#7 - "You may not find a path, but you will find a way" -- Tom Wolfe

Today I told one of our home health care team that the hardest challenge we are facing is not being able to keep up with the rapid progression of my disease. Even though we try to get a step ahead, the process slows things down. Without complaining, I want to give you a glimpse of daily life today.

I wake up early, as always. Bill is still sleeping, and I don't want to wake him yet, as he is not the morning person I have always been.  I have to use the bathroom, but I will wait -- as I can no longer get out of bed on my own.  So I read my Nook, or check Facebook or my email, or maybe doze off for a bit.  If I am lucky, Bill wakes up before long -- if not, I give in and wake him up.  Getting up now requires the removal of the Bipap breathing machine mask, and disconnecting the feeding line for my feeding tube.  Then, Bill has to swing my legs out of bed, and help me sit up --then bring the walker for me.  The walk (shuffle) literally takes 4-5 minutes. It is about 20 linear feet.  I need help on and off the toilet.  I consider myself lucky I can still use the toilet on my own.

To save time, I often get dressed there ( yes, really).  Bill has had to ask what clothes I want, and tried to find them. He cannot tell the difference between pink and coral, navy and black, or green and turquoise, so it often takes 3 or 4 picks.  He does this without complaining.  Once dressed, I get helped up, and shuffle with my walker to the sink, where I wash my face and brush my teeth--with one hand.  My left hand no longer works to hold anything, open anything, or really help.  I can use it to help steady myself against the counter.  Then, I shuffle to my wheelchair.  This entire time, Bill has been by my side.  It has taken the better part of 45 minutes--a quick morning.

Off to the kitchen, where Bill crushes my first pill of the day, mixes it with juice, then gives it to me to drink.  Only then does he take a shower and get dressed.  I read, check email, enjoy the morning view and wait to have breakfast--I have to wait an hour after my medication.  With the feeding tube, I can now have my protein drink in a couple of minutes, instead of the 20 minutes it used to take to swallow it.  That is progress!  But, again, it is Bill that has to prepare the syringe, water, drink, and other medication, then clean it up.  Somewhere in here he usually squeezes in a cup of coffee and toast with peanut butter.  Usually we are now at about ten o'clock -- and I need to use the bathroom again ( with help) -- another 10-15 minute adventure.

I haven't yet mentioned that, in spite of my best efforts, only about 10-20% of my speech is understandable.  So all communication is a mixture of American Sign Language ( thank you, Kyle Brossoit for that exposure), charades, and an app I found for my Iphone.  It takes forever.  Lots of guessing on Bill's part, and frustration and creativity on my part.

Most every day is filled with people in and out.  Physical and occupational therapists, speech pathologist, nurse, bath aide (I can no longer shower on my own, either), friends, family.  A great break for both of us--but tiring for me, too.  Speaking, or even typing with my speech app takes energy.  In between visits, I read, sew ( am making baby blankets--goes slowly with one hand and a foot that can barely work the pedal), sorting photos, making lists, sending emails, and shopping online.

Think about shopping.  Bill hates shopping.  So, while I used to buy shoes, clothes, groceries, gifts, etc., this now is a whole different challenge.  I do like those boxes from Amazon, though!  I get out a couple of times a week -- even grocery shopping at Fred Meyer is an outing.  I can drive my chair right into the van--and then Bill hooks up two straps.  I pull forward so he can connect the other two straps and my seat belt.  Voila'!  off we go.  If we are lucky, one of the van accessible handicapped parking spaces is open. It takes a full 8 feet for the ramp out of the van and my chair.  Now, we have to undo the four straps so I can exit the van.  This process is about ten minutes.  Again, this is all Bill.  All our communication is my weird mixture of "slush", charades, and my Iphone app.

Kids are fascinated with my chair--my favorite moment has been when the mom of a 4-5 year old boy asked me if I would answer a question for him.  He wanted to know why I was in the chair.  I so respected that mother.

More of the same all day--but let me add that my meals are blenderized food--Bill has become the Master Blender--he can blenderized anything.  Even pizza. If it not just the perfect consistency, though, I cannot swallow it.  Picky, picky.  Bedtime is the reverse of morning--help getting undressed, using the bathroom, getting meds prepared, hooking up the feeding line and the breathing machine--again, all Bill.  And getting food at night means needing to use the bathroom in the middle of the night--unhooking my machines, helping me out and back in bed, etc.

Notice this is just about taking care of me--he still has been working, paying bills, helping our kids, managing other household issues, and has to be my personal secretary and scheduler because I cannot speak on the phone.  It is exhausting for Bill and frustrating for me, because I really can't help.  It is also lonely and frustrating to be unable to speak. Sometimes it is too much energy to write or type a sentence--so it is left unsaid.  I have many conversations inside my brain--some really funny jokes, too!  It's just that no one hears them.  Now you know why I may be laughing out of the blue.

There is no marked path for ALS--no map.  It is moving faster than we want.  We truly take one day at a time.  We continue to be as independent as we can--but that is getting more and more difficult--for both of us.  We have been blessed beyond measure by friends and family--people who have bravely helped in a myriad of ways.  I don't think either of us expected the outpouring of love we have received.

A word about the Ice Bucket Challenge for ALS--I feel so lucky to be living during this social phenomena--and to be able to be a face that people can put to this horrible disease.  If my experience helps find a treatment or cure for others, that will be a silver lining.  I am touched and humbled by the people (friends, family, former students) that have participated on my behalf--and those who keep me in their prayers. God is good--and we have received many blessings through this trial.

A year ago...just 12 months...getting my classroom at Tumwater Middle School ready for the new year, hiking Mt. Rainier with dear friends from Europe, swimming, cooking, shopping, driving, talking (a lot), working out.  Above you read how life has changed.  I still believe in the silver linings -- I am finding my way through -- with lots of help.