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.     

 

Funnel Shaped Foliage

I watched their progress out the front window of our home.  Seeing them sprout each year seems the same, yet new, every time.

They grow rather tall.  Last year we were sure we had a look alike weed trying to take them over, but this year we think the sprouts might do a practice run/season before producing blooms.  We don’t know much about them – their proper name, best growing conditions, etc.,  and I think if we researched it, it could take the fun out of experiencing them as they happen.

There seem to be many different kinds.  Most people are familiar with Easter lilies.   I know that peace lily plants are popular at funerals.  Where I grew up, there were an abundance of striking orange and black tiger lilies.  Around here, bright yellow daylilies flourish.  The lilies in our yard are a pretty pink, and even different shades of such.  We didn’t plant the bulbs (we have the previous owners to thank for that).  A few  years ago, we hired out a landscaping project that could have affected their survival, and we often forget to water them.  Yet they grow.  We just assume they will show up each year, and they do.  This year, they have grown even better than before.

My MS and current physical state bring with them valid concerns.  Meeting basic needs is beyond my ability, so I need help to survive.  “What if” worries pile up sometimes.  I look at the lilies and remember reading about them in the Bible.

  

The book of 1 Kings talks about the tops of pillars being in the shape of lilies (1 Kings 7:19 and 22), Psalms includes songs with the word “lilies” in them, and the book of Song of Solomon mentions gardens of lilies and gathering them.  Luke 12:27-32 says “Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these.  Do not be afraid, little flock, for your Father has been pleased to give you the kingdom.”  The Bible is full of wisdom; some of it easy to understand and some parts can be challenging.  There’s no doubt that it clearly tells me not to worry, and I struggle with that at times.

The lilies in our yard and all around the world come and go in their season; but they are more than foliage.  These pictures and the words of God are a year-long reminder to me of God’s peace and provision.  I hope they are the same for you.

 

Wheely?

I almost went after her.

I was sitting on my scooter at the end of the checkout line of a store, minding my own business, when she came up behind me and bent over in front of me, pausing briefly to place her face rather close to mine.  She had clenched fists stretched out in front of her, moving them up and down, as if revving a motorcycle.  The words she spoke were clear to anyone within ear shot – “VROOM, VROOM!!  …..right?”

 

………

 

And then she was on her way, chuckling to herself in a congratulatory way.

She was not someone I knew or someone who knew me, but rather a complete stranger.

I sat there for while, confused, wondering why she had felt the need to say anything at all, but especially that.   What would prompt someone to approach a stranger and comment in such a way?  Perhaps I was providing her with her day’s entertainment.  I shook my head and asked myself what kind of response she might have expected.  Laughter?  Return sound effects signaling agreement?

I’m usually a good sport, responding to unwanted comments with a smile, a dose of grace and a heart of forgiveness.  But caught on a bad day, with not enough sleep and a higher than usual pain level, something in me snapped.   I seriously thought about chasing her down and catching the back of her feet with my wheels while responding with “Yep!  Vroom, vroom.  Take THAT!!”  Not wishing to make a scene (or be arrested), it was satisfying enough to imagine it.

When your legs don’t work, they are replaced with wheels.  Anyone who needs wheels is likely glad to have them.  I am.  I hate that I need them, but am grateful for them.  They get me around.  Because I need them and must use them to move, always, they have become like a part of me.  You have feet, I have wheels.

Friends and strangers feel free to comment on my scooter, suggesting it needs racing stripes or flames or flashy hubcaps, as if they have struck upon an ingenious idea and are the first to share it.  I’ve heard it before.   There are unspoken social boundaries.   I know not to comment on your body shape, size or oddities.  What causes people to think my leg substitutes are fair game?   Wheely???    (really?)

It’s not necessary to go out of your way to be insensitive.  Sometimes people don’t know what to say.  I get that.  But it’s much better to remain silent than to offend.   If we are face to face, I appreciate being acknowledged.   A simple hello will do.   If you feel you must voice an idea; proceed with caution.  I’ll likely just grimace.  But if I’m having a bad day, you might want to watch your heels!

 ………

 

 

House

This is a story about raising a child as if you were building a house.

 

Buying the lot was a commitment.  Once we owned it, we dreamed about what we would build.   

  

 

For many years, we constructed a house. We used the best selling book as a guide.  We laid a firm foundation, then piece by piece we placed the beams to support each area and room. It was fun to build the building and watch it take form. With each phase of construction, we invested more time and money, effort and emotion as we grew more and more involved in what the end product would be like. We sacrificed other things as we concentrated on the house.  It was hard work and exhausting at times.

The floor plan was well designed and flowed. We used only the best materials we could afford as we watched it take shape. Each door and each window was carefully placed.  Each angle was thought through.

During construction, we ensured the property was safe from those who might steal from or damage it.  We made some mistakes along the way but we fixed them as we recognized them.

 

 

When it was completed,  we landscaped it and even furnished part of it.

And then it was time to sell it.

Fair or not, the house itself chose who would live in it.  It was hard to see it go, to sit back and watch someone else paint over the colors you carefully selected.

 

You see it change and hear as the house proudly touts its features as if it had built itself.

 

With any luck, you will still be able to visit it, but you have no say in how it is treated, how it is decorated or even how it might be remodeled.   And sometimes it happens that you’re not allowed to comment on it.  It may need repairs as the world weathers it, but you must refrain from pointing out what the new owner may miss.  If the roof leaks, you hope it is patched. If the foundation falters, you pray someone will level it straight again.  But you can no longer inspect it, make repairs or suggest how to fix it. 

You still love the house and the fond memories of building it.  You hope it will stand the test of time, remain firm on its foundation, realize its value and maintain its character.  Love, faith, and hope – those have to be enough, when a child becomes an adult.       

   

The Sentence

When I hear about someone being diagnosed with multiple sclerosis (MS), I feel sad – sad as I do for anyone who has received any diagnosis; but also sad because I personally remember and understand the impact of hearing the words “you” and “MS” in the same sentence.  I know well the uncertainty that invades your life when you are given a diagnosis that abruptly moves your status from healthy to unhealthy.  When you hear the words “you” and the name of a disease in the same sentence, unpredictability appears and hovers over your future like a dark cloud.  It’s scary. 

I had my first symptom of MS in 1986 when I was 26 years old.  When I heard the words “you” and “MS” in the same sentence, it sounded like a death sentence. That was 31 years ago. THIRTY-ONE years is a long time ago.  Thirty-one years ago, there was nothing that could be done.  I was told to go home and come back if I had other symptoms. 

RESEARCH

Things have changed and medicine has advanced dramatically over the past 31 years. There are now disease modifying drugs (DMDs) that can slow the progression of MS.  There are many to choose from; so if one isn’t effective, it can be changed until the best one is found for each individual.  There are also new and improved medicines to deal with symptoms. There is research being done, and there is a cure coming – I believe that with certainty.  I have every confidence that someone today who is having a first scary symptom and hearing the words “you” and “MS” in the same sentence, will not follow the same course I have.  So when you see me now in a wheelchair, don’t assume this is what MS will look like for you or anyone else being diagnosed today.     

I know the power of fear.  But after the fear subsided, I lived an incredibly full life.  I had and raised three children.  I traveled.  I have experienced wonderful highs, and I’ve laughed and I’ve loved more than I could have ever dreamed I would have after hearing those words together in a sentence.

Yes, I know the power of fear; but I also know the power of God. He knows our fears. He listens to our prayers. He does not always answer yes when we ask Him to take bad things out of our lives, but He walks through life with us as we experience and learn from them. 

To you, who heard the words “you” and “MS” in the same sentence…to you, who has been given any diagnosis that feels like you’ve just smashed into a wall – there is hope.  Be assured, the sun is still there behind the cloud, and you will see it again.  And I have found it’s true that even dark clouds have silver linings. 

Life is like a road. It’s not always a smooth ride. There are speed bumps and potholes and detours along the way.  MS is a detour in life, it is not a stop sign.  The detour is just a different route to travel than the one you planned.   

It’s going to be okay. Not perfect (as most of us picture the rest of our lives when we’re young), but okay.  There is still a road ahead of you. Like I couldn’t years ago, you cannot guess now what the rest of your road will look and feel like. Don’t waste time thinking the worst. There are good things to come.  There are smooth stretches and beautiful scenery down the road and there are loved ones to share the road with you.  Don’t let fear overtake you and steal good things from you.  

Any loss requires grieving.  You’ve lost your health status and you must allow yourself time to grieve. But don’t give grief more time than it deserves.   Grieve, but find hope.  Adjust your expectations and embrace hope.  You are not alone.  God loves you.  He wants to be on the road with you.   Let Him comfort you.  Let others who love you comfort you.  There are organizations to help inform and support you – use every resource you can find; but don’t live your diagnosis…live your life.

That sentence, when said to me, was not a death sentence; and it’s not for you either.  My detour showed me many beautiful things along the way that I would not have seen on the road I planned to travel.  Yours will too.  There have been cracks and potholes in my road, but also patching and resurfacing.  There have been mechanical breakdowns, but also road assistance and mechanics.  Don’t look at me in a wheelchair and be afraid of becoming like me.  See beyond my wheels.  Look at me and plan to have as wonderful of a life as I have.  Look at me and know you will have even more chances than I have had to have a full and beautiful life. 

Everyone has challenges in life.  This is yours. You can handle this.  You are stronger than you know; and if your strength runs out, let God and others refuel you.  

 

Stairway – Where Did They Go?

 In my last blog post “Stairway to Heaven?” (click here to see it), I wrote about images of the  path to heaven being a stairway – a unsettling vision for someone who cannot walk.  I’m not the first to think that way.  Below shows how someone put it in cartoon form.

In searching for Bible verses about heaven, I was reminded that Jacob had a dream in which a stairway to heaven was lined with angels who were ascending and descending on it (Genesis 28:12). Interestingly, the most recent images I found were staircases that were either empty or had people on them.  

 

I remembered a song/hymn we used to sing in church called “We are Climbing Jacob’s Ladder”.  I did an internet search for “Jacob’s Ladder” and discovered that images created by people years ago were much different, and matched the Scripture more closely.  Here are some examples.

 

 

 

So, what happened to the angels in the more recent pictures?  It’s interesting to think about why they aren’t included.  Does their absence indicate a lack of knowledge about scripture, or does it reflect a more recent culture of self-absorption?   Or both?

Whatever the reason for the difference, I have a definite preference for the older pictures that show the angels.  My preference is two-fold.  First, the angels comfort me.  The images of them assure me that God’s workers are present here in our world.  We sometimes forget that our world is a battlefield between God and satan, good and evil.  Acknowledging the presence of angels forces us to also acknowledge the one-third of once angels/now demons who followed satan away from God and out of heaven.  They and their influence are the reason for the bad in our world – disease, corruption… every evil thing.  They are why I have MS.  Angels represent to me God’s love and protection in the midst of this life’s trials and any good that may come from them.

The second reason I prefer the older pictures with the presence of angels ascending and descending between heaven and earth, is because it gives personal resolution to how I will manage those stairs to heaven.  One or more angels will escort and carry me home – home in heaven is where I will be free from evil, free from fear, free from pain, and free of MS.

Two preferences for the images of angels – one for now to help survive the chaos of this world, and one for entry to the next world.  Angels are sometimes forgotten, never overrated and always comforting.  I’ll take angels over an empty staircase any day.

Doing a different search reveals there are some more recent pictures of angels on the stairway, but there aren’t many.

I like this picture I found on my last search.

Another song comes to mind, with the lyrics  “All night, all day, angels watchin’ over me my Lord.  All night, all day.  Angels watchin’ over me.”   Now and here, then and there when it’s time, angels are present and with us when invited to be.

 

 

Mark 13:27   And he will send his angels and gather his elect from the four winds, from the ends of the earth to the ends of the heavens.

Luke 16:22    “The time came when the beggar died and the angels carried him to Abraham’s side. The rich man also died and was buried.  (NIV)

On page 228 of his book Angels, Billy Graham says “The Christian should never consider death a tragedy.  Rather, he should see it as the angels do:  They realize that joy should mark the journey from time to eternity.  The way to life is by the valley of death, but the road is marked with victory all the way.  Angels revel in the power of the resurrection of Jesus, which assures us of our resurrection and guarantees us a safe passage to heaven.” 

   

Stairway to Heaven?

It will happen to all of us.  You know what they say, “life is 100 percent fatal”, and “it’s a hard and cold fact that one out of every one person dies”, and “nobody gets out of here alive”.  Yes, death is definite….certain….inevitable.

Some think that death is the end.  Others think that what happens after death is up for debate.  I am certain that there is life after this life here and that there are two directions to go.  I have put my faith in Jesus Christ, humbly accepted His gift of salvation (forgiveness for and removal from payment/punishment for all the wrong I’ve done) and am assured of spending eternity with Him in Heaven.

I am confident about where I am going, but questions remain as to when and how my present body will die.  The biggest question I have is how my soul will transfer from this life to the next.  There are references to heaven being “above” (ironically, see below for references), and many have imagined traveling from one world to the next.  Some put those mind pictures on canvas.  Out of curiosity, I searched on the internet for images of heaven and discovered many.  I found three main categories:  the entrance gate/door, the path to that gate, and heaven itself.  Here are some pictures I found of the gate or door.

 

 

And here are some images of the path to that gate.

   

    

What do they all have in common?   STAIRS!

   

A lot of  STAIRS!

 

Lots and lots of stairs!

   

The amount of stairs and just the fact that they are stairs is a bit concerning for me since I cannot walk.  I’ve grown accustomed to accessibility obstacles and frustrations, but really?…STAIRS to heaven?  I wonder how on earth I will get there!?

It is believed that an angel escorts us into the next world.  I hope there’s a strong one to carry me.

I liked this picture that shows an escalator……

…..but it doesn’t appear to accommodate wheelchairs.

This is my favorite picture of being guided into my soul’s new home.

How I will get there, I don’t know; but I do know that God keeps His promises, so somehow I’m gettin’ up through the clouds and will finally be face to face with my Savior.  I like thinking what it will be like to arrive and behold Him, as this picture portrays.

I have always loved this picture of the warm meeting of the Creator and created.

Once I’m there, I sure hope it looks like these imagined pictures.

 

There is certainly uncertainty about the circumstances of the end here and the beginning there, and exactly what the journey will look and feel like; but I believe there will be more anticipation than anxiety, more joy than sadness, more relief than pain.

It’s all interesting to ponder what it will be like up yonder.  As with any trip and new experience, I have spent time being curious about it.  I like to think I’m prepared, but I’m sure there will be pleasant surprises.  I eagerly anticipate the journey.  For now I’m here and I will concentrate on living the life I’ve been given until it’s time to  move on.

Click here to see what’s missing in these pictures.

 

Genesis 28:12  He (Jacob) had a dream in which he saw a stairway resting on the earth, with its top reaching to heaven and the angels of God were ascending and descending on it.

2 Corinthians 5:1  For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands.

References to Heaven being above:

• Isaiah 40:22   He sits enthroned above the circle of the earth, and its people are like grasshoppers. He stretches out the heavens like a canopy, and spreads them out like a tent to live in..
• Job 35:5  Look up at the heavens and see; gaze at the clouds so high above you.
• Psalm 78:23   Yet he gave a command to the skies above and opened the doors of the heavens;

 

 

 

Moments in Time – Grandmothers

It was a dinosaur party.  It was fun to plan, fun to do and it is fun to remember.  Both grandmothers were invited and both drove three hours to attend.  Here they both are with the birthday boy.

Years later, when that birthday boy graduated from high school, both grandmothers attended; and of course there were pictures taken.  The dinosaur birthday picture had been recreated 14 years later without any of us realizing it.

A little cropping, and we have then and now pictures.

That birthday boy grew a bit in those 14 years, and went from cute to handsome.  His grandmothers added years too; but were still beautiful and giving, and they were there again to support him.

Moments in time and the images captured in them tell a story of support, and encouragement……..a story of love.

 

Dancing With My Star

You’ve seen or heard of the show, haven’t you?  Dancing with the Stars is a series where movie stars, professional sports players or those otherwise well known, are paired with professional dancers with whom they train for a televised competition. The audience, both live and at home, watch as the couples flow effortlessly fast or slow across the floor, each movement synchronized.  They wear impressive matching costumes and their bodies move as one, perfectly in sync with each other. The behind the scenes clips show that it didn’t start out that way though. They struggled and were forced to communicate, finding words when actions weren’t enough. I would guess each time they danced together it became more comfortable.  Like anything difficult, it took practice, patience and determination to achieve the final performance. Then they are judged.

I suppose it’s hard to imagine, when you see me in my wheelchair, that it wasn’t always this way.  It may be difficult to  picture if you know my husband’s body has been invaded by cancer and the treatments to fight it.   You wouldn’t guess that the first thing we did together was dance. 

There was a group of us who went out together all those years ago.  It had been a road trip between colleges. One group came to surprise my roommate, and celebrate her birthday with our group of friends. That night, new friendships were formed when we went out dancing.  Everyone danced with everyone on that small crazy flashing disco floor.  By the end of the night, he and I had danced together the most. 

We danced again in that group more times when there were more road trips one direction or the other.  He and I danced at ROTC military balls and at parties. We were just a couple of kids, but each time we danced together was more comfortable and more fun.  We learned to anticipate each others’ movements.  We knew how to fit in each others arms and it felt joyful and romantic. We would smile at each other and felt love when we danced together.   

In celebration, we danced our hearts out at our wedding and others danced in happiness with us and for us.  He danced with exuberance, style and a little bit of crazy.  I tried to keep up. 

 

         

 

As the years went on, we danced at military balls, weddings and parties.  During the time that he taught at a university, we took ballroom dancing classes there; and we learned to tango, waltz and fox trot.  And, sometimes, at the surprise of our children, we broke into freestyle dance at home.   

Then MS came, not all at once; but little by little, taking pieces of my legs at a time.  My heart still danced and I could move my arms about, but my legs wouldn’t dance on the floor so we couldn’t dance together anymore.  We did many other things together, but MS took dancing and its fun from us.  When we have gone to weddings or parties, I’ve encouraged him to dance without me.  Most of the time he does, and most of the time I am more than content to watch him move; sometimes I have to swallow the loss I feel.      

Years have gone by while we have watched MS cause my body to do less and less.  There came a time when less meant I could not do something for myself…and he helped me.  And as I have been able to do even less, he has helped me more.  There’s a lot of choreography and effort that goes into daily routines now.  He guides my legs and arms to help me accomplish tasks.  He helps steer and maneuver me to get comfortable.  Right leg here, left arm there – guiding my body as we coordinate together, each movement synchronized.  We usually anticipate each other’s movements.  Sometimes we are forced to communicate, finding words when actions aren’t enough.  It takes practice, patience and determination as we move together.  One day I realized that we are…..in a way…..dancing again. 

Sometimes the dances are new and awkward and they take awhile to learn and get comfortable with.  It’s not fun and it’s not romantic in the way it used to be, and it’s certainly not flashy with disco lights.  At times its smooth like a waltz,  it can be choppy like the Charleston, other times we tangle like a tango, and sometimes it feels like a sweet ballet when he puts on a necklace or learns to put my hair back.  This kind of dancing feels more like sorrow than joy, painfully humbling and beautifully sacrificial.  I wish we didn’t have to live like this; but I smile inside when  I see how he cares for me.  When we move together, it tells a love story through a new form of dance.

We’re a team and MS is our competition.  No audience, no judges, no fancy costumes; but he’s my Star and we’re dancing in a new way.