Courage and Legacy

  

Typically I would put this link (below) under the page on this blog “SCI Of Interest.” However, as I look forward to the arrival of our first grandchild, a little girl, I am thinking back on the hopes and dreams I had of being your grandma extraordinaire. A grandma who made her a quilt, traveled to her new home to help her Mommy and Daddy around the house so they could bond with you, and a grandma who would pick you up, cuddle you, and read you book after book after book so I could help you become literate and a book lover just like your parents, uncles and aunts, and grandparents. There is so much of that I will not be able to do such as sew you a quilt on which I can hand quilt the special touches which are always my favorite part of a quilt – keeping the legacy alive from my great-grandma and my grandma who sewed quilts for me that I still treasure. To sew with the two machines I have; one fairly “new” and one the antique, treddle Singer that Great-Grandma used, had converted to electric power, and on which I learned to sew in 4-H as a ten-year-old; require foot-power which I cannot provide. Yes, I could move the power foot to the table-top and use my right hand but to sew neatly enough for small quilt pieces one needs two hands to align the fabric. I cannot fly out for an extended time to help your mommy and daddy because I cannot climb the steps or provide the help around the house they would need. Fortunately, your other grandma is able to do an extraordinary job at that. I cannot pick you up out of your crib because I need one arm to keep myself upright. I would never risk dropping you. I cannot be there in person regularly to sing you lullabies or read those hundreds of nursery rhymes and stories to you. But, I can, as your daddy reminded me, do other things.

Once again, creative problem solving is essential. I have found options beyond traditional quilting. I can hold you, once you’re placed on my lap, and lovingly rub your back, talk with you, and play silly facial games. I can send you short audio tapes of me reading books so you learn my voice and are enriched by the benefits I, as a former reading specialist, understand. We can FaceTime you so you know my voice and enjoy the stories I select to share especially with you. Now, today on TV, Christopher & Dana Reeves’ son read his words to his younger self of what he learned from his parents. This reminds me that I can be there for you in very special ways – even if not it the dreamed-of, more traditional ones. You will learn about love, learning, family, responsibility, character, giving, faith, self-worth, and so much more from us, your parents, and other family members. You are loved even though you are not yet born.

https://mail.google.com/mail/u/0/#inbox/FMfcgxvxBFlRDSrTRnCjvFJrvqnRpGKj

 

One Who Makes Slow Progress

Sensitive questions are sometimes asked in masked ways. Only a crass person would ask, “So, you making any progress at all on your ability to recover?” Of course not, but friends and family who DO care are hoping and praying that recovery continues and they understandably want to know. Any positive movement would be a cause for celebration. A question that I do get, especially when I haven’t seen someone in a while, is, “Are you in physical therapy?” That sounds to me like a question I wrestled with myself early on. I mean, really, if I (you) work at it just a little harder, I (your) legs, feet, or even torso should begin to work, right? Wrong.

It isn’t about working harder. It’s about a spinal cord that was damaged badly enough from being hit by a fast-moving vehicle and being dragged out of my own vehicle and dropped on my head by a well-meaning, but uninformed passerby, to now block messages from my brain to my body below mid-chest. Therefore, my lower body doesn’t obey those commands that are given by my brain. Yes, I do exercise my upper body religiously and stretch as directed to maintain flexibility. But, more exercise won’t fix what’s wrong. Only a miracle or new medical research will fix it. That’s exactly why my family and I search for related, promising research and share it through this blog. (See Pages: SCI Research& SCI Of Interest in menu bar next to Home.)

Does that mean I’ve given up? Of course not! What I do is measure progress: progress that is made in minuscule steps forward. How do I know I’m improving? Lots of little ways:

• Being able to reach buttons on the microwave touchpad that I used to need a stylus-on-a-metal-pole to activate.
• Being able to bend and reach far enough over the sink to be able to spit after brushing my teeth without needing a small receptacle.
• Being able to bend to retrieve items from the floor – without fear of tipping out. [I reach higher & further and am better balanced.]
• Being able to slide into Van Gogh’s driver’s seat without planning 15 minutes to do so.
• Going outside to drive Van Gogh without forgetting my transfer board.
• Realizing that I am comfortable driving without tensing up and worrying that I would forget how to stop or accelerate at a reasonable pace around corners.
• Realizing that a car started to enter the intersection and I automatically depressed the left lever, which is the way to brake. [Practice pays off.]
• Learning that some bodily functions aren’t on the strict timeline I had when I left Mary Free Bed Rehab Hospital – and others are still on a strict clock. [Fine-tuning workarounds.]
• Baking more quickly. The first time I made blueberry muffins, it took 30 minutes just to get out all the ingredients. Just recently I made them and I had them ready for the oven in a half hour. I still need help getting things out of the oven, unless quite light with an easy way to grasp the tray, but I can usually move the item onto the oven rack. It’s progress.
• Realizing that my husband and I could together prepare a whole meal good enough to invite someone (elderly man at church) or two special people (parents) over without them having to bring any food – let alone bring in the whole meal like during the first years. [Progress with cooking and baking.]
• Being able to maneuver my wheelchair to fit in a space or get out of one without hitting any furniture, cupboard, appliance, or wall as frequently. Note, I didn’t say never, but there are fewer dings, gouges, and smudges. Fine-tuning furniture placement has been imperative. [More mobile.]
• Moving from the first summer of not being able to close the very-tight-fitting door, to being able to close it only if positioned just right with wheels locked, to being in an absolutely correct position but no lock to the wheels, to closing it with a good oomph.
• Having success with one-handed-rolling. Progressing from simply rolling in circles, to very slow progress rolling one hand 1-2 pushes before switching hands for whatever I was carrying and pushing 1-2 times; to that process increasing to faster than a snails pace, to utilizing doors/ counters / handy stable items with one hand and the opposite wheel with the free hand. [More independence.]
• Moving from discussions with spouse from guarded and ignoring the elephant in the room by closing the other out from daily discussions, to occasional ‘used to be’ types of conversation, to honest discussions of losses and what ‘died,’ to laughing and more normal conversations more often. [Real quality of life.]

These small measures of progress are within the context of my 60-something body that is physically succumbing to the ravages of age more quickly than it should. There are some things I cannot control but I’m doing my best to control what I can – my attitude.

I run across acquaintances, friends, or distant relatives who say, “I’ve been thinking about you a lot and I pray for you.” I pray for those who pray for me. I don’t know all their names so I pray in broad terms; God knows their names.

Blessings! Shalom, Collene (aka One Who Makes Slow Process)

 

Haste Makes Waste

If you’re reading this as a SCI survivor or family member, you understand that everything, I mean E-V-E-R-Y-T-H-I-N-G, takes longer to do than it used to. If you’re able bodied in how you move about, here is an insight for you into our world and a reason for you to count your blessings. Given limited time in a day, it is only logical that I work to streamline or use as few steps as are necessary in everything I do. However, my Dad’s adage haste makes waste comes back to haunt me.

Want to hear some of the problems I’ve gotten myself into? Some are embarrassing but I share to remind myself and to warn others of the risks.

• One day it had been raining and my ramp was wet from our earlier stop. We arrived for a brunch at a new venue and finally found a parking spot with an opening on the correct side of the van so I could lower and exit the ramp safely. Feeling like we were in a bit of a hurry, I didn’t make sure my feet were both still on the footrest and also neglected to hook my left elbow around the handle located behind my left shoulder designed for someone to push. I started down the ramp, and it seemed we had a perfect storm. Whether it was the wet ramp, the toe of my shoe skidding down, or my body not hooked and secured into place, but my wheelchair slowed and my body kept going. I quickly found myself lying on the floor of the parking lot at the foot of my van’s ramp. Thankfully my husband was right there and has the strength to lift me back into the WC. Haste makes waste.
• One day we arrived back in our condo parking lot and I decided to quickly release my seatbelt, unhook the security hooks in the van floor, turn 90* to exit the van, and be ready to go as soon as the car stopped and ramp was lowered. I was even feeling a bit smug for ‘beating the clock’ on this series of maneuvers. Imagine my shock when I looked down to watch the ramp’s final decline and noticed my feet. They had slipped off the footrest and were positioned IN the exit opening. I was horrified to see the ramp make its final decent where the top end of the ramp locks snuggly over the van floor. By this time, my shoe toes were being squeezed under the metal ramp. It’s as scared as I’ve been. Of course, I couldn’t feel my toes, and I envisioned crushed bones. I just knew once I got upstairs and removed my shoes, there would be blood pooled inside and I’d have toes that would need immediate attention by highly trained medical staff. While still in the car, I had automatically yelled to stop the ramp’s descent but pushing that button by my husband, of course, couldn’t do a thing to stop it. Using self-talk, calmly as I could, I headed upstairs, noting and thankful I wasn’t leaving a trail of blood. Ok, maybe only the ends of my toes had been damaged. Once I got upstairs, I could have cried with relief. You should know that the shoes SCI people buy need to be half to a full size larger than before. The shoes I was wearing (purchased post-accident) were large enough that the rounded, rubber ends that had been crushed only held open space, not my toes! Well, that’s a rushing mistake I’ll never make again. I now leave ample room between my feet and the ramp that will be lowered and always glance down for a visual on my feet.
• Some wastes, thankfully, aren’t quite that dramatic, just frustrating. Thanks again to the SCI, my digestive system is a bit touchy. I’ve learned that my most reliable yet delicious breakfast is a bowl of steel cut oatmeal. My dear husband, who does the lion’s share of grocery shopping, happened on a 3-minute “quick” variety that I could cook in the microwave. I bought a safe microwave dish for this. By safe, read: light weight, large enough to prevent boil-overs, handles, lid that ‘locks’, and vents for safely draining. My sisters had helped me reorganize the kitchen so the items I need are low and within arms’ reach. Ok, picture me rolling to get out all the needed utensils and ingredients. When I went to grab the (heavy) oatmeal box, I lifted it but not slowly and carefully enough. (Haste) It slipped from my outstretched right fingers and thudded to the floor. Pause. (Waste) Can you picture the next step? Of course, the cover is off, lying next to an overturned cylindrical oatmeal box, with dry, lightweight, granular oatmeal in a heap. Ok, now think what you’d do. Pause. Nope, I can’t go get a broom and dustpan. Nope, I can’t drop to the floor to scoop up what’s there. Nope, I can’t go grab a vacuum. My only recourse was to get out the wastebasket, a piece of stiff cardboard, a spoon, and a small flat-edge device. Let’s just say that the cleanup was a slow process with many repeated moves. The worst part is that I didn’t do this once, but twice. Argh! These days I am REALLY cautious to get a firm grip on that oatmeal box.
• The worst was the time that I got up during the night to use the bathroom. Upon careful reflection, there are three steps I might have short-circuited; I’m just not sure. Bottom line, it was dark and I had a controlled fall from the height of 24” (bed and wheelchair seat height). I was holding my transfer board and the far wheelchair arm as I transferred and felt myself go down to the floor. I broke my femur but it took 4 days to realize something was wrong and a week to realize there was a broken bone that needed treatment. I’ve been transferring for a couple years so it shouldn’t have been a problem. But, once again, any action not extremely cautiously executed can be dangerous. Haste makes waste.
• Driving: I’m beginning to feel like the hand control for acceleration and braking is becoming automatic. Thankfully. But, the wheelchair I carefully position to get ONTO the driver’s seat MUST be in the same position at my destination in order for me to get OUT of the drivers’ seat. Any quick acceleration, sharp turn, or very firm braking can tip the chair backwards or shuffle it out of position. I’ve found that if I leave the transfer board on the wheelchair, it can slip off the chair or exacerbate the chair’s movement. So, another step – sliding the transfer board into the magazine pouch built into the back of the passenger seat. I also need to securely lock both wheels to help keep the chair in place. Guess how I learned I needed the extra step of sliding the board into the seatback pouch? On occasion I also forgot to lock BOTH wheels. Thankfully in both situations, there were people at my destination that I could call out to for some help once the ramp was lowered. Any haste in the steps makes waste.
• There are countless times I have tried to open a door, drawer, appliance, or go through a doorway without making all the adjustments and checks before that move. Bang. Think of a three-point turn in your car. A three-point adjustment to my positioning would be ‘short.’ In order to get close to a wall or cabinet, I roll forward and back repeatedly in short, narrow, angled adjustments to get close enough to minimize damage from banging, scratching, or gouging surfaces.

So, the haste makes waste adage from my Dad is a daily reminder to just plain accept the extended time I need for everyday tasks. I’m thankful that I CAN make these adjustments in my own wheelchair and have good use of hands and arms to help maintain the independence I do enjoy. Appreciate your own blessings of mobility.

Shalom, Collenes

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

Just out from Reeves Foundation

https://mail.google.com/mail/u/0/#inbox/16045e48cd3cf919

Please check “SCI Research” page (above) for the full release. The FDA has just approved fundraising for The Big Idea based on the Susan Harkema, U of Louisville, and others’ research on four men with significant SCI damage. All four men can stand, move their toes/feet, and have improved ‘quality of life’ functions. (read: bladder, bowel, sexual). This is due to spinal cord stimulators. The stimulators in this study are used in unique ways but, based on our son, we know that spinal cord stimulators are used in a widespread way by pain management physicians. The hope continues. If Reeves can raise enough funding and Harkema’s research can progress, many, many doctors could be already equipped to make a huge difference for those with SCI.

B ~ So There, Death: Freedom

(Continued) Do you ever have those moments from a song or talk or sermon that come back to prey on your mind? Moments that seem to be seared in your memory for what they meant to you? I had two this summer that seemed related. Here is B. A preceded this.

I am well aware of the miracles recorded that Jesus performed and also that there were a lot more miracles that were never recorded. Despite knowing them well, here, again, I learned in a startling way what I did not know. One day near Capernaum, on the banks of the Sea of Galilee in Israel, two blind men came to Jesus. It was the first time blind were given sight and there is no record of the disciples ever healing blindness. Ok, I knew that. I also know that lepers were considered unclean, lived apart from others, and were considered to be extremely contagious – untouchable. I learned now that the blind and also others with handicaps (ok, now you get why this caught my attention anew) were all considered unclean, a scourge on humanity, rejects of culture, and certainly not to be touched. Here, these two blind men – who were likely close to death since there were no hard-fought ADA (Americans with Disability Act) laws and they could not see to work, get about, or do much of anything living as rejects of society – declared that Jesus was the Son of David and asked that he heal them. Jesus could have simply announced that they could see, but rather, he chose to touch their eyes and pronounce them healed. He touched them! Through this simple interaction, they declared him the Messiah – Savior of all – and he declared them clean, fit to be touched, and included with society.

Side bar: Here is another eureka for me that I have yet to wrap my mind around.    Perhaps others have the answer I’m trying to come to grips with. In both the tabernacle and the temple, there were levels of access culminating in the Holy of Holies providing only the High Priest access. But, remember the outer levels? The unclean and handicapped could not enter. Pause. Ok, so for 63 years of my life I could have entered the temple. All of a sudden, at 64 I would no longer be allowed access? Maybe I’m too American but I do not understand that – in either Old or New Testament days. Note: the tabernacle and temple were not accessible. Period.

Jesus opened the eyes of the blind men but also gave them liberty, freedom, and inclusion. They were no longer marginalized but had full access to the temple, which was the only space for worship in those days. How accessible are our churches? How welcomed and included are those with a wide array of handicaps to our churches?

Usually in church, it’s the music that moves me to tears. This time, it was the sermon. Perhaps it wasn’t just for me but because of a summer in which we faced difficult loss. There was a lot of sadness including a miscarriage. We tried to support a brother-in-law, a cousin, and a dear friend with cancer. It was also a summer in which we watched a friend die a devastating death just a year after his wife lost her battle with cancer. This left their children and grandchildren without that anchor of support. I was fighting tears throughout the service and trying to get it together with bowed heard during the final prayer. A friend who typically sits in front of our reserved for families and those with handicaps back pews because she needs to leave early, touched me on my shoulder on her way out, leaned down, and whispered, This one’s for you, Collene.

Later this reminded me of finding out, literally by mistake, that the one and only accessible excursion on our cruise, based on their literature as well as assurances on two calls to the cruise line’s dedicated handicap phone number, was only available for those who could stand and climb steps. What? This was in the largest city and capital of the country. Ma’am, the excursion desk staff woman told me, there is not one accessible bus in xx(capital city)xx. Our emotions went from anger to frustration to disappointment and finally to, Wow, thankfully we’re only visiting and not living in this country.

Even greater, I’m thankful that I live in a world where Christ saves us regardless of abilities and gives us life abundantly.

A ~ So There, Death: … You

(First of 2 parts) Do you ever have those moments from a song or talk or sermon that come back to prey on your mind? Moments that seem to be seared into your memory for what they mean to you? I had two this summer that seemed related. Here is A. B will follow.

My husband and I need to arrive almost everywhere we go early because, not only do we need a handicap spot, we need a handicap spot with the blue slash marked area. Apparently many, even with handicap hang tags, do not understand these spaces are designed specifically so those with ramps have space to lower that ramp plus space to actually roll down and off. (But, that’s an entry yet to be written.) One advantage of getting to our church early is that we get to hear our 70-100-voice choir rehearse their songs. I noticed it was Abide with Me one morning and thought, “Oh, good, this is one song that won’t move me to tears.” I had grown up with this song and it seemed a bit slow and ho-hum. Well, I hadn’t heard the rendition by GM, Minister of Music and Director. Our brass ensemble, rather than the full orchestra, was playing this day. The Brass were seated at our directors left with the choir in front of him. As the service progressed and it drew to the choir’s contribution, the words caught me. (Italics added)

Abide with me: fast falls the eventide

The darkness deepens, Lord with me abide.

When other helpers flee and comforts fade,

Help of the helpless, O abide with me.

…

I need your presence with each passing hour.

What but your grace can foil the tempter’s power?

Who like yourself my guide and strength can be?

Through cloud and sunshine, O abide with me.

 

I fear no foe with you at hand to bless,

Ills have no weight, and tears their bitterness.

Where is death’s sting? Where, grave, your victory?

I triumph still, if you abide with me.

I’m not a swearing person or taken to crude language but at this point I am moved and am thinking, so there death! xxx you death! You had your chance but I’m still alive. I’m living to do more – (of what)?

Hold now your Word before my closing eyes.

Shine through the gloom and point me to the skies.

At this point the director has been building the brass and voices but he’s demanding even more. He stamped his left foot and dug down-and-out with his fisted left hand to inspire the brass.

Heaven’s morning breaks, and earth’s vain shadows flee;

And, now, instead of the soft pianissimo I am used to hearing with this song, the director digs down-and-out with his right hand to inspire the choir to give all they have for:

In life, in death, O Lord, abide with me.

(Henry Francis Lyte)

Whew! Death, you did have your chance with me. I was at death’s doorstep, unconscious, and on life support for days leaving my family feeling helpless and praying as much as they dared and as boldly as they dared. Little by little I’ve gotten to this point. Not easy for my family or me. But, here I am and I’m still working to be as independent as possible. I’m asking God to abide with me and bless the work I’m trying to do. It’s certainly not what I expected to do or much of anything that involves moving about. Thankfully, we live in a world of being able to communicate with the keyboard and Internet. Is that what I’m to do? Am I to be here longer for our children and families? Is my manuscript going to be accepted and published? It seems the message I have to share is crucial for mobility challenged children, their parents, and health personnel. What message am I to share through my blog? I will trust and watch how he abides with me, not quietly but working to the fullest I can. So, there death! Take that!

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