#13 - Lemonade For Katy

What an entrance to summer!  For those of us in the Pacific Northwest, we joke that summer doesn't start until after July 4.  However, our temperatures have been consistently between 80 and 100 degrees F  for the last two or three weeks, and projected to remain there for at least the next couple of weeks. At least it cools off in the evenings!

Every change of season evokes childhood memories and traditions.  In our family fall brings first days of school, Oregon State University football games, Halloween and Thanksgiving; winter brings basketball, Christmas, riding ATVs in the sand, and snow days; spring brings a break in the weather, spring break in Palm Spring and working in the yard.  Summer has always been full of family vacations, water sports, outside entertaining, and even lemonade stands.

In early summer twenty-three years ago, we enrolled our son into a daycare/preschool near our home in Beaverton, Oregon.  The preschool was located in Shepherd of the Valley Lutheran Church, which soon became our home church, and where Pastor Al Solmonson baptized our two children.  Al and his "flock" welcomed us into a congregation that immediately felt like family.  It was hard to leave when Bill's job relocated us to Washington state three years later.  God's hands work in mysterious ways.  Al has since retired, yet he and his beautiful wife, MaryAnn, continue to be important members of our fanily.  I told them a couple of weeks ago that we may not have a "home" church right now, but I considered them to be my church family and Al my pastor.

Al and MaryAnn have two granddaughters in the Tacoma area.  For the last couple of years they have had a lemonade stand in their driveway on the 4th of July to raise funds for various charitable causes.  They plan it, make signs and operate it.  Some valuable life lessons here.  Early last week MaryAnn surprised me with the anouncement that Ava and Olivia were going to donate their proceeds this year to the Katherine D Carter Scholarship fund.  (For Christmas this past year Bill set up a scholarship in my name.  This has always been a dream of mine, although I never told anyone.  Guess he knows me pretty well after 29 years together).  Needless to say, I was very excited and very honored.  I made sure to request photos along with passing along my thanks.

True to her word, MaryAnn not only emailed photos, but videos as well.  Smiling joyful young people, raising money for a very worthy cause.  More importantly, young people spreading joy, enthusiasm, awareness and even some lemonade.  What a life lesson -- when life hands you lemons, make lemonade.  If you can't make your own, share your lemons with someone who can.

MaryAnn and me

Olivia

Ava

#12 - “All journeys have secret destinations of which the traveler is unaware.” ~ Martin Buber

It has been a tough few weeks.  After my most recent doctor appointments we have had to have some hard conversations.  We know my time is winding down -- I am not giving up, just being practical.  In one of my conversations with my husband, Bill, he mentioned that he was sad about all of the things we would now not be able to do together (retire, travel, etc.)  My response was to remind him of all the things we had already done together, as a couple and with our children.  I think this is one of the ways I keep from wallowing in the pit of despair -- I have had such a great life with this man, and we both took so much for granted.  I am writing this post for Bill, and for our children, Maxson and Madeline.

Our first official date was to sail his sailboat, a Hobie Cat 16 footer.  We were supposed to be in a regatta (race), but the weather was rough.  We drove to a different lake with some of his friends, and sailed there.  My first time ever.  Was terrifying, exhilarating and fun.  Second date -- sailing the Hobie in a regatta in Newport Bay, Oregon, where I learned these regattas were two long days of sailing, and how competitive my future husband really is.  That would be the weekend it rained both days, we camped, a sea lion surfaced under my behind while I was hanging over the bay at full speed ("flying a hull"), and I was thrown off the boat when it tried to flip.  Bill sailed the catamaran back to pick me up, but just yelled at me to grab the rail as he sailed the boat over the top of me, and while I was dragging through the water, told me to climb back on.  We were in the middle of a race -- no time to stop!  I did as directed, after all, I knew there were sea lions around me!  We actually won a trophy in that regatta, and I earned the first of many many bruises.

That occurred in April and May.  In June, we went camping with other friends to the sand dunes in Winchester Bay, Oregon.  Yes, my first experience riding ATVs (a 3-wheeler at that time).  I was doing pretty well.  I am not a big risk-taker, so I wasn't going too far outside my comfort zone...okay, maybe a little.  Next thing you know, I am tumbling down a good sized hill, with the ATV bouncing on me a couple of times.  My first trip to the Emergency Room.  I was lucky (and wore a helmet), but it still took eight weeks before my ribs quit hurting.  You may see where this is heading.

April through October was sailing season, summer also included ATV trips, and both of those entailed tent camping. Lots of tent camping.  By the time winter rolled around I realized I would be snow skiing.  I could ski -- self taught, very cautious on blue trails, still terrified of chair lifts.  Dating a guy that signed us up for city league ski racing at Mt. Hood on Friday nights.  Yes, racing -- down slalom courses, with starting gates that feel like the top of a 500 ft drop off to nowhere.  Yes, I did it.  Did I place at the bottom?  Yes.  Did I get better?  Yes.  In fact, in one of my last races, I was winning by quite a margin.  I lost my left ski.  For some reason, I kept going, on one ski.  I could hear the announcer -- he was incredulous, and started cheering for me.  Everyone along the course were yelling, too.  I finished the run, losing the race, but winning by every other measure.  Even my competitive boyfriend was impressed.

Since then there have been so many more "firsts" for me.  Snorkeling in Hawaii on our honeymoon and coming within mere feet of a moray eel, which caused me to swim back to the boat "faster than an Olympian swimmer," according to the boat crew, who were laughing hysterically,  Learning to waterski on a slalom ski at age 36, then trying to barefoot waterski, only to hit the lake surface with my face multiple times at 33 mph -- coming up with my eyelids inside out.  And no, I never mastered it.  Parasailing in Mexico, where I had to overcome my fear of heights only to realize while I was VERY high in the air, that the only thing keeping me from splatting into the ocean or a high-rise hotel was a yellow nylon rope.  (Did not need to repeat that one).  Swing dance lessons with Bill, where I learned I don't follow well. Taking houseboat trips from Canada to California, building lifetime friendships and memories for our children.

We even joined a yacht club -- and served as officers.  We were lucky to own beautiful boats and explored the Puget Sound from Olympia into Canada.  We led the Parade of Lighted Ships for three years.  I learniedto ride a dirtbike, not well, but ride at age 40.  Kayaking and river rafting with Bill in Alaska for our 15th anniversary -- one of only two vacations we took without the kids. Finding petroglyphs in southern Utah with our friends Larry & Candy McKay and resident expert Jason Campbell.  Going back to college after graduating 22 years before, to become a teacher -- now THAT takes some courage! Coaching basketball, teaching math and science. Boating and camping with other great friends in Eastern Washington, cooking for 30-40 people at a time, drinking too much -- and laughing every possible minute.  Riding with Bill on his Harley-Davidson in the sun, rain and even the snow during one Olympia Toy Run!  Lots of experiences with friends that became family.  And all of them helped build my courage for this last journey with ALS.

The very people who have commented about how brave I am, or how inspiring are some of the very people who have helped me become this person.  I have had amazing adventures with amazing people.  I am truly blessed.  Appreciate your days, every one.  Appreciate your friends and family -- you don't always know the roles they will play, or the secret destinations of your journey.

#11 - "The Most Important Thing Is Not To Stop Questioning." (Albert Einstein)

As a former math and science teacher, I always emphasized the importance of questions.  When you question something you are engaged in thinking, wondering, trying to make connections, trying to learn.  One of the most frustrating things about teaching was realizing how fearful students are to ask questions, to be wrong.  Instead of asking questions, or even formulating questions, they shut down their engagement in the hopes of being invisible. It would take months to create a culture where asking could happen. I would always share my personal philosophy with them, that:

1. If you always know the answer, you aren't learning anything new, 
2. Some of the most important learning happens when you are uncomfortable, and
3. Better to make mistakes or be incorrect during learning and practice than during test!

I always had high expectations of my students, my own children, and myself.  Still do.  And I have a lot of questions.

Let's start with some obvious ones.  What will happen next?  Do we need new medical equipment?  Can we get the equipment?  Will insurance cover the equipment? How much longer will my right hand hold out?   How much time do I have?  Closest thing to an answer:  Who knows? (another question) Every week brings new challenges.

Most recently: Can I receive my retirement early? (to help pay for my care -- our out of pocket alone was almost $30,000 last year)  Can we find a reclining shower chair since I can no longer sit upright very well? Is it time to go to Hospice care?  How many doctor appointments do I have this month?  How can we get an Eyegaze speech generating device? (Which are tens of thousands of dollars, and our insurance denied us twice) Big break here!  My sister connected with our area ALS contact and they just had one turned in, so I get to use it!  My ability to type is diminishing day by day.  That tool will soon be my only communication.

Most importantly are these questions. How much more can my husband take?  Working full time (from home as much as possible) so that we can afford the thousands of dollars not covered by insurance for my care, and to keep our daughter in her last year of college.  Watching his life partner get weaker by the day. How are my children handling this?  They aren't going to tell me, I know.  But are they telling anyone?  How are they getting support?  I have no control over these questions.  These are the questions weighing on me.  In my head and heart I am still a wife and mother, even though I can no longer act in those roles. Who will do the things I had planned to do for my children when they get engaged, married, have babies?  Who will have the "mom" talks with them?

Questions, questions, and yet more questions.  This is when I turn to God.  I cannot control everything -- even though I have always tried.  I may not be able to stop the questions, but I have to trust Him to take care of the answers, to take care of my family. If you are reading this blog, my question for you is, will you pray for my husband, my children, my sister (who is helping care for me)?

Lastly, when will they find a cure, so that no other family has to go through this experience?

#10 - On Faith, Hope and Love....

Even with a fatal diagnosis, I have faith.  After all, we all live with a fatal diagnosis...we just all come to the fatal parts differently, and on different timelines.  Faith is different things to different people. When we read of faith in the bible, it usually implies confidence, trust, reliance and humility.  The Merriam-Webster Dictionary definition is "strong belief or trust in someone or something; belief in the existence of God; strong religious feelings or beliefs; a system of religious beliefs.  What do I mean when I say I have faith?

First of all, I believe in God. I believe in Jesus Christ as His only son.  I pray...all the time.  More now than before my diagnosis.  But then, I have more time.  I have confidence that my prayers, along with anyone else's, are heard. I have trust that prayers make a difference.  I rely on my belief and my prayers to ease my burdens of fear, sadness, anger and loneliness.  And I am humbled by the blessings happening in my life, and that of my family during this journey.  I have strong beliefs - about God, about my life, my family, and friends - FAITH that this journey is not the end. 

About Hope.  I received the most amazing Valentine's gift this weekend - from an amazing young woman, named Hope.  I have known her mother for over 17 years.  Our children attended the same elementary school.  Hope was my student in 7th grade.  We have really gotten to know each other better since then.  She is a gifted athlete, a hard working college student, humble, charitable and beautiful from the inside out.  She brought me a basket full of bright primroses, and at least two dozen sealed envelopes "from people who love you dearly" (her words).  Strict instructions to only open one per day.  I am obeying the directive, thank goodness.  Each letter has required multiple tissues. I was speechless.  An incredible gift from a remarkable young woman, and every person that contributed.  It is the best way to start my day - morning medications, get dressed, pick a letter to read at breakfast. Each letter feels like a hug.  

This brings me to love,  ALS steals our lives, one part at a time. Steals ability to move, to speak, to eat, and eventually to even breathe.  But I am still me.  My heart still beats, my brain still functions, I still have feelings, physical and emotional.  I still love.  And still feel loved.  In fact, the love in my life has multiplied and been magnified.  The blessings...time to say things that should be said (in my iPad app's voice, "Heather"), time to listen to others. Listening more than talking (what a concept!)  It is easy to feel lonely with ALS, especially as it progresses.  Hard to get out, difficult to communicate. But our house is filled with love, all the time,  Cards, letters, visits, flowers, texts, emails, laughter, tears, hugs.  So appreciated, cherished and shared.  So much love.  I am blessed beyond measure.

Faith.  Hope.  Love.

Valentine's Day 2015
with Hope

#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.