#9 - Potholes, Sinkholes, and Dead Ends

       

Welcome back!  I have been working on another post, but could not seem to finish it.  This kept wanting to come first, so here goes....I want to take you on a little journey, maybe a little "off road", if you will.  I warn you beforehand that this will not be a light and airy post.


In the almost 29 years I have been with my husband, Bill, we have had many on road and off road adventures. In cars, trucks, ATVs, motor homes, dirt bikes, Harleys, and even on foot (this does not count the years of "on water" experiences).  Some have been planned, some spontaneous, some even surprises.  We have ridden our ATVs up rocks in the desert, down vertical dunes on the Oregon coast.  Have ridden our Harley-Davidson in snow one year for the Olympia Toy Run, and in 100 degree heat all the way to Spokane. That man can get any vehicle (or boat) into any space, I kid you not.  He made me a better driver, and our kids, too.

I have been thinking about this a lot lately -- maybe because I miss driving (haven't driven a car since April).  But I have also been talking with a couple of close friends lately that are experiencing life "issues", and as we talk, I find I have been relating these issues to being potholes versus sinkholes.  Sometimes we talk about problems as "bumps in the road", but I think my metaphors may sometimes be more accurate.  It has become a theme for me mentally -- maybe because of this blog.

So, back to this journey -- my journey with ALS.  There is so little understood about this disease, even though they are finding out more all the time.  Every person seems to develop it differently, although many of our symptoms are similar.If you know me, you know that I have done my share of research, as have my husband and other family members.  It is hard to do, as the ending of all the "stories" is the same.  I am going to die.  (So are you, by the way -- I just know how).  So, I do less research, but follow different websites and individuals online and through social media.  Who knew I would be addicted to Facebook?  By the way, Facebook has allowed me to connect with other women in my position (and men), who help me feel less isolated.  One even has the same wheelchair -- in my favorite neon green!

While it is true that I am getting weaker each and every day, as a math and science teacher I find the process somewhat fascinating.  From the earliest stages (which is almost two years ago) I have experienced muscle twitching everywhere.  It started in my left arm, but is all over.  Some you can see, some I just feel.  If I rest my chin or jaw on my hand to rest my head, I can feel what is left of my jaw muscles twitching.  Sometimes it is in my hand, and I can see it.  In fact, almost my entire body is experiencing this nonstop -- they call the twitches fasciculations.  Last April I had an electromyogram (EMG) -- which measures the electrical activity of muscles at rest and during contraction. You could hear the amount of twitching that was happening.  Unreal. Since the muscles don't rest, they waste away.  Even my tongue was twitching.

With my neck and shoulder muscles weakening I am hunching forward.  I look and feel like a bobble head in the van, turning or bumps like driveways make my head bounce all over.My jaw muscles are weakening, so when I am not thinking about it (or when sleeping) my lower jaw falls open.  At night I have to wear a chin strap to keep it closed.  My lips are also weak, so drooling is becoming an issue, even though I am taking medication to reduce saliva production.  The other problem is not being able to rinse my mouth after brushing my teeth.  I use a little sponge on a stick with water to help.  I can no longer blow my nose.  I am hoping to stay healthy (is that a joke?) so I don't get a cold.  Heaven help us if I cry...it is a mess!


My left arm is mostly non-functional.I still have some shoulder movement, but nothing below that.  So I ca shrug, but cannot lift my arm, hand or fingers.  I have total sensory ability, but no movement.  I still look at my hand as if it should grab something, as it lays on the arm of my wheelchair.  It is even losing the knuckle wrinkles.  At least it looks younger!  My right arm and hand are weakening.  My shoulder is having a hard time with lifting or rotating.  My hand is losing fine motor movements.  I am hoping it lasts as long as possible, as I need it to type.  I am pretty proficient with one hand keyboarding!  Because it is so difficult lifting my right arm, I can no longer wash my own hair, comb it, or even lift small items unless my elbow is supported.  I can still hug, though!

Nighttime is interesting.  I have to sleep with my head elevated to avoid choking or aspirating saliva.  So I have an adjustable bed to help. My left arm wears a soft brace to keep my hand and wrist straight.  My feet are kept somewhat flexed by pillows at the end, which also keep the covers off of them.  I wear a breathing mask, a chin strap, and am hooked to a feeding pump to get additional calories all night.  And I do not move.  I no longer have the core strength to shift at all, and cannot roll over.  I sleep on an inflatable mattress pad that varies the air pressure every few minutes.  It is crazy.

I have talked before about losing my speech.  Now my lips won't even move to make the sounds at all...no more lip syncing!  I am so fortunate to have an iPad and iPhone.  I have found apps that allow me to type sentences, and the app converts it to speech.  Great in fairly quiet spaces.  Even in our van you cannot hear them.  And forget about a restaurant or party.  I haven't found a wireless speaker that helps yet -- we have tried a couple.  In a group conversation, by the time I can type a message, the group has changed topics and moved on.  I get to say about 10% of what I want.  Frustrating for someone who has always processed verbally.  I am also limited by tone of voice -- the voice provided does not allow for change in inflection.  And, it requires energy to type, so I try to shorten the words I use.  Even my family has a hard time with that, and take something I typed out of context, or differently than it was intended.  I cannot control that.  And think about how it would feel to know you will never speak again.  Never.

Think about getting dressed.  Putting on your underwear, pants, top, socks and shoes.We all have our rituals.  Where we want our underwear, pulled up high, or riding lower.  How tight your socks are at the toe.  How you adjust your pants, or your sleeves.  Even the order you do these things every single day.  Someone else dresses me every morning.  Two different people.  Doing this in their order, and in their ways.  I am learning to accept it, but it is difficult.

Privacy.  Space.  I have always been an early riser.  I used to cherish early weekend mornings, making coffee and reading a book, looking at the view across the lake, or even watching an old black and white movie with Kathryn Hepburn.  I enjoyed that space to myself before the day became busy.  Someone else must get me out of bed..it is quite the procedure.  I can still enjoy the view or watch an old movie, but not that quiet solitude. There really is nothing I can do alone now.  I appreciate the care I am being given, but I miss being independent and having that freedom.

It is difficult to read a book now as turning the pages takes effort.  My Nook is wonderful, as long as I don't need to hold it.  I miss cooking, I miss eating.  I miss even tasting the food.  The smells and sights are great...but I really miss the taste and texture part.  It is hard to go into a restaurant and watch everyone eat, that was such a big part of our social life.  I don't think we realize how many things we do revolve around food and drink.  Again, I am adjusting, but it is sad to know I will never eat solid food again.

I am so thankful for my wheelchair, which allows me to be somewhat mobile, and can change my positions. With no voice, and only one hand to operate it, I cannot say "excuse me" or "i'm sorry" if I am in the way.  Or "thank you" if someone holds the door for me.  To do that requires me to stop moving, and type --which means I am impeding traffic.  Things I never considered.  I was always in a hurry--now there is nothing hurried.It is hard to look up at people to talk all the time, too.  Especially with my neck so weak. Think about even looking for groceries on the top shelf or two!   My chair will raise (a feature we paid extra for), but it is not always safe or practical to do so.  So, a trip to the grocery store becomes a tiring event, even though i enjoy the outing.

I do not mean to complain at all.  But I think it is important to share what is really happening.  My body is failing me.  Exercise does not help.  I am becoming a brain trapped in a nonworking body.  Try going an hour seated in a chair, without speaking or moving anything but your head and one arm.  Not moving feet, legs, or your other arm. That is me all day, everyday.  Many people have told me I am inspiring, strong, courageous.  I don't feel that way.  I feel that I am ill-prepared and weak.  I talk to God a lot.  Each morning I get up, hope that things aren't too much worse, and am thankful for the day.  I am thankful for the people God has placed in my life.  The people who visit me, text me, hug me, pray with and for me, and love me.  I could see this as a big old sinkhole, and in many respects it is.  But I prefer to see a series of potholes, and put my life and faith in our Heavenly Father, because I know He is working in my life, He is filling those holes..  We are all dying, just at different times.  What are you doing with your days, your journey? Are you in a sinkhole or a pothole?  Remember, potholes can be filled.