Who’s Out There?

 I started this blog a year after my devastating accident at the urging of a friend. I began it with the purpose of sharing my thoughts and daily journey with others who either face or are wondering about how I’m doing on my Road to Recovery. Writing is therapeutic for me as well. I have been astounded by the number of people from literally across the world who have read the blog and taken a peek into our world. I say our because spinal cord injuries impact the lives of family and also close friends. They are the ones who step in to help when I cannot step. They help for the many crucial work-arounds as I call the methods to help with functions from my T-6 injury point on down that no longer operate.

Maybe you, like me, also wonder, “Who’s out there?” Well, there have been readers from all the continents except Antartica! There have been readers from 45 different countries. Those are humbling statistics. One thing that my husband and I had looked forward to in our retirement, that has been severely curtailed, was travel, especially international travel. How amazing it would be to visit each of the countries where others have read my blog. You’ve looked into my world; I’d love to visit your world.

Photo by Jimmy Chan on Pexels.com

Photo by Jimmy Chan on Pexels.com

Recently, there have been a great many view from Hong Kong. My husband and I thoroughly enjoyed a visit to Hong Kong less than ten years ago. I am intrigued by the person or people who have been reading at this time. If you have questions, want to ‘talk’ in more depth, have specific questions about other work-arounds, or need information, please contact me. If you submit a comment, I can keep it private. No one else needs to see it. I will certainly respond, again privately.

As I said many times, I have been given grace through this accident and experience. It is NOT easy; nothing about it is easy. But, I’ve been helped and supported. I’d like to help and support others.

I’ve been blessed through this experience. Watch for your blessings. Shalom, Collene

Check out “Of Interest” Page —^ (above)

Morgan Inspiration Island, San Antonio, TX

Acknowledging Loss

About a year ago, at the 2-year mark, I decided it was time to share some of the God-moments from the time of the accident and weeks surrounding it. After months of procrastinating, I realized I wasn’t yet ready. I will follow through, recognizing the importance of documenting those surprising moments for our children and grandchildren, but they’re still apparently too raw.

At the time of my accident, one of our sons gave me a blank, lined-paged, hard-covered, black book simply labeled “Road to Recovery.” It’s an on-going place for thoughts and notes. I realize now that to proceed down that road, it’s time to own up to and name the losses, then move on. What prompted this?

One recent wind-free evening, my husband returned from Mariah after attaching her sails with the help of a friend. “Everything go ok?” was my question after he arrived home and had a few moments to settle in. “The sails are on,” was the expected short answer. I persisted and got, “The headsail went up first – about 20 minutes – and then we worked on the main (sail) the rest of the time. I didn’t have the experienced person who used to help me.” J He had been gone for 2.5+ hours so my antennae went up for inevitable challenges to the intricate process. “Tell me more.” “What more do you want? It’s done.” “I miss being out there and helping. We did it together for decades. I just want to hear all about how it went so I can picture it again.” My thoughts went back to the one and only time I really wept following the accident – for at least 40 minutes. It was the fall after the accident when he went to prep Mariah for winter and, for the first time in 40+ years, I wasn’t there. Anyone who has worked in a boat yard where personal boats are prepped for the winter and again prepped for the summer boating season knows this. It’s a lot of work. There are a lot fewer helpers present out there than there are friends present at the marina to go out for a pleasant sail on a balmy day. Also, there are markedly fewer women than men working on boats in the yard. I had often pointed that out to my husband – wasn’t he the lucky one to have me there each day, each year? I loved being out there, aching muscles, raw hands, ruined fingernails, and all; I loved accomplishing work on Mariah together. There is loss in not only helping work on the boat but even more loss in not being able to enjoy her. The dreams of cruising again on Lake Michigan are lost. The easy day-sails in and out of our Macatawa port are lost. The feel of the boat riding the waves under our feet and the sounds and smells that go with it are lost. This was special time. As one of our sons noted when younger, “boating is family time.”

The most obvious loss is being able to walk, move about, stand, and even sit unsupported. Those go without saying. Other losses are more subtle. I remember dreaming in Mary Free Bed (rehab hospital) that I’d just get up in the morning and go fix …(fill in)… Well, morning came with the realization that getting up to go do anything was lost. I haven’t had that recurring dream since last winter.

I miss:

• Easily flying which means walking on, with my own carry-on luggage, stowing it, and not fearing whether I’ll arrive at the next airport without needing a bathroom.
• The times we expected to have with our children who live too far away to drive.
• Traveling to the exciting and sometimes exotic places – or even a few of the destinations – on our bucket list
• Watching my husband without seeing the stress, loss, angst, and lack of control in his life.
• Walking the beach.
• Walking the pier and sitting down for a bit to watch boats come and go.
• Looking for rare pieces of sea glass.
• Noticing new, unusual, or nearly perfect shells.
• Walking through nature preserves.
• Hiking in the mountains.
• Going anywhere without worrying about finding a handicapped parking spot – with the blue slashed lines designed for vans with ramps or lifts. (NO, they are NOT designed so drivers have extra wide spots where there is no risk of nicked doors.)
  • Going to art shows, parades, reenactments, outdoor concerts, special events, etc. without the fear of rolling for blocks from a parking spot – or worse, returning home out of frustration.
  • Getting from point A to point B without fear of being missed by a driver who isn’t tuned in to looking for 3’ high people crossing a street, going through a parking lot, or using a sidewalk or bike lane.
• Weaving between others at events without worrying that they will back into me landing on my lap or walk in front of me getting their toes crushed under my wheels.
• Freedom to be like other couples who walk around side by side or reach out to hold hands or wrap an arm around their partners’ shoulder or waist.
• Reaching for anything more than 2’ from me or higher than 4’.
• Satisfaction from tweaking / adjusting / fixing minor issues around the condo that should take two hands.
• Biking near our condo with its safe and beautiful nearby destinations.
  • Using our pre-retirement bikes, a noticeable step up from our 1st anniversary bikes, which were well worn but ones we could afford back then. I never knew bike riding could be so easy and enjoyable.
• Easily stepping out onto our deck or out of the condo door.
• Getting down on the floor and reaching under the bed, chair, or sofa to retrieve an item.
• Being able to simply roll over in bed and cuddle up.
• Singing. Oh, I loved to sing. I learned that there are three portions of the breathing system: inhaling and exhaling the lungs (work), diaphragm (below level of injury but thankfully the control area is above injury level so works), and small air pockets in the lower lungs, alveoli in the terminal bronchiole, I believe (don’t work). I still sing but need to take frequent breaths, rejoice that now finally I can hit high C, normally D, and occasionally E. F is definitely out of reach at all times. Half notes and whole notes easily go flat. In retirement, when Board meetings wouldn’t conflict with choir practice, we both looked forward to rejoining a choir. Another loss.
• Driving normally and without even thinking about heavy traffic. You see, I drive but I’m like a 17-year old driver without the years of experience using my hands only. So, from driving comfortably on highways in some of the heaviest truck traffic areas (Harrisburg is central to much of the US population so ideal for distribution centers) and enjoying this quiet time for reflection, I drive only short distances, through familiar routes, and when most drivers are off the streets.
• Shopping and exploring.
• • Many items on the grocery shelves are out of reach.
  • Items I do grab can easily slide off my lap, even if there were room to hold more than an item or two.
  • Although never an avid shopper, some amount of getting out and browsing is important as well as enjoyable.
  • On-line shopping works only to a certain point.
  • Visiting stores that have so many wares that the racks are too close to roll between.
  • Exploring our new retirement areas.
• Going to friends’ homes because of the need to go up steps and other non-ADA features.
• Carefree days since everything below my mid-spine no longer works as intended. I dread the times when even work-around methods fail.
• Simplicity of independence.
• Being pain free.
• Accomplishing recurring tasks like dressing, makeup, dusting, and laundry in a reasonable amount of time. Vacuuming and making the bed from scratch are out of the question.
  • Each task involves work-around maneuvers, task-analysis, doing multiple small steps, and lacks the ability to utilize smooth and efficient arm/hand moves. I need to wrangle my chair to the most effective location through a series of small angled back-and-forth movements. (Think geometry)
  • One arm or elbow must always hold me upright so two-handed tasks need new procedures. That doesn’t even take into account the 15-minute rule for the health-crucial pressure relief
• Cooking without fear of burns from hot items: stove, oven, or cooked food. Microwaves are safer but that reach is problematic.
• Not being able to hold in my stomach. Even weighing just over 100 lbs., I need to carefully select clothes that hide the fact that a lack of stomach muscles leaves nothing to hold abdominal organs in place.
• Being part of normal social activities – the work and the fun.
• And, the list goes on …

Ok, enough! Time to pack up the losses and put them away. Move beyond. Time to stay focused on positive ‘self-talk.’ I DO appreciate seeing, hearing, using my arms, thinking, reasoning, speaking, writing, communicating, elevators, single-floor living spaces, and dear family and friends who have been right there with us. I really am blessed.

Shalom, Collene

Renew

Our niece had a dream to combine her passion for horses with her training as a special education teacher. Her dream came true, and Renew Therapeutic Riding Center now exists thanks to volunteer hours and donations by family, friends, and interested others. Today many students and also adults with cognitive and/ mobility challenges can ride a horse. Imagine living your life looking up at people and now being given the chance to enjoy moving around on a horse, viewing the world from a different vantage point, and looking down on top of others. Check it out. http://www.RENEWtrc.org Christopher Reeves would be proud to see the photo (Renew’s website) of the empty wheelchair. His goal was a world of empty wheelchairs. This poem seems to capture their vision. 

John Anthony Davies:

“I saw a child who could not walk 

sit on a horse and laugh and talk. 
Then ride it through a field of daisies 

but yet could not walk unaided. 
I saw child no legs below 

sit on a horse and make it go. 
Through woods of green 

and places he had never been 
to sit and stare, except from a chair. 
I saw child who could only crawl 

mount a horse and sit up tall. 
Put it through degrees of paces 

and laugh at the wonder in our faces. 
I saw a child born into strife 

pick up and hold the reins of life. 
And that seemed child was heard to say 

thank God for showing me the way.”

 

Blessing abound.

Shalom, Collene

My Personal, Pint-Sized Angel

A much-appreciated feature of our church is the many doors equipped with buttons for handicapped access – well beyond ADA requirements. (Don’t you just love when people do the right thing – not just the legal requirements?) On Sundays, part of the effort to make all feel welcomed is to have leaders in the church stand at the door to greet those coming in. A person typically stands by the access button and pushes it for everyone, offering an open door, but especially before an ‘otherwise abled’ person needs to push it.

A few weeks ago, the welcome person had her 3-year-old granddaughter standing with her. Mimi would remind the munchkin to push the button when helpful. I typically make a point to notice the welcoming person, catch their eye, smile, and thank them so they understand how much appreciated this small gesture is. I noticed the young girl and smiled, thanking her. Now, often when adults see my wheelchair, they quickly look away as if embarrassed, shutting down any need for further communication. This serious, little one looked directly at me after taking a hard look at my wheels. “Why do you do that?” she asked genuinely. I rolled up closer, looked her back directly in the eye, and explained in 3-year-old terms how I had been hit by another car just down the road from church. I went on to tell this attentive youngster that this happened when she was a very little girl. I used to walk just like she does, but now I can’t move below here (gesturing midway between my waist and shoulders.) I lifted my one leg to show that it was useless. She asked a couple more questions, I asked her name, and then we both went back to our own tasks.

After the service, I went to the gathering space where coffee is served. It just happens to be near the area where adults meet their youngsters after their church-school. I was delighted to notice this cute munchkin come back to see me. I gave her a big smile and said, “Hi, Harper! Glad to see you again.” This precious one reached out and gave me an unexpected hug. We chatted a bit about what she had done in church school, and we said good-bye. The following week, Harper came up to me where my husband and I sit – back of church where the cutout pews provide space for wheelchairs. She again gave me a welcomed hug, and we talked briefly about her week. Nearly each week she is at the door with Mimi or comes to find me in the back of church before the service starts. We briefly chat about her week, friends, her day, or how she looks.

During Advent, the children were gathered in front of the sanctuary as usual for the Word for Children. The leader was explaining that they would be lighting the pink candle on the Advent wreath. It stood for joy. Harper spontaneously raised both arms, turned a bit sideways, and struck what looked similar to a ballet pose. This was greeted by an immediate chuckle from the congregation. Harper’s pose underscored the meaning of joy in a much more meaningful way than any words could.

The last two weeks Harper has entered the back doorway that separates the sanctuary from the foyer, spotted me, and literally run to me to give me a big hug. What a wonderful way to begin the service and week for both Harper and myself. It didn’t take long for me to realize that Harper is my pint-sized angel. Her greetings are truly a gift of God.

Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. (Hebrew 13:2, NIV)

Watch for your little angels. Shalom, Collene

A Story of Grace

I was asked to speak at our FL church for a stewardship moment. It is at the very beginning of the service immediately after the announcements. If it doesn’t come up, it was Nov. 27 ~ click the “watch” button.

http://www.moorings-presby.org/archive-services.html#

For a second time, my testimonial was called “A Story of Grace” by others. It is.

We all receive blessing. Shalom, Collene

Tears

Here we were on this lovely cruise. We were well fed, well taken care of, in an accessible room, relaxed, sunning, entertained, reading, … But, yet, as I read my book, I was tearing up for the second day. The book was historic fiction set near the end of the Civil War and slavery, written from the viewpoint of the slaves. I have read plenty of books about slavery, slave trade, Nazi suppression of Jews, Dutch suffering when caught for hiding the Jews, Japanese Internment camps, Native American suffering based on the US government’s broken promises and white western expansion, … lots of books about some of the worst examples of humanity. Why were the tears continuing to stream down my cheeks while reading this book, I wondered?

The slaves in this book kept supporting each other with promises from God. Promises like “his eye is on the sparrow” sustained those who were suffering. They had faith that, in the end, God would provide Glory. Eventually it dawned on me. Now that I am living in a wheelchair, I feel imprisoned in a body that no longer works. I have a small sense of what it must have felt like for slaves. In a way, I was like them with no way out of my paralysis, here through no personal choice, benefiting from the love of family who also had no ability to change my situation, … I thought I had always felt empathy for others. What I felt in the past wasn’t as real as it was now to feel the pain of others in similar groups.

Maybe the worst hurt came when I realized that a then-Presidential candidate was mocking others with handicaps like me. Not only did he think it was funny and ok to mock us (or anyone), but he did it while trying to impress and earn the support from voters who also thought it was ok. And, it wasn’t only those of us with handicaps but other groups were purposely targeted and disenfranchised.

Another realization was “in my face.” There was not one excursion off the ship in any of the six countries included on the ship itinerary that was wheelchair accessible. I was told by ship staff that one particular city we visited, of over a million people, did not have one bus in the city that was accessible. How challenging it must be for those with handicaps in such countries. It made me grateful for the many people before me who fought long and hard for the Americans with Disabilities Act (ADA) and Housing and Urban Development’s (HUD) Fair Housing Act (FHA). I also wondered what America some people wanted us to go back to when America was greater than it is now. Prior to ADA or prior to more fair civil rights?

I am reminded of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” I pray for America, Americans, and our leaders. Jesus ate with Samaritans and tax collectors. Our command is to love others as ourselves. Isn’t that how we work to help His will be done on earth as it is in Heaven?

Give thanks for your many blessings.

Shalom, Collene

Joy Through the Eyes of a Child: Who Just Happens to Have a Mobility Disability

 

Recently my husband and I were privileged to attend Stroll n’ Roll, a fundraiser and fun activity for Spina Bifida. Stroll n’ Roll, as I understand, was originated by two young moms who learned up close and personal what Spinal Bifida was all about. In a bit over a half dozen years, this event grew to what we witnessed and participated with. The event was moving, and I’ll share it through my impressions and recurring memories.

• Hmmm, interesting:
  • We walked into a large, banquet room filled with hundreds of people of all ages, knowing, but not visually noticing, that it involved families living with spina bifida.
  • We were in the outstanding Frederick Meijer Gardens venue and were able to enjoy the gardens, sculptures, and thousands of fall mums. The most striking sculpture was the enormous Da Vinci Horse Statue.
  • A table of red t-shirts noting “ADJUST BELIEVE OVERCOME REDEFINING SPINA BIFIDA” with the JUST BE ME lined up vertically in the center of the wearer’s chest.
  • Vendors proudly participating in the event with samples of their products but also with their families present.
  • A nurse telling me she has participated for years with her personal children because at work, she sees the children at their lowest. Here, she sees them healthy and having fun.

• So fun:
  • Boys about 2^nd to 4^th grade clad in new, red t-shirts greeting each other with huge smiles as only children can when they see another child who they may have just met or may have seen over the years.
  • Knowing one of the boys who is walking has spina bifida and an obvious friend his age in a wheelchair also with spina bifida.
  • One of the boys doing wheelies and balancing joyfully and proudly on his large, rear wheels.
  • Moments later 4 red, t-shirted boys gathered, chatting, smiling.
  • Young children with lights flashing on their wheels like one sees on some children’s shoe soles.
  • Wheelchair Michigan, proudly wearing her sash and ornate dress, rolling around the room, introducing herself for the award she had won and explaining her ambassador role. She told me she happens to have spina bifida as well but goes around the state greeting people and letting them know that life goes on for people in wheelchairs. (Example of her cutting the ribbon for a new beach access sidewalk: https://www.youtube.com/watch?v=lO_iTiaVTI0)
  • A buzz in the room of lots of chatter, laughter, kiddos moving about the room comfortably, obviously well used to moving themselves around with their wheelchair, leg braces, or other methods.

• Most tender sight:
  • A young child of about 2 years pushing the back of his (apparently) older sister’s wheelchair down the hall.

• Signs of brighter times:
  • Sunshine breaking through the drizzle as we headed out, with my husband and I purposely holding back to watch the excited youngsters and their support groups heading out.
  • Lining up with about a hundred others to roll or stroll about the gardens with the other families and friends, unable to keep from smiling as I watched the kiddos with their flashing wheels and chairs touched with individualizing color and sensing their excitement.
  • Rolling as quickly as I could with my power assist wheels just to keep up with the scores of people who were in the line that began to stretch and thin out a bit. I recall feeling determined NOT to fall behind.
  • A group of probably 20-30 people of all ages, dressed in t-shirts proudly noting the name of the child they were there to support all gathered around and dwarfed by Da Vinci’s Horse.

• Funniest memory:
  • Hearing a voice behind me say, “keep going, we’re falling behind that old lady.” It didn’t take much checking in my peripheral vision to note my grandmother wasn’t walking with me and they just might be talking about me.
    

    

Watch for your blessing in the eyes and smiles of our little ones.

Shalom, Collene

God Moments 1 ~ Mini

At the 2-year mark, post accident I decided it was time to share a bit more of the first days, week, and months, given the years of reflection and the healing of time. I decided I would do that through many God Moments that helped uphold us. However, a celebration blog and other important projects kept me from getting to those blogs. I’m now moved to start those but I’m kicking this off with a present-day one, and then I’ll periodically bring out the earlier ones.

This Sunday morning began with the local weather news showing a nasty band of storms with intense lightning strikes heading our way and projecting to hit just the time we typically leave for church. Remember, being in a wheelchair, which requires two hands for propelling my chariot, leaves NO hands for umbrella protection from rain so rain typically dictates we stay inside. Well, by time we were both ready for church, we had missed the window for getting to Van Gogh before the rain began. This wasn’t just a MI rain storm. This was coming down in torrents. Sitting by our open condo door, I determined I needed to stay home but just then, it slowed a tad so we decided to head out. I was most thankful for our incredible condo board members here who, despite already having the ADA required access to the raised entry sidewalk, recognized that it was across a large, open, exposed parking lot. They took it upon themselves after my accident to add a second ramp which allows me to get between the raised sidewalk to our garage with only a very short area without a covered walk and exposure to the elements, i.e. soaking rain.

Once we arrived at church, we secured one of the coveted van/ramp, blue slashes, accessible parking spots and decided to wait 15-20 minutes hoping for the rain to slow. It was getting close to the start of church and the rain let up only a bit but my husband exited Van Gogh, raised the huge golf umbrella, and came around to where the ramp comes down. The look on his face changed but was unreadable to me. I pushed the button to lower the ramp and realized his look. The water right where the ramp landed was in about 3-4 inches of fast flowing water. A quick look down at my wheels assured me that the wheels would hold me above the water, even if not the hand rims, so down I went and continued to move through the falling rain rather than sit in the rushing water while Alan pushed the button to raise the ramp and close the van door. I looked up to see two angels walking toward me from church in the form of two friends holding their own huge, golf umbrellas. They were able to keep me from getting soaked between the van and the door overhang. Mini God Moment.

As was typical, the service was worshipful and harmonized from the words of preparation through the postlude. The final message in the series on Nehemiah, Restoring Purpose, the Power of Rubble Restored, reminded me of my focus word this year, purpose. Our minister of music and his (guest) brother added richness with their musical talents on piano, organ, blended voice, and trumpet. They sang the hymn of response, Blessings by L. Story, as a dialogue between a typical person’s words and God’s response.

Revised chorus text:

Your blessings come through rain drops. (just this morning)

Your healing comes through tears. (many in the last two+ years)

A thousand sleepless nights (can’t count the number my husband has had)

Are what it takes to know I’m near.

 

Person’s voice in final verse:

What if my greatest disappointments or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy.

What if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise.

 

Watch for your disguised blessings.

Shalom: May all be well, Collene

How to Win …

Instead of me writing this blog, I’m sharing a blog written about me. It is from BraunAbility’s website. To read it, click the title (italics) immediately below.

https://www.braunability.com/blog/2016/05/win-nmeda-local-heroes-contest/