the Northeasterly wind front that were about to make a huge splash across the Island very quickly. The power went out the first night of the storm, and as I looked down the street, realized it wasn’t just our house, the entire Hatteras Village had lost power. Finally, power came back on after many fits and starts.
Crashing Waves after the storm.
The rest of the week, we watched 6-12 foot waves and the water pool on the streets both from the ocean and the sound. I had taken our car to higher ground, but found we were in one of the best places on the Island with minimum flooding. However, to retrieve our car, I had to walk two miles in the wind, fog and pools of water covering the street. For several nights, the house rocked to the force of the wind.
We ventured out to Hatteras Village and realized how lucky we were. Water covered nearly all of the streets. We stopped at the only restaurant that was open and hadn’t been flooded and listened to talk about the storm. Outside, the locals walked or rode their bikes down the flooded streets in galoshes and water bibs.
To get off of the island, we must take the ferries as the road north of us has been washed out, and so we must wait to see if and when they will run. (No, our adventure isn’t over yet)!
Rainbow Over the Sound.
Yet, we had the best week together. On our anniversary, we drank champagne with strawberries, read poetry, danced to music. We sat on the porch and just relaxed into the silence of the sound and then witnessed the power of the ocean’s waves and listened to the constant wind across the ocean. We watched dolphins surf and flip through the incredible crashing waves. We watched the stars dance across the night and a rainbow across the sound between storms. We cuddled up together when we lost power. We wrote and read to each other on the swing overlooking the beach and ocean.
We couldn’t have had a better week.
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Happy 5th Anniversary (from Barton)
November 18, 2009 at 1:19 am | In Barton's Blogs, Our Love Story | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, gratitude, love, love story, Megan Cutter
Out of the back of the ferry, I watch a pair of sea hawks gliding on the airstream of the boat. Above them, the first blue sky in five days. While I did not expect to have such an eventful week, filled with howling winds and a battery of rain causing the Hatteras Dunes, I could think of no better way to spend a week of celebration with the woman I love.
I suppose that after five years as a couple, I should expect nothing less than the unexpected, which makes for a wonderfully rich and diverse life. I came to this vacation with great anticipation of spending the week writing, both on our manuscript and for this blog, creating some fun videos and finding some ways to get my coaching practice off the ground. And of course, all of this would be done on a gorgeous porch overlooking the ocean waves or on the sound depending on what we fancied at that particular moment.
Silence of the Sound
At the beginning of the week, we were perfectly on course to see this through as the first day we were there, we spent the entire day relaxing watching the sound mirror an infinitely blue sky. We also had the much-needed opportunity to allow every spec of tension to be washed away by the sound of the surf.
After three days of relaxing and exploring the neighboring island of Occacroke, the remnants of Ida rolled in. Then the fun began. We both agreed that, despite the warnings, it was worth staying put, even amidst pouring rain and gusting winds.
In between the periods of rain, I couldn’t help but to step out onto the porch and revel at the sight of the enormous waves. In preparation, we scurried to the grocery store and got all the nessacery provisions for the rest of the week which included ample chocolate and beverage. Since the house we were in was situated on the northern tip of Hatteras where there is little more land than 200 feet between sea and sound, Megan found higher ground for our rental van in hopes of keeping it from being washed away. Alas, by Thursday morning a break in the dunes to the north of us was causing flooding to the “safer” area where we left the vehicle. At the same time, the local taxi had stopped running, causing Megan to trek out on foot to save the van. Thursday evening, the clouds broke briefly and we were able to enjoy the setting sun cast amazing tones on the nearby clouds.
By Saturday, the day we were originally supposed to leave, I was beginning to feel a bit of cabin fever and since the area near the house looked relatively clear, we decided to venture out for lunch. About a quarter mile up the road, we found ourselves treading through a river six inches deep covering the width of the road. Having perused our options (those limited few that were open and dry) we turned our sea-fairing van around and headed for a hole-in-the-wall on the edge of Hatteras Village, before the worst of the flooding.
Flooding in Hatteras
Perhaps, however, the greatest adventure started this morning as we packed the van at 5 AM to catch the ferry alongside other evacuees. Yet again we found ourselves wading through flooding roads with six or more inches of water but this time the already low riding van was weighed down by brimming luggage and two dogs in addition to my wheelchair. As we found our way through the deepest waters, we noticed the electricity dim in the van as the battery light went on and a faint waft of smoke rose from the hood. Thankfully, however, we made it to the ferry with only a minor panic. Once in line to board, Megan asked some people from an adjacent car what to if our car died. To our amazement the couple that we spoke with are adopting a boy with CP and are exploring the possibilities of moving to Raleigh. After a great conversation, we all boarded safely and are on our way home. What a great anniversary!
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Happy Anniversary! (from Megan)
November 18, 2009 at 1:16 am | In Megan's Blogs, Our Love Story | Leave a CommentTags: disability, disability and love, disability and marriage, disability and relationships, love, love story, Megan Cutter
This week, we traveled to Hatteras Island to celebrate our fifth year anniversary and had a true adventure of sun, storm, and wind! Our lives together have been an adventure, and it’s been amazing to think about how far we’ve come in only five years.
We’ve had our share of celebrations and challenges over the years including moving to North Carolina, buying a house, starting our own writing business, Barton’s surgery, challenges of growing our family, and speaking at conferences and events. I am so blessed to be with someone who truly lives life with a smile and an open heart.
I admit, I grew up with a more cautious outlook on life. As a very young child, I would look to what my mother or my father thought of what I was doing, remnants of challenges with their divorce. I would look to the approval of those in authority and held back.
Thinker on the Balcony
Coming out of those old thought patterns, I am blessed to see how open Barton is, with all life experiences.
As an inter-ability couple, we’ve had many challenges along the way from people who thought we shouldn’t be married in the first place to a continual break down of stereotypes where a family member has a disability. But with laughter and a bit of perseverance, we have walked through many of those challenges.
We’ve also had many joys, from celebrating with Chinese eating on the floor of our first house to reading and speaking at many different conferences and events, we are always a part of something new and exciting. I am always amazed at the different projects we have worked on over the years.
A toast to the years to come and to the adventures ahead!
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A Whirlwind of Words
October 28, 2009 at 3:39 pm | In Megan's Blogs, Our Love Story, Poetry, Speaking Engagements, Work | 1 CommentTags: Barton Cutter, disability, disability and love, disability and marriage, disability and relationships, love story, Megan Cutter, Poetry, Speaking Engagements, Work, writing
This past weekend, Barton and I traveled to Atlanta, GA where I spoke at the Annual Writing and Wellness Connections Conference. I was excited to be with other writers who practiced and facilitated writing specifically for health, healing and wellness. We enjoyed a night out with family and drove back early Sunday morning just in time to help set-up for the Annual North Raleigh Author Showcase, where we facilitated the Open Mic section of the event.
We are lucky to be in an area where there are so many writing networks and events, supporting the literary community and finding an opportunity to give other writers a voice. There’s not a week that goes by where we aren’t reading at an open mic, facilitating a workshop, working on a story or attending writer’s meeting.
Barton has dipped back into writing poetry, while I enjoy writing poetry and longer non-fiction pieces as well. When we first met, Barton and I would email poetry and short stories back and forth as a part of our courting. Because of the time difference between Alabama and Arizona, I would receive e-mail with a poem in the morning and in the evening. Little did I know that Barton would spend an hour or more writing each email because he uses a head pointer, technology assistive device, to type.
Barton and Megan at The Globe Theatre.
Last year, we traveled to London and Scotland to attend a family wedding, Barton and I attended A MidSummer Night’s Dream at The Globe Theatre. We were right up against the stage, groundlings, and it was so incredible to see the best actors and actresses in theatre, with natural lighting, drawing the audience in. We could have reached out & touched them!
The day before, we just had a few hours to ourselves, and we literally raced up cobble streets to get to The British Library to see the original works of some of the greatest literary writers in Europe including Shakespeare’s first manuscripts, pages from Leonardo Divinci’s Notebooks, letters from Jane Austin, drawings from Galileo and Isaac Newton, Captain Cook’s Diary, the Guttenberg Bible, Dante’s Divine Comedy- the list went on and on. From Barton’s view, he was able to see printed text and designs not only from above, but from the side view, inside the pages, as well. There was no one else that could have shared the delight and joy of looking at these delicate treasures.
While we still write poems for each other, we find we are now united in bringing a voice and opportunities for others to express themselves, to tell their own stories. This November, we’ll be completing Ink In the Wheels: Stories to Make Love Roll, to be published in 2010, and we are excited to be telling our story, inspiring others to live and love.
//
When the support isn’t supportive
October 14, 2009 at 8:27 pm | In Barton's Blogs, The Nitty-Gritty | Leave a CommentTags: Barton Cutter, daily living, disability, personal assistants, personal care assistants
Yesterday, as Megan said in her post, we had to let go of my morning help. While on one hand this was extremely difficult for me as we had been without help in the mornings for over a year, it became apparent that there was a clear disconnection between my needs and her understanding of this situation.
As a person with a disability, I have a strong conviction that I was put here in this form to help teach. Moreover in situations where I require the support of others, I expect that at a very fundamental level that they will enhance, in one way or another, the relationship or task at hand. Much of what I attempt to do, in every interaction, is to provide an example of inspiration despite any physical limitations. In my own experience, this comes from a strong determination to do what I believe to be right in any given circumstance. Often this involves great patience, deep faith, and the ability to act on the need of others at that time. Most of the time I have found that people respond favorably with a willingness to learn and grow from our encounter. Yet in this particular situation this was not the case.
While I do rely on the support of others to perform certain physical functions, this in no way lessens who I am as a human being or as a man. So what happened when someone who is supposed to support me does not view me as a whole and capable human being? I understand that because of her training as a nurse she had a very clear understanding of what was required to get the job done. However, as often happens in nursing homes or other atmospheres where human dignity is compromised, there was, from our perspective, a resistance to acknowledging that I was capable of asking for what I needed in the way that was most appropriate to my situation.
I found that in this situation I gained a unique perspective on what happens to people living in nursing homes and institutions who lose their passion for life. I found that after several times of asking for things in the way I needed them done I soon quit asking as I realized that my attempts were nothing more than wasted breath. This lack of respect began to impact the way I viewed my decision making ability. At the same time she continually placed Megan in the position of sole decision maker which over time began to erode the balance in our relationship.
While both Megan and I had attempted to address the situation with her, both as a couple and individually, our attempts did not prove helpful in changing the circumstances. As you might guess, the emerging patterns and behavior that I noticed in myself as well as in my relationship to my family were in drastic opposition to the way I choose to live my life.
It was for this reason and this reason alone that Megan and I chose to let her go. Interestingly in the past 36 hours or so, Megan and I have felt more aligned than we have in months and it has felt incredible.
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