Driven

In the spring of 2011, I pulled out of the driveway and drove about a mile to our city’s tennis courts where my son was playing on the high school team. When I turned into a parking spot in front of the courts, I knew that when I drove home it would be my last time in the driver’s seat.  About an hour and a half later, I pulled back into the driveway, climbed out of the car, and said goodbye to my car keys.

It was a safety issue, not just for me, but for anyone else who would be on the road at the same time.  I just couldn’t trust my feet on the pedals anymore.

I left part of my freedom and independence on the counter with my keys that day.  I loved to drive, and giving up my keys was a big loss for me; and it was a loss for others too.  I could no longer make a simple short trip to the store on my own or share driving on long trips.  Losing my ability to drive meant that I lost a key component of relationships, as I could no longer go to those I care about.

I traded my keys for a lot of time alone in my home when I would rather be in the driver’s seat going places.  As nice as my home is, there’s a monotony in always meeting with friends here. I’ve grown accustomed to missing family gatherings. I have found myself looking longingly out the window and wondering vicariously if the people driving cars are on their way down the street, down the highway, or down south for vacation.

When it came time for a newer car, I shared in researching, negotiating the price and feeling the excitement in leaving the dealership in our car; and then feeling the stark reality that I would never drive that car. Decades earlier, I instituted a family rule that whoever was driving could choose the music in the car. Seven years ago, I swallowed hard when I felt the consequences of a rule that was still in place, a rule that had always seemed fair, until then.

After years of not driving myself, I have noticed less interest in recognizing landmarks and knowing directions, a decreased sense of direction and sense of adventure. There are things I don’t miss – I never have to worry about getting a speeding ticket, causing an accident or even changing the oil.

It was the right decision to give up my keys when I did. I knew that time would come, and I knew I would know when it did.  I was aware at that time that I would miss being in the driver’s seat.  Seven years later, I still sometimes find myself reminiscing during the day about driving, and at night having dreams that I’m driving.  I had to give up my keys, but I’m grateful for all of the years I did drive, the countless places I was able to go, and the memories I have from those times.  And I am now grateful f0r our accessible van, and for the willingness of Mr. Legs to be my driver. (Click here to read my post about getting out and my chauffeur.)

You may be bothered about brushing the snow off your car, feel frustrated with other drivers, or feel irritated about the time and cost of auto maintenance; but I hope you will also appreciate the ability to drive.  Feel the independence of being in the driver’s seat, the power of navigating on the open road, and simply enjoy it.

 

As a child, I was driven places.  At 15, I was driven by the desire to drive myself.  My dad and a driver’s education class taught me to drive defensively.  At 16, I was given a license to drive.  At 19, I owned a car.  At 23, I got married, moved to a different country and learned to drive aggressively.  At 27, I was driven to drive cautiously as I carried the responsibility of a little life inside my car. Some years later, I felt the gravity of having three young lives I was responsible for in the car with me.  At 34, I moved to a country where road rules and lane lines were seen by drivers as mere suggestions.  At all these ages and stages in between, I embraced and enjoyed the ability to drive.   At 52, as a result of MS, I was driven to stop driving. 

 

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The Enemy Called Guilt

Helping or hurting?  While raising my kids, I asked them that question as a way of getting them to think about how their words and/or actions affected the people or the situation around them.  Repeating that question over time enhanced my own sensitivity to the possible impact on others from what I myself say and do.

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As most of us are, I’m well aware that what I do affects others. But now, what I don’t do has a greater impact than what I do.

MS is a thief of abilities.  The impact of MS and its symptoms causes lack of sleep, lack of time, lack of energy – not just for those with MS, but for those who care for them.  Because my MS is progressive, the list of what I cannot do grows longer with time; and the impact on others grows as well.

Once in a position to help others, I now require help from others.  MS has forced me from giving to taking, and that infringes on others’ time and freedom. Empathy, once a helpful character trait, now works against me. The sensitivity I feel toward others is especially strong when I consider how my inability affects the able people around me.

I did not choose to have MS.  I did nothing to cause it, and there is not anything I can do to change it.  I have no control over it.  I could not stop it from happening, and I cannot stop it from progressing,  Nevertheless, it is my MS, and I feel responsible for it.  What results is guilt. 

Guilt affects what I do and don’t do every day.  When I see that something should be done but cannot do it, I must decide how necessary it is that it be done; then make a decision if it is important enough to infringe on someone ws2else’s time.  There is a  frequent weighing of whether an act is more of a burden for someone else to do, or more of a burden for me to do without. My brain weighs need vs. want, convenience against imposition, personal preference vs. mutual benefit.

At this point in my life, the weight scale has tipped drastically on the taking side, and the answer to “helping or hurting?” leads to a growing cloud of guilt.

Not wanting to impose on others’ time or convenience, I hesitate to ask for help…waiting for a better time, which may or may not come.  There are times I choose not to ask at all – guilt keeps me from requesting things I want, and sometimes prevents me from asking for what I need.  Even when I am encouraged to ask, guilt makes it very difficult to do so.

 

Guilt comes in increasingly higher waves which erode more of my self worth each time one washes over me.  As guilt becomes bigger, I become smaller. Keeping it from overtaking me is a struggle.

 

I know that others in my position struggle with the same thing, but that doesn’t make it easier.  Those afflicted with illness are not alone in their feelings of guilt. Loved ones and caregivers may feel guilt too and a helplessness that they cannot fix us or make our pain go away; or they may feel guilt that they have able bodies while we experience limitations.

“Guilt is the rumbling strip in our lives.” -Unknown

Guilt is a positive thing when it keeps us from harm or trouble, or from causing harm to or trouble for others. Facing guilt requires humility and can overcome pride or selfishness. When it is not the result of intentional bad choices, but uncontrollable circumstances, guilt can be a heavy burden.  It is an enemy I battle against.

Like anything negative, guilt can be replaced with something positive.  I am trying to focus instead on growing my appreciation for those who help me. I am thankful for the people who do for me what I can no longer physically do for myself.   I am also grateful for the givers in my life who listen to me, try to understand my condition and emotions, encourage me, and pray for me.  I can, and do, appreciate all of them.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Read about other enemies in this blog’s category “Enemies”.

 

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The Dangers of Decorating

 

We bought a happy-looking spring wreath for our front door this year.

 

 

 

 

 

 

 

I thought it complemented the daffodils that greet us in the spring.

 

 

 

 

 

 

 

The door is set back because of the front porch and stairs in front of it, so we certainly weren’t expecting the artificial wreath to attract living things…but attract them it did.

 

 

 

 

 

 

 

I wasn’t the only one who thought the forsythia branches looked real.  Someone or something was targeting them. 

The branches on the wreath had been pulled on and out in numerous places, leaving it with a wild bed-head kind of look.  Mr. Legs found pieces of the wreath on the porch showing a path leading to the large evergreen bushes nearby.  Soon after that was noticed, I started hearing chirping sounds coming through the door.  I certainly didn’t want to continue misleading the birds, nor did I want the wreath further damaged.  I would open the door a slight bit, then close it loudly, sending a message to the birds that our door was not a good place to find supplies for their nests.  Eventually, the chirping stopped and we were glad the birds had made other arrangements. 

We had many compliments on the wreath, so we left it up all summer.  Temperatures are lowering now, as we are moving into fall.  The wreath was taken off the door to be stored for next spring, and what was discovered behind it was a big surprise.  Apparently, one bird, when it couldn’t take pieces of the wreath off of it, decided to build its nest right there in the wreath.  It wasn’t a great decision and, at some point, the nest was abandoned, leaving an egg behind.  That’s how we found it, right there in the wreath. 

 

 

 

 

 

The bird isn’t the only one who learned a lesson.  I guess it wasn’t a great decision to put a real looking artificial wreath on a door where a bird might be confused and build a nest,….and lose a baby.

Oh, and mud wasps also made their home in the wreath and on the door.  That settles it, no more spring wreaths! 

But it’s fall and time for a new look. 

 

 

 

 

 

 

 

I suppose I should watch for squirrels.

 

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Special Delivery

We have probably all experienced both good haircuts and bad haircuts. We have all likely felt the comfort of having a talented stylist we can depend on, and also the anxiety of searching for a new one when necessary.

A few years ago, when I needed to find a new place to have my hair cut, I reached out to local friends on Facebook asking for recommendations.  Getting around was more challenging than it had been before because my mobility was more restricted, and the recommended places I tried were difficult or impossible to enter on wheels. 

After sharing my frustration, a friend said that her trusted stylist would actually be willing to come to my house.  Feeling hopeful, I called her, and she agreed to come to my home to cut my hair. I had never heard of a stylist that offers delivery. 

The day and time came and Lisa arrived. She brought with her what seemed like half of her salon, but acted as if it was no trouble at all.  She was upbeat and pleasant and never once made me feel that she had gone out of her way.  She listened to what I wanted and did exactly that.  She colored, cut and dried my hair.  I was really pleased with her work.  She delivered talent, experience, and artistry.

 That was three years ago. Since then, she has come to my home to color and/or cut, wash and dry and style my hair many times. Whenever I ask if she is willing to come again, the answer is always yes.

 

Scissors, shampoo, conditioner, towels, dryer, a wide assortment of tools and bottles of anything and everything she might need or want are among the items she carries with her to use while she’s here.  She delivers equipment and products.

She never batted an eye about accommodating me as I sat in my scooter and now my wheelchair (lower than a salon chair would be and not adjustable like one).  She adapts and delivers flexibility.

Always cheery and pleasant, she also brings with her a bright smile, lively conversation, understanding and encouragement.  She has purchased things just to use at my house to accommodate my limitations.  If I like a product, she will get it  and bring it to me.  She delivers sunshine and kindness.

I have recently needed my hair washed, so I asked if she would be willing to come and just do that for me.  Not surprising, her answer was yes.  In she came with stories to pass the time while she gave me the best head massage and hair washing of my life.  Without me even asking, she offered to come wash my hair regularly.  She delivers thoughtfulness and generosity.

In a fast-paced world where people are running to meet their own responsibilities and fulfill their own desires, there are a special few who are willing to go out of their way to help someone in a position like mine. There are people in the world so giving that they spread love and hope wherever they go.  Some, like Lisa, are so good hearted and generous that they even personally deliver it!   

 

  

  

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The Enemy Called Fear

 

Fear – friend or foe?

We have a natural inborn fear that keeps us from dangerous activity.  It is given in different degrees, which explains daredevil behavior in some people, and other people being plagued with anxiety.  Those who want a healthy amount of fear must find a balance between dangerous and debilitating.

I remember what it was like to trust my body.  With that trust came confidence.  I knew who I was and where I was in space; I knew what I was capable of doing, and I exercised that knowledge to achieve  tasks.  But MS has changed my abilities.  I can no longer trust my body, and confidence has been replaced with an uncertainty…frequent hesitation…an underlying yet ever present fear.

It’s a healthy fear, a fear that prevents risk taking and subsequent accidents.  With MS, I have logical and legitimate reasons for being fearful.  Every day, I must question if my legs are strong enough to support me or if my writing hand will craft a legible signature, if my body will behave enough to keep from sliding out of my wheelchair, or if I will have the clarity to complete the day’s mind tasks.  I need enough fear to be careful due to lost abilities, but not so much fear that it limits the abilities I still have.  

Sometimes fear itself can become more debilitating than what we fear.  Fear not controlled can stifle living , and fear as a way of life can be exhaustingFranklin D Roosevelt said the “Only thing we have to fear is fear itself”.  It’s a difficult task to tame fear.  I try to manage fear instead of allowing fear to manage me.  When fear piles up, it becomes anxiety.  It is at those times that it is most important to break down and quiet fear.

There are things that help me battle fear when it seems stronger than I am.  Mindfulness has sometimes been helpful for me. Biofeedback has proven to be a useful tool in altering my outlook.  What helps me most though, are people who are good listeners. Open ears and understanding hearts can lighten the heaviest loads.  And prayer to the best listener of all can remove fear and sooth my soul.

Fear, as a protector from harm, is my friend.  Fear, as a controlling force, is my enemy.  In front of me, fear blocks enjoyment from life and fear behind me seems to chase me; but fear beside me as a helpful reminder can keep me from unnecessary trouble.  I am using whatever strength I have to keep fear by my side as a friend.

 

 

 

   

 

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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.

 

 

 

 

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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.

 

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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.

 

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