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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

Empty chair_Horses

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

Amy Skiing!

Amy Van Dyken Rouen (another Dutch girl & 6x Olympic Swimmer) had her devastating accident about a month after mine. I kept hearing from family and friends that, “On a recent interview, Amy Van Dyken said … just like you’ve been saying, Collene.” I tried to send her a message but couldn’t find a way to contact her at that time. A message I started to her remains on my desktop under her name. That keeps her on my mind and recently I’d begun to wonder how she’s doing. Yesterday I heard another interview of her on the Today Show. I went online just now to find that interview. First, I happened on an interview done a couple months post-injury. Watching her struggle to pull her useless  & “dead weight” legs onto the bed brought instant tears to my eyes as I flashed back to  myself in those difficult days. I quickly fine-tuned my search and brought up this link:

http://www.today.com/video/watch-amy-van-dyken-rouen-ski-for-the-first-time-since-near-fatal-accident-918601795513

As I watched Amy ski, adaptive of course, some tears continued but I realized these were tears of joy over feeling so very proud of Amy – for her determination and what she was overcoming. You will be delighted that you took a couple minutes to view her interview – seeing and hearing her joy while skiing. Listen closely to her comment on how she (read: we) meets walls. We figure out ways to go under, around, over, or break through. We somehow overcome the walls and challenges. Go Amy!

Not sure I need to add the reminder to all of us to watch for our blessings.

Shalom, Collene

My Personal, Pint-Sized Angel

harper-1

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

Wheels on a Cruise

Wheels on a Cruise

Many readers might wonder what it’s like to experience a cruise in a wheelchair. After two cruises on two different cruise lines, I will share my experience. I am not an expert but these are my insights after more than a half dozen cruises, two in a wheelchair.

Getting on and off:

  • Handicap guests complete a form noting specific needs prior to sailing. Ship staff provided everything I noted on that form with the staff on the second cruise even including the bed top at chair level. That was huge! [High bed tops typically found in handicap hotel rooms remove independence from those in wheelchairs.]
  • Parking was convenient & nearby – no need to use a bus to get from the parking to the ship.
  • Staff was visible to help and expedited lines to ease weaving through the intense congestion.
  • Staff was helpful getting me up and down gangplanks when they were not ADA compliant (narrow and steep).

Ship:

  • Longer cruises attract older cruisers.
  • The staff was more than accommodating and always gracious.
  • There were definitely others on both cruises with mobility handicaps.
  • Needs of those in wheelchairs fell in two categories:
    • Necessary: Birth defects such as cerebral palsy (CP), disease such as multiple sclerosis (MS), amputee, spinal cord injury (SCI), etc.
    • Convenient: People who can stand and walk but it has become problematic due to heart, brain, breathing, ambulatory issues, etc.
  • Cruising was convenient because once settled in our room, there was no need to cart around suitcases which are impossible to carry, hold, or wheel.
  • Both cruise ships were around 2,500 passengers. I would consider these to be medium size ships. Both seemed optimal for size. I believe a larger ship would be more difficult to move around. Rolling from bow to stern or stern to bow can be a long trip, especially if necessary multiple times per day.
  • Anyone who likes to gamble can rest assured that casinos can quickly be located due to the smell of stale smoke and a blue haze in the air as one gets close.
  • Most ship floors were carpeted which was never easy. Some of the hallways had hidden dips which threw the chair to one side then the other so I sometimes looked like a drunken sailor. Both ships had a floor that had an outdoor walkway from bow to stern. This was a hard surface and much easier to navigate.

Stateroom:

  • Rooms were larger to accommodate a wheelchair plus provide the ability to wheel around room and bathroom. Note: anyone who needs a scooter or wheelchair for convenience must keep it in ones room. None can be left in hallways.
  • Bathrooms were uniquely designed with a roll under sink, no curb to the shower, a fold down bench, and flexible (reachable) showerheads.
  • The first cruise line had a special stateroom entry door. When pushed, it continued to open and stayed open for about 30 seconds when it slowly closed on its own or it would close with a gentle nudge. The other cruise had a heavy door which was difficult to open unassisted.
  • Even handicapped rooms were carpeted which surprised me.
  • Most passengers in common walkways were accommodating of the chair and moved to the side. Not all, however.
  • Rooms near an elevator were more efficient. Our room on one ship was about midway between two elevators. Since hallways were carpeted, that repeated trip was difficult.

Shows:

  • Shows were accessible only on the main level, not from the balcony level. Our most recent ship had two accessible areas, one near each entry door. The one had an area free of fixed seats where one could bring a wheelchair. The problem was that the fixed chairs in front of us were high, thus blocking the view of the stage. The other was an area that accommodated about 3 wheelchairs, scooters, or companions on available folding chairs. The view from there was unobstructed and nearby fixed chairs were available and marked for companions.
  • The MC announced prior to each show that the seats marked for handicapped were to be respected. Not surprisingly, there were typically some who loved the convenience of the area and sat there anyway. I was often reminded of a posting I saw once from another SCI acquaintance, “Stupidity does not qualify as a handicap for reserved parking” (or seating).

Dining:

  • Dining was accessible. One cruise had assigned tables and staff removed a chair. The other cruise had flexible seating hours and locations. Staff was excellent about helping push me across the carpet which tended to be the thickest on the ship and also removed a chair to provide space.
  • We preferred to eat in a dining hall and enjoy the service. Cafeteria style eating was more difficult. I would need to rest a plate precariously on my lap. On one cruise, staff would notice and offer to help me. On the other cruise, either my husband or I needed to ask for assistance. The thing I learned quickly was that staff wants to be very generous with helping sizes. Even requests to scoop a very small amount resulted in medium to large scoops which culminateded in an over-heaping plate for me and an awful lot of waste. It’s possible that the language was a barrier.

Excursions:

  • We did not find one accessible excursion on either cruise. Some excursion descriptions noted that customers needed to get into the bus or van independently or with assistance. One trip was advertised as completely handicap accessible for those in wheelchairs. Both cruise lines had a designated phone line serviced by staff trained in handicap needs and facilities. I called the special line twice, speaking with two different people who both assured me that this particular excursion was, indeed, a good solution for me, a paraplegic. It was not. The on-board cruise staff had all my information regarding handicap needs. Even though they knew it was not accessible, they made no effort to notify us ahead of time. We only learned by chance the night prior to the excursion. When we asked, they promised to refund our money by mail but there was no effort on their part to make up for it.
  • Some but not all ports have a place for those in wheelchairs to get off and explore at least a bit. Some allow direct access into town and others have a small area with shops in which to browse. By observation, these occur either in very large cities or in more remote docking areas where local vendors or cruise lines build small shops and a simulated taste of the island or country.
  • Any port that requires tending off the ship (using smaller boats to get to land from an anchored ship) is not wheelchair accessible.
  • There remains a lot to do on a cruise ship even if one cannot get off. Be sure to bring books to read.

All things considered, cruising provided wonderful experiences.

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