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)

 

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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

Check out “Of Interest” Page —^ (above)

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Morgan Inspiration Island, San Antonio, TX

Amy Skiing!

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

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

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

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

Shalom, Collene

My Personal, Pint-Sized Angel

harper-1

A much-appreciated feature of our church is the many doors equipped with buttons for handicapped access – well beyond ADA requirements. (Don’t you just love when people do the right thing – not just the legal requirements?) On Sundays, part of the effort to make all feel welcomed is to have leaders in the church stand at the door to greet those coming in. A person typically stands by the access button and pushes it for everyone, offering an open door, but especially before an ‘otherwise abled’ person needs to push it.

A few weeks ago, the welcome person had her 3-year-old granddaughter standing with her. Mimi would remind the munchkin to push the button when helpful. I typically make a point to notice the welcoming person, catch their eye, smile, and thank them so they understand how much appreciated this small gesture is. I noticed the young girl and smiled, thanking her. Now, often when adults see my wheelchair, they quickly look away as if embarrassed, shutting down any need for further communication. This serious, little one looked directly at me after taking a hard look at my wheels. “Why do you do that?” she asked genuinely. I rolled up closer, looked her back directly in the eye, and explained in 3-year-old terms how I had been hit by another car just down the road from church. I went on to tell this attentive youngster that this happened when she was a very little girl. I used to walk just like she does, but now I can’t move below here (gesturing midway between my waist and shoulders.) I lifted my one leg to show that it was useless. She asked a couple more questions, I asked her name, and then we both went back to our own tasks.

After the service, I went to the gathering space where coffee is served. It just happens to be near the area where adults meet their youngsters after their church-school. I was delighted to notice this cute munchkin come back to see me. I gave her a big smile and said, “Hi, Harper! Glad to see you again.” This precious one reached out and gave me an unexpected hug. We chatted a bit about what she had done in church school, and we said good-bye. The following week, Harper came up to me where my husband and I sit – back of church where the cutout pews provide space for wheelchairs. She again gave me a welcomed hug, and we talked briefly about her week. Nearly each week she is at the door with Mimi or comes to find me in the back of church before the service starts. We briefly chat about her week, friends, her day, or how she looks.

During Advent, the children were gathered in front of the sanctuary as usual for the Word for Children. The leader was explaining that they would be lighting the pink candle on the Advent wreath. It stood for joy. Harper spontaneously raised both arms, turned a bit sideways, and struck what looked similar to a ballet pose. This was greeted by an immediate chuckle from the congregation. Harper’s pose underscored the meaning of joy in a much more meaningful way than any words could.

The last two weeks Harper has entered the back doorway that separates the sanctuary from the foyer, spotted me, and literally run to me to give me a big hug. What a wonderful way to begin the service and week for both Harper and myself. It didn’t take long for me to realize that Harper is my pint-sized angel. Her greetings are truly a gift of God.

Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. (Hebrew 13:2, NIV)

Watch for your little angels. Shalom, Collene

A Story of Grace

I was asked to speak at our FL church for a stewardship moment. It is at the very beginning of the service immediately after the announcements. If it doesn’t come up, it was Nov. 27 ~ click the “watch” button.

http://www.moorings-presby.org/archive-services.html#

For a second time, my testimonial was called “A Story of Grace” by others. It is.

We all receive blessing. Shalom, Collene

Tears

Here we were on this lovely cruise. We were well fed, well taken care of, in an accessible room, relaxed, sunning, entertained, reading, … But, yet, as I read my book, I was tearing up for the second day. The book was historic fiction set near the end of the Civil War and slavery, written from the viewpoint of the slaves. I have read plenty of books about slavery, slave trade, Nazi suppression of Jews, Dutch suffering when caught for hiding the Jews, Japanese Internment camps, Native American suffering based on the US government’s broken promises and white western expansion, … lots of books about some of the worst examples of humanity. Why were the tears continuing to stream down my cheeks while reading this book, I wondered?

The slaves in this book kept supporting each other with promises from God. Promises like “his eye is on the sparrow” sustained those who were suffering. They had faith that, in the end, God would provide Glory. Eventually it dawned on me. Now that I am living in a wheelchair, I feel imprisoned in a body that no longer works. I have a small sense of what it must have felt like for slaves. In a way, I was like them with no way out of my paralysis, here through no personal choice, benefiting from the love of family who also had no ability to change my situation, … I thought I had always felt empathy for others. What I felt in the past wasn’t as real as it was now to feel the pain of others in similar groups.

Maybe the worst hurt came when I realized that a then-Presidential candidate was mocking others with handicaps like me. Not only did he think it was funny and ok to mock us (or anyone), but he did it while trying to impress and earn the support from voters who also thought it was ok. And, it wasn’t only those of us with handicaps but other groups were purposely targeted and disenfranchised.

Another realization was “in my face.” There was not one excursion off the ship in any of the six countries included on the ship itinerary that was wheelchair accessible. I was told by ship staff that one particular city we visited, of over a million people, did not have one bus in the city that was accessible. How challenging it must be for those with handicaps in such countries. It made me grateful for the many people before me who fought long and hard for the Americans with Disabilities Act (ADA) and Housing and Urban Development’s (HUD) Fair Housing Act (FHA). I also wondered what America some people wanted us to go back to when America was greater than it is now. Prior to ADA or prior to more fair civil rights?

I am reminded of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” I pray for America, Americans, and our leaders. Jesus ate with Samaritans and tax collectors. Our command is to love others as ourselves. Isn’t that how we work to help His will be done on earth as it is in Heaven?

Give thanks for your many blessings.

Shalom, Collene

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