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

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.

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

Creative Problem Solving: Partner Work

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

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

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

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

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

Count your blessing, especially the little ones.

Shalom, Collene