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

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9/11/01 ~ 15 Years and Counting

Where were you when you first heard, then watched a plane crash into one of the twin towers of the NY World Trade Center? Each of you reading this will be able to quickly bring back the place, people, surroundings, feelings, conversations, uncertainties, immediate thoughts of the safety of personal loved ones, horrific images, … and, the rest of the day as well. This is a time for each to remember personal experiences and implications – not those of mine. … … … … Vivid and poignant, aren’t they?

It is hard to think such vivid memories are from15 years ago. Aren’t there things you wish our country had done differently since then? Aren’t there things you wish our world had done differently since then? Aren’t there things you wish you had done differently since then? I do! None of that can change. We can only impact the future. The Iroquois Nation said, “In every deliberation we must consider the impact on the seventh generation…even if it requires having skin as thick as the bark of a pine.” I believe that is wise advice. In order to do that, we must study, think on, and then teach our family and share with our friends the “true north” in our lives, what we believe, what we trust, and what we value. May it be for Good and not for harm.

This morning I received a message from Cheri Lovre, the well-known and respected expert from The Crisis Management Institute, who helped me and many school leader friends deal with school crisis situations like suicide and the Amish school shooting personally, to the Columbine school shooting on a more national scale. Cheri closed her note with the following:

“I would hope for all of you that you find time for reflection on the preciousness of every moment, the treasure it is that we have for those who love us and those to love, and the opportunity for each of us to continue to strive to make a difference by bringing more than tolerance…by inspiring love in all corners of our world…or in the words of my favorite prayer, ‘to rise above the differences and distinctions which divide us…’

 “May we all bring the light of hope to those around us, most especially to the children and youth in the hallways of our schools. Never underestimate the encouragement you bring to students’ lives by your loving presence. Live is fragile. Fill it with goodness!”

Watch for your blessings – and be sure you are a blessing to those around you.

Shalom, Collene

A Challenge & Van Gogh: First Anniversary

Yesterday marked the first year anniversary of our amazing Van Gogh. Because of the gifts of NMEDA and the adaptation of BraunAbility and Clock Mobility to our Toyota Sienna, we have been blessed with a year of closer-to-normal abilities to get in the VAN and GOgh.

In the second half of that year, I have written the manuscript of an information text (children’s book) which is written from the voice of a child in the preschool years though HS graduation facing mobility challenges. The various, growing children (male/female; many physical causes; all races) are tackling and accomplishing many day-to-day as well as atypical tasks with the attitude of Sure, I Can. My challenge for this summer has been to find a publisher who will take a look at this manuscript and, hopefully, decide that it is worthy of publication. I know this is a concern of families of children who are impacted and holds a powerful message for all educators and all people who come into contact with persons with mobility challenges. (Read: everyone!!) I need an illustrator and a publisher. I know they are out there. We just need to get connected.

Just this week I learned about a young grandchild of precious friends who has one of the diseases addressed in Sure, I Can and will be facing mobility challenges. This is a message his parents, siblings, and those who love him need to read.

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

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Creative Problem Solving: Partner Work

Wheel cover closeWheel_Table_Cockpit_Teak cupholder_InstrumentsRaftOffThere was a time I sewed most of my clothes. No one knew unless they were an accomplished seamstress themself and noticed telltale signs such as the plaids all matched. I knew which patterns fit me best. Butterick was first, followed by McCall’s, but Simplicity was better for a taller, thinner seamstress. Vogue seemed to have more complicated and sophisticated patterns. I knew to adjust the pattern and shorten it about a ½” to ¾” between the waist and hips so it fit me well. I designed and made my own wedding dress. I modeled it later in a fashion show and was asked to rent it out. (No) I took a couple tailoring classes and made dress pants for my husband. Occasionally, I made coordinating outfits for our young sons – coordinating, not matching. I recall one with marine blue shorts and multiple, primary colored, striped knit for the shirts. I made myself a skirt with a sailboat applique in the same fabric. We looked so fresh and nautical, of course.

Once a busy family and full time work were our focus, sewing became relegated to repair projects. With our sailboat in The Chesapeake Bay, the intense UV rays eventually took their toll on canvass and thread. A few years ago, the canvass and sails needed some repairs so I borrowed a heavy-duty sewing machine designed for sailors. As a paraplegic, I no longer sail but when our sailboat was launched this year, my husband mentioned that the seam on the wheel cover ripped and needed repair. I told him to bring it home and I’d give it a look. Well, stitch-in-time-saves-nine was not utilized. I realized it was simply a matter of the sun’s UV rays destroying the thread. The French seam hadn’t ripped; it has simply separated for about a 4’ length. It was a simple fix – if one had a foot to control the electric sewing machine pedal and two free hands to maneuver the fabric into place.

You need to picture the wheel cover. On a 36’ sailboat, the helm station is mounted on a stainless steel, tubular tower 5’+ tall. It holds the compass, several navigational aid monitors, GPS & radar charts, and the steering wheel which has about a 4’ diameter. There is a teak, 4-cup holder mounted high on the stand, opposite of the wheel. Best to keep the crew hydrated while sailing and the water bottles or soda secure. Below that we added a teak table which we could raise perpendicular to the floor, with sidepieces that fold out on hinges so our family of 4 could eat once we were back in port. It was a wonderful set-up for our decades of family sailing in Lake Michigan. Of course, sailing The Bay in more recent years, with regular raft-offs, the setup served well for happy hour as well. My point in the description is that the cover for this is a pretty large, fairly heavy, cylindrical piece of Captain Navy, Sunbrella fabric. When I was an in-patient in Mary Free Bed Rehab Hospital, I made a pillow cover in recreation therapy. I used the power, foot pedal on the table to the right of the sewing machine so I could power up with my right hand and guide the fabric with my left. Sewing those four straight seams on the pillow seemed quite simple even when compared to the kitchen towel and skirt I made in first year 4H. However, much of adjusting to new ways of doing things is the opportunity to try it out and give one the encouragement and confidence to take on a project, making any necessary adjustments as they come along. I made a pillow! Whoo-hoo. Why not take on the wheel cover repair project.

My husband and I decided we could handle this project between the two of us. I pinned the fabric back into place for the French seam, closing the 4’+ gap. I placed a hard, flat surface between the layers of fabric on my lap so I could carefully, neatly, and securely hand-baste the fabric in place without catching the backside by mistake.

Alan got out the portable sewing machine and placed it on our dining room table. I was delighted to notice that I had a large spool of heavy-duty, Captain Navy, thread and special needles for extra heavy fabric left from supplies I had bought when we borrowed our friends’ sail, sewing machine. We were going to be in great shape. I filled the bobbin and threaded the machine. I moved the foot pedal to the right side of the sewing machine and my husband and I wrestled the fabric under the sewing arm and needle to where it belonged. Since Alan had never used a sewing machine, we talked through how he would help me guide the fabric and keep it away from getting caught under the needle or moving mechanism. This would be an unwieldy project but we had a plan. I explained my goal in keeping the various sides of the pressure foot specifically where on the seam. The fabric was so heavy that I needed my right hand on the power foot and my left hand temporarily pushing the flywheel to get it started. Once running, we used our three hands to guide and move the competed fabric out of the way. In this manner, we managed to stitch along the right side first and then the left side, topstitching the French seam as intended. They were far from the straightest seams I had ever sewn and I wouldn’t have gotten a top rating in 4H at the local, county fair, but who really notices navy thread on navy fabric when you’re on a sailboat anyway, right? This was special thread designed to be resistant to the sun damage and it would hold for years to come. We had accomplished our goal! It definitely took teamwork and some creativity but isn’t that what life is about anyway? Mission accomplished!

Count your blessing, especially the little ones.

Shalom, 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.

How to Win the NMEDA Local Heroes Contest

Creative Problem Solving

DinnerThis blog will seem more casual and certainly not serious. I feel like I’m a 12 year old telling someone what I just accomplished. It is at the urging of a friend who said, “Those who have been following you will want to know what you’ve done,” that convinced me to write this.

Our current life is about problem solving, some solutions working out better than others. Some ideas work well, others not so much. But, bit-by-bit we’ve borrowed or created ideas that make life a bit simpler. I think often about the years of coaching OM (Odyssey of the Mind). A friend and I coached our children and others from our local elementary several years in this awesome, creative, problem-solving competition. OM includes spontaneous (name as many things as you can that are red and round) as well as long-term (multiple months) problems, and over time the students became amazingly adept at problem solving. Adults could not help so the students, not the adults, would develop their skills.

Alan has been a bit like the OM coaches in encouraging me to do whatever I possibly could. What I can’t do (yet), he graciously does. Things that have remained pretty much in his domain are hot stove and oven tasks. The danger risks are too great for me in my wheelchair. Anything cooking on the stove is above what I can see. Moving in a wheelchair involves two hands at all times or the only place one goes is in circles. There is no way I would put a hot pan on my lap. Well, this week I made the entire dinner which involved two very hot stovetop dishes. Shrimp scampi, angel hair pasta, green beans, and fresh fruit. Not one ounce of help. 😉

After seeing a unique dresser/desk configuration in a friend’s condo, I noticed that our counter stovetop had a drawer face just below the stovetop. I was convinced there was dead space behind it so when our remodel wizard was here one day, he checked it out, verified that the drawer face could be removed, found some long, smooth sliding supports, built a shelf, and installed a hidden 22”x25” shelf which is at a convenient height for me in my chair. I can work on it once it’s pulled out from any of three sides. Our kitchen is galley style and not large. I discovered some and predicted other things; therefore, concluding this meal could work.

  • If I put a heat trivet on the pull out workspace, I can lift a small or medium size pan off the burner and onto the trivet to check on cooking progress.
  • Salted water can be brought to a boil, (check once sauce pan is on the pull out shelf, trivet), broken pasta can be added, lid can be replaced, and it will continue to cook on the burner which has been turned off.
  • Marinated shrimp will cook quickly, and I just needed to add a couple ingredients to complete necessary flavoring. Again, I could move the hot, sauté pan to the trivet to monitor cooking.
  • By having the shelf pulled out all the way, I could position my wheelchair sideways between that shelf and our sink. After positioning a stable colander in the sink, I could reach the saucepan (water no longer boiling) from the shelf and empty it into the colander in one fluid movement, where it could drain. No need to rest pan or colander on my lap.

Lightweight, microwave dishes with handles and vents have long made microwave cooking safe for me. Fruit, well, that is more delicious eaten fresh. Not only was the cooking of the meal successful, it tasted delicious. This might not seem earth shaking but it sure brought a smile to my face. Enjoy the fun and whimsical things in life. Watch for your blessings.

Shalom, Collene

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