Who’s Out There?

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

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

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

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

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

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Courage and Legacy

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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

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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)

 

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!

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