5 Years and Counting

Sailing The Bay

Over five years. A long time in many ways but also short in other ways looking back. When one of our pastors preached on Matthew 25:35-40, something hit me. I’d heard sermons on this for years, but this time it was like eureka, perhaps because five years had recently rolled around since the accident. Before now, I never saw myself as the one Christ pointed to as being needy.

“For I was hungry and you gave me something to eat, I was thirsty and you gave me      something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison, and you came to visit me.’ 

“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

Collectively, family, neighbors, friends, and colleagues fit the description of ‘seeing you hungry and feeding you, … thirsty and giving you something to drink, … needing clothes and clothing you, … sick and going to visit you?’ My Lord will reply to these precious people, ‘Truly, whatever you did for this sister of mine, you did for me.’

I know that it hasn’t been easy. Our children literally dropped everything to come and support my husband and me – adjusted job responsibilities, studying, and long-awaited vacation; taught me to believe in myself as an N of one; dropped to their knees and prayed for me from across the world; encouraged me; came or texted to visit; answered medical questions; found encouraging research; sent flowers; prayed; … You and our sisters realized I had few casual clothes that were appropriate for using a wheelchair and several magically materialized. It goes on and on.

A couple close friends met Alan at the airport, brought him to the trauma hospital, and provided crucial support. One neighbor drove my visiting sister to the local hospital and then again to the trauma hospital. One couple insisted on Alan using their car. Our family repositioned cars and ensured that we had safe transportation between hospitals, rehab, and home. You created, designed, repurposed, built, and/or reorganized to make our home and lives more accessible.

Some of you visited in the rehab hospital. Some visited at our home. Some helped clean. Some made a quilt or prayer shawl. A friend mobilized meals to be brought in; many made food but then also came and ate with us. You talked about normal life, which is what we desperately needed. You’ve encouraged. You’ve sent cards, emails, texts, and phone calls. Relatives and friends in multiple states and around the world voted for us in the Local Hero (NMEDA) accessible vehicle contest. You, and your friends who we don’t even know, voted for Van Gogh for us! You prayed for us both as we healed, transitioned, and worked to develop a life that is as normal as possible.

Some of you knew me before the accident and prayed hard for both of us. Some brought cheery flowers. There are others with whom we had sailed. We had built wonderful memories of our sailing years in The Bay. In those years, we ate together, drank together, sailed together, laughed together, explored together, endured storms together, celebrated holidays together, and just had fun. After the accident, you did not disappear from our lives.

There are many, who we hadn’t even met before the accident, who have accepted me for who I am, not how I move about. You helped me feel so normal that I often forget the wheelchair when we’re together. You’ve encouraged and accepted me as is.

Some reading this only know me through this blog. You readers are from 50 countries including all continents except Antarctica. That is humbling. I often wonder why you read this. Some might because you also have a Spinal Cord Injury (SCI). Some have loved ones or acquaintances with SCI and are looking for techniques, tips, break-through research, answers to questions, or coping strategies. Others are curious. It is those especially who are learning about living with SCI and how life has impacted us greatly. I trust you are more sensitive, particularly when it comes to parking, steps, curb cutouts, and a lack of entitlement. Some learned to watch for your blessings, and in doing so, remind us to watch for ours.

Life isn’t the same – never will be – and my family, especially, carries more responsibility than they should have to. I trust they and friends will never forget how I love them and appreciate what they do. More than that, Jesus notices and says that doing it for me is like doing it for HIM. Wow! What a gift. A blessing.

I Only Wish It Were Fiction

Sometimes people doubt that what they read in fiction could be true. Who would really do that? I only wish the following were not true. Unfortunately, they are.

My husband and I decided to go to the Coast Guard Festival but went the opening morning even though the real action and fun occurs weekends. Experience taught us the scarcity of parking spots for a handicapped [H] vehicle, especially one designed for vans which provide space to lower the wheelchair ramp. Obviously, any town with a Coast Guard Festival is on the water and already very popular.

We arrived and immediately went to the parking area set aside for [H] vehicles near the channel. Nope, that section was closed and instead held enough proverbial junk food trailers to keep several dentists in business. Everyone needs an “elephant ear” sugar-laden pastry at a festival, right? The alternate [H] parking area was not indicated in any way we noticed. However, we knew of out-of-the way, overflow parking tucked between the state park camping and the channel. We were delighted to find a [H] spot and it even had the slashed line section for vans. Our lucky day!

After enjoying a taste of the festival (not literally), we headed back to our van. Here is where it got interesting. A car with a [H] hangtag was parked next to our car but it was parked half in their spot and half on the slashed space. (Infraction) Luckily we were in angled parking so we hoped our lowered ramp, at this angle, could avoid their front bumper. My husband and I came around the back of our car, him holding out his fob about to push it and lower the ramp and me rolling up. Oops, in the slashed space that remained, the car occupants had set out their lawn chairs and were watching the boats going through the channel. They could have set their chairs on the sidewalk in front of their car but chose not to do that. (Rudeness) As they saw us, the woman asked if she should move. (Duh) We thanked her. Her husband stayed planted on his chair. The ramp was lowered, barely missing Mr. Rude, and I maneuvered my way back and forth so I could manage to position my chair to get up the ramp while avoiding damaging their vehicle. “You know,” I bravely and cautiously commented, “you really shouldn’t be parked on the slashed lines. That’s for ramps.” “Oh,” quipped Ms Rude, “it’s hard for my husband to park.” I bit my tongue and refrained from saying, “Well, it’s hard for us to lower the ramp without hitting your vehicle, leaving a crease in the metal, or rolling around the end of the ramp without gouging your car.” Sometimes it’s better to take the high road.

If only that were the only incident.

It takes arriving early and often driving around to find a [H] spot designed for a van. We appropriately park next to the slashed lines either straight in or backed in, dependent on which side the extra, slashed space is. Imagine our surprise and consternation to return to our van, not once but twice (!!), to find another car sandwiched between the two legally parked cars, right on top of the boldly, slashed lines! The first time we saw this we were stunned! My husband backed the car out into the drive area blocking traffic where we could, as quickly as possible, lower the ramp and get in. The second time, we were fed up and prepared. I now have the local police number programmed in my phone. I called the dispatcher to report the situation. She said a squad car would be there within 20 minutes. As promised, the car arrived in about 18 minutes; blocked traffic in the busy parking lot; prepared to write the ticket for the offending car; and said we could safely pull out, load up, and leave. Thankfully, my husband could drive. If it had been only me, even with the offending car ticketed, I would have had to wait for the offensive driver to return. On both cases, the car was so tightly parked that I can’t imagine how the driver or passenger could squeeze out. Having it towed would have been the other option. (More expensive) If the rude people had just arrived and were doing some shopping and dining over a lovely meal in this quaint mall, I would have been at their mercy. This was a repurposed, fishing cannery. It had obviously been grandfathered and had not upgraded their restrooms to ADA requirements. The stall in the mall bathroom marked ‘handicapped’ would not even allow my wheelchair to enter, let alone have the door close. Yes, I reported that to the manager of one of their restaurants. Yes, he had heard the complaint before and would pass it along -again- to the establishment management.

What can be done?

• I believe we all need to advocate for what is right.
• Don’t park in a marked handicap spot unless you have documented and current accessibility needs.
• Even if you do have a tag to hang on rear-view mirror or permanent [H] license plate, use van-marked spots ONLY if you need one or it is the only spot left.
• Call police if you see offenders. The police need to see the car incorrectly parked. A photo of the car, its license plate, and the sign are not enough.
• Never use a tag unless it was given to you by a doctor and then for only as long as it is needed. Never share it with others. It is abuse; it is illegal.
• It is illegal to misuse handicapped spots. Penalties range by state but are up to $1,250, 6 months in jail, and 50 hours of community service.

Hats off to Texas where Park Houston trains volunteers to monitor and write tickets for those who abuse handicap parking spots.http://www.houstontx.gov/parking/volunteer.htm

Count your blessings. Shalom, may all be well with you. Collene

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

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

Parking in the Big “Blue Space”

Handicap parking spots exist by law to be used by disabled persons. Sometimes it is a matter of convenience so those with difficulty walking have less far to walk. Other times, it is a necessity because people cannot walk. Typically the extra wide spaces are needed for vans but not always. Occasionally a car door must be opened the full width and a wheel chair moved in from a wider angle than is possible without damaging the vehicle in the adjoining spot. Note, because you, your relative, or a friend once legitimately needed a handicap hang tag but the medical condition has improved or no longer exists, the placard may no longer be used to snag convenient spots. It is not legal; it is not right.

I am well aware that appearances can be deceptive. I had a friend and colleague who had a brain tumor. Thankfully, the surgery was successful. She could walk and appeared able bodied, however, walking more than a short distance was dangerous and not possible. She didn’t appear to need the handicap spot but she actually did for a period of time. I observed something recently that I cannot for the life of me figure out was a legitimate use of a handicap placard and spot.

We attended a lecture at a facility we enjoy. As we’ve learned to do, we arrived early to get a handicap spot that would accommodate my needs. Upon arrival, I noticed a woman was already in the most prime spot, hung a tag on the rearview mirror, popped out of the car, and walked in what I can only describe as a perky walk into the facility. This place has a delightful hors d’oeuvre setup when members arrive. When we went into the auditorium to find a seat, this woman was already seated along the center aisle toward the front. During the time prior to the lecture, she popped up no less than four times to move to the back and refill her plate or glass or dispose of her things. Each of these times, she proceeded in her perky manner. Immediately after the Q/A session ended, she jumped up and quickly maneuvered through others down the aisle and out the building. By time we got to our car, she was leaving the parking lot. Now, perhaps, she had a legitimate need for that spot set aside near the entrance and wide enough for handicap access to the vehicle. I certainly saw no sign of it. If she once had a legitimate medical need, I’m so happy she appears to have improved to this point.

It is wise to know the rules for the blue spaces:

If you have a disability parking placard or license plate:

• You must either be the driver or a passenger of the vehicle to park in a disability parking “blue space.”
• Don’t park on the blue striped lines needed by vans with wheelchair lifts or ramps.
• Disability parking anywhere in the U.S. is available to you.
• Hang the placard from the rearview mirror. (Remove when driving.)
• NOTE: Vehicles with a disabled veteran plate need to use a disability-parking placard or obtain a red handicap sticker for their disabled veteran license plate to park in a “blue space.”

It is against the law to:

• Loan your disability placard to another person.
• Knowingly use a disability placard that has been canceled or replaced.
• Use a disability placard or plate when the disability no longer exists.
• Use the disability placard or license plate of a deceased family member.
• Copy, alter, or forge a disability placard or license plate.

Penalties:

Penalties may include fines as high as $1,000 and up to 6 months in jail.

People are encouraged by the MI Secretary of State (SOS) to report violations to the local police. I for one will happily report infractions. You may choose to as well.

* The “blue space” rules comes from MI SOS but the fines and jail time vary by state and reflect the research I have done.

Count your blessings.

Shalom, Collene