Queen of Hearts

It was a long time ago, maybe 1983, when we met and became friends. We were both far from home,  so friendships were especially appreciated. She was a lot of fun to be with and easy to talk to.  As Army wives, we both moved on from that place to go to many other places, but stayed connected the way people did back then, with home addresses.  Both of ours changed every 2 to 4 years, but we kept current. It’s been fun to catch up on news through Christmas letters.  We have watched each others’ kids grow through the years in pictures and read about the other’s life events.

One time, during those years, we found ourselves in their area and had a great visit with them  during Sunday morning breakfast. Once they found themselves passing through our area, and we had a nice visit then.  She knows of my  struggles with MS and she’s aware that Mr. Legs faces physical challenges of his own while helping me with mine.

Over a year ago, we started receiving greeting cards from her – the kind that said “thinking of you” or those that had encouraging words.

And the cards kept coming…keep coming, once a week. Usually, a card arrives in the mail saying she is praying for us, or with news from their family, or just letting the words of the card speak for itself.

A card might be serious, or funny, touching or thought-provoking. Each one with a unique flavor of caring.

 

On difficult days, it’s nice to know someone cares. On good days, the cards make things even better. And every day that one arrives, it’s comforting to know someone is praying for us.

 

     

            

This is my personal favorite.

It reads “They say that when  life gives you lemons you should make lemonade. What if life gives you Brussel sprouts?.  Just pondering some deep philosophical things – and thinking of you.”

 

Many of the cards say flattering things about me or us.  What I hope you can see, is how special Denise is.  Every time she signs a card, puts it in an envelope, addresses it and sends it off to us, she is being the hands and feet of Jesus.  Each card is a message of God’s love from a friend who cares.

Denise found a way to show care and concern over the miles between us.  She has, over time, sent a beautiful bounty of blessings and made a difference in our lives by reaching out in love.

 

(Display complements of Mr. Legs.)

 

There are 52 cards in a deck.  Sometimes our physical challenges feel overwhelming, like we have been dealt a difficult hand to play at this time in the game of life.

 

There are also 52 weeks in a year.  Denise sends a card every week.  She places a winning hand of friendship on the table.  Her love lightens the load.

She is the  Queen of Cards/Queen of Hearts.

 

 

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Back in the Saddle

 

About six months ago, a mobility equipment company up the highway and my insurance company worked together to get me a new wheelchair.  It’s quite a machine.

My last wheelchair’s seat tilted back, which is a great feature that allows the user to distribute weight, as needed.  My new chair tilts as well.

It also reclines….and lifts the footplate up to elevate my feet, which helps with circulation.

 

AND, it actually hydraulically elevates up to a foot in height!

Working together, all of those features allow a multitude of configurations for positioning my body.

I also have a specialty Roho cushion with air chambers that can be adjusted for posture and comfort. In the world of wheelchairs, mine is a luxury model.

Wheelchairs and I have a love-hate relationship. I hate that I need one, but I love that they are available to me. Without a wheelchair, I would go nowhere. With an electric wheelchair, I have not only mobility, but am allowed independence and comfort.   In the perspective of our world, having the kind of wheelchair I do makes me feel spoiled.

While I am grateful for good insurance and today’s technology, there are daily annoyances when using it.

• Wheelchairs are big, especially mine.  When I was a walkin’ woman, I stood at 5’ 11”.  Aside from some awkward preteen years, I embraced and enjoyed my height.  In a wheelchair, however, my height actually works against me.  My long limbs and torso require a deeper, wider and taller wheelchair than a shorter person would.  In a room of standing people, I estimate that the size of my wheelchair takes the space of three  people; so when  I’m in my chair in public, I feel big and always in the way.  Even if I’m not in it, it takes up space.
• Wheelchairs make noises.  The click, click, click of its starting and stopping is loud and repetitive.  Whenever I reposition, there is a whirring sound.  It rattles, and creaks, and squeaks….let’s just say you can hear me coming.
• Wheelchairs require maintenance.  Care must be given to adjusting or replacing parts.  It should be dusted and/or washed regularly.  Batteries must be monitored and charged.
• Wheelchairs have different movement speed options.  Attention must be given to being on the right setting before moving.
• Steering is important and driving a wheelchair takes practice.  Bumping into walls and corners should be avoided.
• Headrests, no matter what shape and size, always give the appearance of ET’s head.
• The varied terrain under the wheels can mean a smooth and pleasant or bumpy and scary ride.

All of these irritations can add up over time.

When I am on my chair, I am thankful for its comfort.  Transferring in and out of it is becoming more difficult.  I do, at times, send Mr. Legs on his way without me and let him know by text when I am safely back in my chair.  One day, in an effort to be lighthearted, I texted that I was “back on the saddle”.  And as I typed it on my phone, I liked the sound of it and the image it gave.

I decided that riding a horse was a lot more appealing than riding in a wheelchair.  I mean, haven’t most girls, at some point in their lives, at least imagined galloping through a field  on a beautiful mare or stallion?

Horses are a lot like wheelchairs.

• Horses are big.  You have to have space for one, whether you’re using it or not.
• Horses make noises.  Their hooves thump on the ground or click on the pavement.  They chomp at the bit and neigh.  
• Horses require maintenance.  They must be fed, watered, shoed, and cleaned up after.  Grooming and exercise are important.
• Horses have different movement speeds. Low speed is a walk, faster is a trot….a canter even faster.  Moving over rough ground feels like a gallop, high speed like a race.  Uneven pavement is like jumping a fence. Transferring onto a wheelchair can feel like mounting a horse.  Horses must be given proper commands.
• Steering is important and riding a horse takes practice.  
• Riding on a horse can be bumpy.

Yes, there are similarities.  Riding a horse sounds and seems nicer though, even romantic.  And so, when the annoyances of my wheelchair start to bother me, I will try to think that I am actually riding a horse.  It might make needing a wheelchair a little more appealing if I view it as a companion with a name and personality.  Yes, in my imagination, I will be riding a horse….and I shall call her Trixie!

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Words

It was in the winter of 1986 when I had my first MS symptom. It was peculiar and concerning that my vision was blurry in one place (as if someone had smeared Vaseline on an area of an eyeglass lense).  I would find out later that it was optic neuritis, a common first symptom of multiple sclerosis.

I went to the doctor and, after hours of waiting and examination, heard the words “I’m pretty sure you have MS”.  After that, I had testing done and saw a neurologist; who joined in the suspicion of MS, but was unable to diagnose it at the time.

My vision slowly returned to normal in the following weeks, so my visual disturbance was temporary.  MS did not re-visit me for many years; but the disturbing words “I’m pretty sure you have MS” found a permanent place in the fear section of my memory.

A couple of years later, we had moved across the country and bought a house, only a few hours from our families. My father was sharing his carpentry skills during some weekends to make home repairs and improvements for us.  I appreciated his skill and that he came to help us.  I enjoyed the time with him and watching him work, while trying to keep my two-year old out of the way.

We had many conversations during the times he was fixing things.  One weekend, he was working on a loose screen door.  As he sat on the floor, screwdriver in hand, I stood and watched his expert eyes and hands finding the problem and then finding the best solution.  As he worked and I watched, we exchanged glances and words.

He shared that he had recently attended a high school reunion.  He told me about a friend of his who had MS and had come to the reunion in a wheelchair.  He sadly told about seeing his friend in such a weakened and crippled state, the conversation they had, and the words his friend said to him while shaking his head back and forth …”this is no way to live, Jim.  This is no way to live”.

I stood there, absorbing his words. I kept watching him work with the screwdriver.  I stared at his sad face, then at the door, then back at the screwdriver,….. and I didn’t know what to say, so I said nothing.

I knew I had MS, but my Dad didn’t know that.  I had never told him.  And I didn’t tell him then because I thought it would be too difficult for him to hear.  I couldn’t think of a good reason to tell him.  My MS had been quiet, so I was too.

Dad died about a year after that visit.   I had never told him that I had MS.  Dad never saw me walk funny, or use a walker, or a scooter, or a whompin’ big wheelchair.   Dad never realized the loss I would experience, never saw me in pain, or knew about the guilt I would feel.  And he never knew the impact that those words had on me.

The words Dad’s friend said to him, and then Dad said to me, lived in the fear section of my memory next to the words “I’m pretty sure you have MS”.  The words surfaced many times over the years when I thought about my dad, or my MS, or both.

Something has changed though.  I still remember the words, but I‘m not afraid of them anymore.  I am now likely at the same place as Dad’s friend was when they met at their high school reunion.  MS has now done to me what, years ago, I feared it would do.  Like Dad’s friend, I am weakened and crippled and in a wheelchair.  I understand how Dad’s friend felt.  I don’t, however, agree that this is no way to live.

Because of MS, I cannot do things for my children like my Dad did for me.  MS is a sad way to live.  Managing doctor appointments, medication, mobility equipment and isolation doesn’t leave much time for other things.  MS is a frustrating way to live.  A progressive illness requires dealing with loss, coping with grief, and being resourceful enough to find new ways to do things.  MS is a challenging way to live.  Losing independence and dealing with isolation takes adjusting.  MS is a difficult way to live.

Living with MS at this stage of progression is sad and frustrating and challenging and difficult.  It is, however, the way I have been given to live and is my only option.  It isn’t no way to live as Dad’s friend said –  it is a way to live.  There are better ways to live, but there are worse ways too.  Life, regardless of its circumstances, is precious.  Long ago, I read this sentence:  “Do what you can with what you have in the time you’re allotted.”  That’s how I’m trying to live.

If Dad were here today, I would tell him “This is the way I have to live, Dad.  Life with MS is difficult, but it’s the way I  have been given to live”.  And I  imagine my Dad would have the same compassion for me that he had for his friend…and more.

 

 

 

 

Alma Dotin

It’s a mystery, this old book.

My aunt found it while going through items in her home.  It’s the same house her parents lived in for many years. They were loved by many family members through the years and they were responsible people.  As such, their home became a depository for the belongings of loved ones who had passed and left them in charge of their affairs and belongings.  There were piles and boxes of miscellaneous things that had likely been mixed together as they were shuffled by hands over many years.  The book has no date, but it is certainly old and shows it’s age.  She sent it to me.

The back of the book shows a name.

Alma Dotin.

I was excited to see a clue.  However, the name is nowhere in our family tree., so it is still a mystery who Alma was or what her connection might have been to someone in the family.  All these years later, Alma’s book landed in my hands.

I opened the cover.  The inside page looks like this:

Turning the pages almost felt like trespassing through someone’s private journal.  As it reads on the first page, the book began as an English class notebook. Inside is an interesting combination of poems, song lyrics, notes, scenes from Shakespeare, etc.  One section is hand written directions for games to be played in groups.

 

It also appears to have been reused later as s music book as Alma, or someone else, taped sheet music on top of the English notes.

In the back of the book are words of patriotism. I did an internet search for the words and discovered they are well-known and authors were easy to identify. It’s wonderful that Alma took the time to hand write the words. I have coupled the handwriting with the printed, easier to read, text, and I am including them here.

I believe that, with all the controversy about our national anthem and our flag, these words show a history of what our nation’s flag meant to its citizens years ago; and what it should still mean to us today.

Song

I know three little sisters,
I think you know them too,
For one is red, and one is white,
And the other one is blue.

I know three little lessons
These little sisters tell;
The first is Love, then Purity,
And Truth we love so well.

Hurrah for these three little sisters,
Hurrah for the Red, White and Blue.
Hurrah, Hurrah, Hurrah, Hurrah,
Hurrah for the Red, White and Blue.

L. McCord

 

God Save the Flag

Washed in the blood of the brave and the blooming,
Snatched from the altars of insolent foes,
Burning with star fires, but never consuming,
Flash its broad ribbons of lily and rose.

Vainly the prophets of Baal would rend it,
Vainly its worshippers pray for its fall,
Thousands have died for it, millions defend it,
Emblem of justice and mercy for all.

Justice that reddens the sky with her terrors,
Mercy that comes with whitehanded train,
Soothing all passions, redeeming all errors,
Sheathing the saber and breaking the chain.

God bless the Flag and its loyal defenders,
While its broad folds o’er the battlefield wave,
’Till the dim star wreath rekindle its splendor.
Washed from its stains in the blood of the brave.

-Holmes

 

Song – Hurrah for the Flag
There are Many Flags in Many Lands

 

There are many flags in many lands,
   There are flags of every hue;
But there is no flag, however grand,
   Like our own “Red, White and Blue”.

 I know where the prettiest colors are,
  And I’m sure if I only knew
How to get them here, I would make a flag
  Of glorious Red, White and Blue.

 I would cut a piece from an evening sky,
  Where the stars were shining through,
And use it just as it was on high,
  For my stars and my field of blue.

Then I’d want a piece of a fleecy cloud.
  And some red from a rainbow bright,
And I’d put them together, side by side,
  For my stripes of Red and White.

 We shall always love the stars and stripes,
  And we mean to be ever true
To this land of ours, and the dear old flag,
  The Red, the White and Blue.

 Then Hurrah for the flag,
 Our country’s flag,
It’s stripes and white stars too.
  There is no flag, in any land,
Like our own Red, White and Blue.

–     Howitt

 

The book still remains a mystery in some ways; but all these years later, tattered and worn, Alma’s writing has been read and appreciated.   Hats off to you, Alma, whoever you are.

 

10 Things to Know Before Buying a Wheelchair Accessible Vehicle

Now that we have had our modified minivan for a number of months, we made a list of things that may be helpful for others to know before making a similar purchase.   We share the information not to influence a purchase one way or another, but to inform and prepare potential buyers.  Most of this seems like common sense, but this is a complicated purchase that involves more information and emotion than buying a regular vehicle.

1. Preparation.  Do internet searches and consider these options:

• Where will wheelchair user sit (driver, front seat passenger or middle area)?
• Rear entry or side entry ramp for wheelchair?
• What make/model, features and color do you prefer?
• What make/model can you afford?
• Would you qualify for federal, state or local resources to help pay for the van?  If you are a military veteran, have you checked with the Veterans Administration?
• Check for government grants.
• Inquire about assistance from national and local disease support organizations.

2. Price. While the cost of these vans is daunting, it is helpful to think of the price in two parts: (1) the price of the van itself, and (2) the price of the modification.  While the price of the modification is normally not negotiable, the price of the van may be.  Do your homework by looking up the value of the make,  model and year of the van on www.kbb.com and/or www.truecar.com and negotiate that price if possible.  There are add-on items in the cost of the van that can be negotiated as well (see below) – ask that they be included at no additional charge (be sure this is written in your contract).  The cost of the modification portion of the vehicle is tax deductible if the total of your deductions meets the minimum amount requirement.

3. Seating. This information pertains to a modified vehicle with a side entry ramp and wheelchair user as front seat passenger.  If you are choosing a different setup, make note of similar things that will impact your use of the vehicle.

Modifying a van involves lowering the floor (for our van, about 8 inches).  That, and hydraulics which actually tilt the van in the direction of the ramp, allow the ramp to reach from the floor of the van to the pavement.

While the floor is lowered, the seats are not.  That means there is more room between the floor and the seats.

For the front seat driver, this means stepping up (think tall truck running board) before entering the vehicle.  Be sure the intended driver has the strength to hoist him/herself up to the seat.  The front seats are each on a platform so the person seated fits normally as s/he would in any car.  Both front seats are removable to provide the option for the wheelchair user to be the driver or the passenger.  The unused seat will need a place to be stored.  The middle row of seats are permanently removed to permit room for the wheelchair user to enter and turn into the front passenger space, and then to back out and exit forward on the ramp.  The rear seat stays in place, but is higher from the floor.  Two able bodied adults can fit on the rear seat.  Having the floor lowered 8 inches may leave some passengers’ feet dangling.  More recent vehicles may provide a pull-out bar for feet to rest on.  We have found it works best for back seat passengers to enter the vehicle (on either the ramp side or other, higher side) after the wheelchair user has maneuvered into place, and to exit before the wheelchair user (preventing wheels and feet from competing for the same space).

Modifying the van changes its capacity from 7 able bodied people to 3 able bodied people and 1 wheelchair user.  It also means an elderly or disabled passenger may find it difficult to enter and exit the van because of the van height on one side or negotiating the ramp on the other side.

The modification for our make/model (Honda Odyssey) van resulted in there being no space to store the spare tire.  When we purchased the vehicle, the spare tire was in a box in the space behind the rear seat.  If traveling with luggage, there may not be room for the tire.  As an option to carrying it in the car, we were given a small kit to fix a flat tire; but that may not be sufficient to repair a tire puncture.  Know ahead of time if this will be the case and consider how it may impact you.

4. Adjustment period. Other forms of getting around will never be as easy as a fully working body, so expect inconveniences and frustration.  Realize that time and patience are required to adapt by using, learning and practicing.   The wheelchair user must learn to enter and maneuver the chair properly into place and then exit by maneuvering backwards and then forward on the ramp out of the van.  The driver must research, understand and learn how to operate the extra features of the accessible van.

With added mechanics and technology comes added room for error.  Pushing the wrong button or pushing the right button at the wrong time can mean the ramp comes out of the van where there isn’t room for it.  There is stress and possible damage involved in a runaway ramp!  Be careful.

Even though we test drove vans more than once, it was a surprise after our purchase that there was no front console for storage/cup holders other than on the door.  We had to improvise.

5. Securing Wheelchair. There are two ways to secure a wheelchair to the floor.  One way is to use tie down straps that hook onto the four corners of the wheelchair.

 

Another way is to use a locking device.  Both are an added cost.  The locking device is faster and doesn’t require someone to attach the straps.   The locking device is mounted on the floor of the van and a pin is welded onto the bottom of the power chair.  The pin on the wheelchair, when aligned correctly, slides into the device and locks the wheelchair to the floor.  A button on the dash releases the lock when it is time for the wheelchair user to exit. The locking devices are not universal, so you will need one that works with your specific wheelchair.  If your wheelchair changes, a new locking device (and its cost) may be required.  

 

These “extras” can and may be included in the purchase price, but be aware if you will be given new items or used items.

The place where we bought our van works side-by-side and together with the place that works on them; but they are separate companies.  Be aware of this as it may affect servicing and payment.

Depending on the size and style of the wheelchair being used, securing the seatbelt may be  complicated.  I found it needs to be synchronized with opening the door and it took practice.

6. Parking requirements.   You will need to have ample room to deploy the ramp.  Not all handicapped parking spaces have the extra striped area next to it, and that striped area has to be on the ramp side of the vehicle. Be prepared that your parking place options will be more limited.   

7. Maintenance/Service.   In addition to regular vehicle maintenance, ramp service/cleaning is recommended every six months (to remove dirt, pebbles, etc.).  We were given the first cleaning free, but after that there is a fee.  Again, the service company operates separately from the vehicle dealer.  Ensure you have a name and phone number for service and emergencies before you finalize your purchase.

8. Other Wheels.   I originally hoped I could use a scooter in the passenger seat.  A scooter’s tiller (steering bar) is in front of the passenger.  The possible impact of  a tiller in an accident and subsequent airbag release could cause serious injuries, so scooters cannot be endorsed for use in modified vans.  Because the scooter I have is small, we do take it with us for use in some places.  I envisioned being able to transfer from one to another inside the van, but there isn’t enough room to do so.  It’s easier to move both outside of the van and transfer there.

9.  Test Drive.  Ask about and take advantage of any opportunities to test drive.  Some places will allow you to use the vehicle overnight or longer.  If not, ask about renting a vehicle to see if it meets your needs.

10.  Purchase.  Installing the locking device in a van and the welding the correlating pin on a wheelchair can take hours to complete.  Try to plan the preparation so you aren’t waiting at the dealership for an extended amount of time while the work is done.  You will want to be alert when you sign papers.  Again, be sure you have clear information about routine and emergency servicing and who to call for it.

Buying a van that is modified for accessibility is a major decision that comes with its share of questions and caution, along with a big price tag.  As with everything, being prepared helps avoid problems.  We spent more than a year researching and considering the purchase and had been following website inventories regularly to see what was available, yet there were still surprises after the purchase.  Having the van has allowed us to take short trips across town and longer trips out of town, all in safety and comfort. We were ready to take the plunge, and do not regret the purchase.  What these vans do and provide is nothing short of amazing.

Please comment to share your experience.

 

The Great Outdoors

No, I did not climb a mountain, traverse a nature trail, raft the rapids, or fly fish in frigid waters.  I simply left the house.

Leaving the house is a pretty big deal for me.  The length of time between outings had grown longer and longer; it had, at times. stretched to more than a month.

My ability to get out and about independently is long gone, so my appreciation for the times I do get out is that much stronger.  A simple trip to the store can seem like an exciting adventure.  It can sometimes feel like its more work than its worth because there is so much involved in getting me out the door; but it feels good to see that there is, in fact, still a world out there.

 

“You have to get an accessible van”, a good friend said repeatedly (can I overcome the nagging guilt?, I wondered).   “You’re worth it”, a loved one said many times (am I?, my conscience questioned).   We took the plunge and spent the money for a modified minivan that is wheelchair accessible.  We learned all of the information required to use it, and set out for adventures that awaited us.

The van has now taken us on many outings.  It knows the route to our local Walmart well and has traveled the trek to bigger places beyond our city limits.

It’s still not easy.  Nothing about leaving the house will ever be easy again, but its much easier for me than it was to get in our other vehicle.  Trips anywhere are anything but spontaneous and going out of town requires a strategically planned schedule; but it can be done, and I am grateful to be part of the outside world when I can be.  While it’s easier for me, it has been and is more work for Mr. Legs as he has had to learn how the special features work and sometimes must fasten and unfasten my wheels.  I look at Mr. Legs in the driver’s seat and am thankful to have a personal chauffeur who loves me enough to overcome the cost and inconvenience of our new vehicle, thereby saying “you’re worth it” to me with our resources, and his time and effort.

 

McFail

We got in the van and looked at each other with half smiles.  Traveling, for us, can be complicated.  We were guardedly excited about making the four-hour trip to be in the big city for the next two days.

Before pulling out of the driveway, we took quick inventory of all of the needed items that had been carefully packed for the trip.

Clothes?     Check.

Toiletries?   Check.

Wrapped gift for the party?   Check.

Extra cash to purchase anything we may have forgotten?   Check.

Full tank of gas?   Mr. legs had remembered that too.

 

About half way there, we realized we hadn’t factored in sufficient time for a bathroom break (no quick task for a wheelchair user). We could still get there on time, barring any unforeseen delay.

As planned, we stopped at a McDonald’s for lunch.  While not on the top of the list of healthy options, most everything on the menu there is quick, portable, and travel friendly.

I put in my order, requesting a hamburger, a berry smoothie (counting as a fruit, of course), and a pack of three chocolate chip cookies.  Mr. Legs would be ordering his usual McDouble and an iced tea.  The McDouble, while no longer on the dollar menu, is still a bargain.  I waited in the car while he went in to get the food and mix his own iced tea to his preferred taste.

He returned to the car with his cup of iced tea and that familiar McDonald’s paper bag.  Experience has taught us to take inventory inside the bag to ensure we were given our complete order.  Sure enough, they had forgotten the burger I wanted. So it was back inside for Mr. Legs and then out he came again, this time with everything he had ordered.  It was a good thing we checked the quantity in the bag. We congratulated ourselves on catching the mistake () before getting on the road and then took deep breaths as we continued on our way.

Hungry, I started eating right away.  I had almost finished my hamburger by the time we merged back onto the highway.  When the cruise control was put on resume, Mr. Legs was ready for his food.  I reached into the bag and pulled out the wrapped McDouble they had put on the bottom of the bag (the sandwich they had originally included in our order).  I arranged the wrapper for him, so he could easily eat the sandwich as he drove.  He took his first bite, then began telling me that they said McDonald’s cookies were no longer sold in packs of three, but were now sold individually.  He chose to buy three anyway.  We discussed this serious change to the menu and how it might affect our future visits to the golden arches.

 

As he took a second bite of his hamburger, I noticed his face change to show a look of both curiosity and disappointment.  Oh no, I thought, they must have put pickles (he does not care for pickles) on that burger.  While also paying attention to the road, he placed the burger on his lap and lifted the top bun off.  He looked with disbelief.  There, inside the bun, you could clearly see two pieces of cheese, a hint of ketchup, and mustard.  That was it.  Just two slices of cheese, a little ketchup and mustard.  Something was definitely wrong…..something was missing.  He kept glancing down at it and, after processing what he was seeing, said “I didn’t even get ONE.  Not even a single meat patty in my McDOUBLE!  Then, after a slight pause, he looked sadly at his empty bun and said “I got a McZERO!!”

This particular McDouble was not a bargain, and was certainly part of an UNhappy meal.  Who knew that we should have checked INside each wrapper earlier?  We had checked for quantity, but not for quality.  We didn’t have time to go back, or stop at another place.  Having only a bite or two left of my own burger, offering him half of mine was not an option.   While he was grateful there were no pickles, he commented that cheese and mustard, without meat to bring them together, were not a great combination.  He begrudgingly finished eating his cheese and mustard sandwich, but not before I took a picture.

 

When he had finished his McZERO, his puppy dog eyes looked over my way and timidly asked if he might please have a cookie.

I gave him two.  (We were glad he had gotten three.)

He ate them, and looked forward to supper.

 

The Waiting Room

It was yet another required doctor appointment.  Mr. Legs took more time off from work to take me.  We arrived early, as requested, checked in, and started filling out the necessary paperwork.

Sitting there in the waiting room, I tried to hold the office clipboard, a pen, my paper folder containing relevant documents for that doctor and my medication list, a small purse holding my identification card and insurance card,  the eyeglasses I’d just taken off (that work for further distance) to replace them with the ones that work for close distance, all while balancing my bum on my small scooter and trying to keep my left leg from flopping so far over that I risk it pulling my foot off the scooter floor.  I was anxious to get the forms completed before being called back for my appointment.

It was in the middle of my concentration on those things that an older gentleman sitting across from us chose to interrupt and say “I’d like to give you my card”.  After a short pause, I’m quite sure I met his eyes with an irritated scowl and replied   “what are you selling?

They are all over, people who are sure they know how to improve your life or get you on your legs again with what they are selling.  They disguise their marketing pitches or their feeling of superiority with concern.  Whether its a particular vitamin, a miracle diet, an essential oil, a prepaid funeral or a religious belief, they are certain they will be the messenger that makes a difference in your life.  I do truly appreciate good intentions, but after so many years on wheels, there’s a tendency to become skeptical and cynical.

The man who said he wanted to give me his card reached into his pocket and pulled out a small thick piece of paper and presented it to me.  There, in the center of that business card sized piece of paper were only two words in bold print.  “My Card!“.

I cracked a small smile, but a smile nonetheless.  The man laughed loudly, obviously pleased with himself that he had lightened my mood.  As he laughed, his whole body moved with delight.  “Clever”, I said to him, and he answered with a look of complete satisfaction.

All he had wanted to share was a smile – a bit of happy on a piece of paper there in that doctor’s office where almost nobody is there for a pleasant reason.  I finished filling out the forms and turned them in at the front desk.  Soon my name was called and I passed through the clinic door, returning to a more serious mood as I met with the nurse and then the physician’s assistant.  But I took my “My Card” card and a less tense facial expression with me.

I keep that card near my computer.  I grin whenever I look at it and I can still see that man’s face and his hear his laughter.  I wonder how many other people he has shared his non-business card with and how many smiles he has both collected and given because of them.  Very clever, and also very kind.

Lesson learned.  Not everyone wants to sell something.  Some people just want to share a free smile.

 

 

Bumps in the Road

Normal bodies are powered/fueled by food, water and sleep.  The output of human strength can reflect the amount and quality of input it is given. Needed strength  varies from day to day, and balance is found when input equals output.

When a body doesn’t work normally and movement on its own is limited, the owner turns to wheels.  Some can use wheeled walkers and/or manual wheelchairs, still powered by a user and his/her food, water and sleep.  Some need electric scooters or wheelchairs which don’t require a lot of power by the user; the power for those comes from electricity through a battery.  Electricity replaces human strength.  Seems simple enough, right?

The premise is simple, but the execution can be complicated.  Batteries can only put out the energy that is put into them.  Just as human strength is limited and must be recharged by regular food, water and sleep, so must a battery be checked and recharged with electricity routinely or it won’t function properly.  A person using an electric wheelchair must fuel his/her body and the wheelchair; but unlike internal signals like hunger, thirst and fatigue; a battery’s strength level is evident only by an external indicator, usually a dial or series of bars on the vehicle.  A user must constantly monitor the battery power level to know when recharging is necessary.

Just as physical energy can sometimes be depleted without actively noticing warning signs, the level of battery strength can be overlooked and low or no power can come as a surprise.  With many other things to remember, sometimes checking battery strength is  forgotten, and movement can stop abruptly.   There have been times when I have managed to maneuver my chair near the charger just as the last red warning bar fades and  disappears, and I breathe a sigh of relief that I reached my destination.  There have also been times when my battery has completely died in the middle of a hallway.   Electric wheelchairs have a release button which allows manual movement, but they are heavy machines and moving and steering them manually can be challenging.  The times when my chair battery power is completely drained are pauses in my path, bumps in the road.

When a power source ends, waiting begins.  Hopefully, when it happens, the user isn’t on the way to the bathroom or caught with nothing to do; and hopefully, someone is available nearby to help.  If not, the user is trapped and a longer waiting time is required until someone can help.

One day, when I suddenly realized my chair battery was almost dead, I managed to get its heavy charger and roll into place near an open electric outlet just before the power was depleted.  I plugged one end of the charger into the chair, then the other end into the wall outlet.  I took a deep breath and started the wait for the battery to recharge.  At the time, my frustration was high and my spirit was low.  I lamented to myself that I would be there for some time with not much more than my thoughts and a partial view out a lace-covered window.

I looked around me and realized my wheelchair was sitting where our piano once was.   It had been sold after the kids were grown and left home, and MS had taken too much of my hands to play.  What had once been an instrument had sadly become just a decoration.  I had put most of the music in a box and stored it, but I kept an old hymnal out and placed it on a table.  There it sat, not too far from me.   And…..if…..I….could….reach my arm out just…..past…..my….. comfort zone….YES!  I got it!

Damaged by MS, my voice isn’t much to listen to; but, thankfully, God hears the heart.  I searched that old book for familiar titles and started humming a melody.  Words followed and peace began to replace frustration, until I was genuinely enjoying the break in my day.

Time flew by.  Soon Mr. Legs was home from work and my chair’s battery was charged enough until a full nighttime charge could take place.

What had seemed like a bump in the road of my day, ended up  being a rest area.

 

 

Hotel Accessibility Review – Hampton Inn

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We stayed at the Hampton Inn St. Louis/St. Charles, Missouri for two nights.  We had reserved a block of rooms for an event.  The sales manager who coordinated our block of rooms was delightful to work with and very helpful during the many months we planned.  The rest of the staff was pleasant during our stay and one particular desk employee was quite fun, even volunteering more than once to take pictures of our group during the times when we were gathered together there.

The breakfast room, although it seemed a bit small for the hotel size, was a great place for family to congregate and visit.  Some in our group really enjoyed the pastries at breakfast and many appreciated the complementary coffee and fruited water in the lobby area.

Upon entering our room, I was happy to see that a major design flaw in most accessible hotel rooms had been remedied there.  In many hotels, the wide bathroom door, when open, blocks the path to the main door.  For those on wheels, a number of forward and backward movements are required to gain passage one way or the other.  The design of this room was quite different as a pocket door was used for the bathroom, thereby eliminating the need for a door to swing out.  The pocket door included engraved glass with a nice message.

 

Difficult to read on this picture, but it says “It’s a happy day in a happy place.”

If the door’s handle had been placed differently, just two inches to the side, it would give that much more clearance for the width of a wheelchair.   Still, the opening was sufficient and it is a great idea to use a pocket door!  Collisions with the swinging door were not missed!

The sink area had a bar/handle placed in front to help pull up to it, but I found it to be more of a hindrance than a help as it prevented me from getting closer to the sink.

There were good grab bars around the toilet.  The toilet paper holder was different, and may have been appreciated; but it was loose and the roll of paper fell off and rolled away a number of times, leaving someone like me with limited options.

  

Often, hotel accessible bathrooms install a seat in the shower far away from the shower controls and nozzle, rendering it useless; but the placement in this one was done well, making it very functional.

 

We enjoyed our stay there.  We rate it as one of the best hotel accessible bathrooms we’ve seen.  The winning feature was definitely the pocket door.