New Year's Eve in Whitefish

Came home to a nice table set and dinner prepared by Dolan and his cousins.  Big Mountain was fogged in, so we couldn't see the torchlight parade and the fireworks, alas.  But we have enjoyed the snow and mountains so much.  Last night we had dinner with good friends in Kalispell, and laughed so much at the stories of Wayne working in the Butte mines.  Not that his work was easy or funny, but his way of telling about it sure is!

I haven't been able to ski or ice skate, but I enjoy just being here.  Yesterday afternoon Paul and I snowshoed down to the base lodge, and then back!  It seems that I can still do that, with my brace and  the two snowshoe poles.  Pretty exciting!

I hope everyone has a good 2014.  For me, it has to be better than 2013, after all!

Santa Claus is comin' to town (sings Bruce Springsteen in the background)...

Wrapping some presents...pretty well done, but one last big one to do.  Made cookies today, too.  Definitely feeling the Christmas spirit (and three friends brought treats to my front door!).  However, I am beginning to realize that some things are definitely in the last-time-I-will-do-them category.  I can barely use scissors correctly now, and anything that pushes my right hand (other than typing, fortunately) shows up all the weakness that is taking over.  I am focusing on all the many things I will still be able to do, and not being able to wrap presents is no big deal, really.  Still, it's a little farewell...like not being able to skip, which I thought of today while watching "The Santa Clause" and seeing the elves skip away.  I loved to skip, even in heels.

Tomorrow I head out early to Great Falls (two hours south) to get my new ankle brace.  I have been tripping more lately (and not in the good, 1960's, way!).  I am down to only a few pairs of shoes that I can wear with a brace, and two pairs of boots that I can wear without and still have some support.  Man, giving up my shoes has been really hard...and heels...sigh.

But we have a white Christmas, so who am I to complain?!  Merry Christmas to all, and to all a good night!

Baby it's cold outside...

Currently it's -35 degrees Fahrenheit in Havre, Montana.  Outside is eerie...still, quiet, and billowing vapor from all the furnaces and boilers working overtime.  Dolan and I were driving home, and saw a black cat running VERY fast (you could tell it did not want its paws to touch the icy ground), and a lonely tagged dog running across the street.  We were sad for all the animals outside tonight in this weather. 

Dolan said if he ever wins the lottery, he will have a big house, with a big barn to welcome all animals in on nights like this.  First he'll bring in all the deer, then the predators should happily follow!  (He wasn't hoping for carnage; just a way to protect the bobcats and mountain lions!)

Crazy place we call home, eh?

The cold didn't keep folks in today, so the St. Jude's Church bazaar was a success and the lunch tables were full.  I helped at the door taking money for purchases, and bought up all the colored lights at the bazaar's Santa's Attic.  (Imagine my surprise when I plugged them in and they're a veritable light show!  I had Christmas music playing, and they seemed to pulse to the beat!)  It was so nice to see so many people, and the support and love they all showed me was deeply touching.  I will say it over and over, if one has to be very ill, Havre is the place to be, because people wrap their arms and hearts around you.

As we will next weekend when all the churches and the Key Club at Havre High raise funds in various ways for three children with difficult health conditions.  I never ask "why me?" because I see children with cancer or MD or other challenges and I know there is no rhyme or reason to any of this.  It's how we face any of it that is important.  And I will support others in any way I can while I can.

Another goodbye, said too soon

Attending a funeral today for a 61 year old woman.  She taught special ed in the Havre Public Schools for many years, and always presented a smiling face to all.  She will be missed.

Once again, it reminds me we all have only so much time allotted to us, and we should really make the best of it.  While Nelson Mandela set the bar impossibly high for a life well-lived, all of us can make positive steps in our communities.  The legacy of a life well-lived can be simply treating others well, helping children, planting trees, or anything else that brings you out of yourself to make life better for others.

Chrissy made the best of her time here, and her legacy with the children she taught will live long beyond her corporeal self.  Goodbye.

Catching up...

It's been a while, but so much has been going on, it flew by. 

We spent a week in Virginia with my family at Pat and Jerry Warner's lovely home in Churchville.  The weather, funnily enough, was actually a bit colder than Havre's that week.  They even had snow on Wednesday (but it didn't stick).  I guess that's when we really compare Montana weather to Virginia's...today we woke to 8 inches of dry whiteness, and it continued snowing all day.  Beautiful!

Here's a couple of favorite pictures from our VA stay:

Of course, that's me with the white hair...like to pretend it's blonde, but that isn't really realistic when the camera picks it up as white!

What I think of all the time is how wonderful a life I have been given, and how I have no real regrets.  I have a loving family, both nuclear and extended, and Thanksgiving was a perfect time to remember that.

And now we enter the Christmas season with a beautiful snowfall, and I am again so very glad to be alive, and so appreciative of all I have been given in my life.  I may go sooner than I expected, but I won't feel cheated in the least.

San Francisco to Occidental!

We are spending the night in the redwoods in Occidental, California, at a wonderful house my friend Kristin found on VRBO (shameless plug). Occidental is having their last Friday market, and also a Harvest Market Festival.  Lots of people are in costume for Halloween.  It has to be one of the most charming things, except I kept getting movie images of street festivals all of a sudden going bad in some way.  Especially Halloween ones!  Too many zombie/post-apocalypse shows, I think.



Found this unposted, but will update that we had a great afternoon by the pool and listening to Michael Frantis.  New artist to me, but now a favorite.

Afternoon by the pool

Viewing upwards into the majesty of the redwoods

Winter has arrived

Sunday it snowed all day.  A great day to be inside looking out, although I wouldn't mind being out in the snow, either.  Too soon I suppose I will be inside looking out pretty much all the time.  I should get out while I can!

I am using a loaner ASO today.  I had to ask what that is: Ankle Support Orthotic.  It basically cups my foot and supports the back of my calf so my foot won't drop when I walk. I really notice a difference, although my upper legs are getting a bit weaker and so don't appreciate much having a foot that wants to walk like the old days.

My muscles seem to talk to me that way.  My left leg rebels because it's been carrying the load for several months now.  My right leg laughs at me when I try to make my foot move independently.  My right hand cramps when I try to do something in my normal do-anything-I-want-in-any-way-possible.  As much as my mind thinks it runs the show, my motor neurons are on permanent strike, and are telling the management to stuff it.

That doesn't bring me down, at least not yet. 

I have such wonderful support from family and friends, and enjoyed a wonderful long weekend in San Francisco and Occidental with three college friends.  We ate great food, talked, drank luscious wines, talked, and saw the sights of SF and the redwoods...and talked.  Everything I could have asked for, having never been to SF before.  What a cool city!

Cathy, Kristin, and Caty, you gave me such a wonderful gift, and I will always treasure the memory of this weekend and your enduring friendship.  Thank you!

 

And this weekend, Paul's friends came up to hunt, but mostly to spend the weekend eating and talking.  Seems guys and women really like the same things after all, even if we think we are so very different!

 

 

 

Still smiling, but sometimes it's hard...

Fell today in the backyard.  Fortunate to fall on our soft lawn and the fall leaves, but my left wrist (that did the brunt of catching me) and shoulder and neck all feel a little wrenched.  And wretched.  Sigh.

This is really the first time I have fallen full bore.  I guess I am going to have to stop acting like I can do everything I used to do, and take things a little slower and more carefully.  That is pretty foreign to me, but looks like the best option.

My dear friends from EPA, Julie and Stephanie, met me in Ft. Benton at the Grand Union last Friday.  We had a wonderful couple of days, starting with a great dinner at the Union Grille, and then a lovely chatty night and morning, and a drive on back roads to Tiber Reservoir to the see the North Central Regional Water intake facility.  I feel very involved with that, having supported Havre's participation (to guarantee a future increased water supply) as a council person early in my first term of office (2003-2007).  I like that we looked beyond our generation to do something for the next one.

I am fortunate to have such good friends, and Thursday I join William and Mary friends in San Francisco for a long weekend!  We have plans to tour wineries, do a spa morning, and generally enjoy talking and eating and drinking good wine.  What more can one ask of a long weekend, far from northcentral Montana?

I am driving down and back to Great Falls (2 hours) alone to get to and from the airport.  I am hopeful I can navigate the Salt Lake City airport with no difficulties with a 2 hour layover, but on the way back I had to order a wheelchair.  I had to use one in Dulles last summer, and I really do not relish the experience, but I cannot chance missing the plane. 

Pride goeth before a fall.  Literally.

Progression

Progression in ALS is not a good thing, unfortunately.  Today I almost fell down the stairs at work, and I should have taken heed, as later on I thought I could hurry across our tutoring lab to answer my phone, and I tripped right at the end and went down hard.

That is tough for me to face, but I will do it.  I am not able to do what I once did so very easily, and it makes me pause to think that is all in my past.  Still, I have much to look forward to in my future, and while different, it will still be good.

22 days and counting until my Cali Girls Adventure!  See, each day can be joyful.  You just have to look for it!

Had to say goodbye for a while to my favorite pair of casual heels this morning.  I put them on, and immediately started to tip over.  Dang it.  That is NOT a good thing.  I am holding tight (literally and figuratively) to my mules, but they may go the way of my heels soon, if I can't grip them with my toes.

This is an interesting disease, in how it progresses even while you live your life as you always have.  I guess all diseases are like that, although with ALS you really don't have any treatment, so it seems like you have even less control than you would over, say, cancer.  They all stink, frankly, so I guess it's a moot point.

Off to work, on the second rainy day in a row.  Fall has definitely arrived.  The rain and clouds actually seem restful and comforting.  For now, that is.  I will still relish sunny blue skies!

The little things in life

Okay, perhaps only a woman with ALS would be writing about this, but I just finished coloring my hair (I  used to say "dyeing," but a college girl told me you only dye Easter eggs!), and as I did it, I realized this may be the very last time I can use my hands in this way.  Each day my right hand challenges me a little more, and I have 28 shampoos to go!  Will my right still be operative for such important activities in 46 days?  (Yes, I admit, I shampoo every other day.)

Now, as tongue in cheek as the above is, I still pondered that, and it is just another things that I realize will be a memory soon. 

Like driving a car.  I was driving yesterday, and while I am still fully capable (well, capable), I know that eventually my right leg will not be able to press the accelerator, and I will be done.  That cannot happen prior to October 24th!  I need to be able to drive to Great Falls to catch a plane to San Francisco to join my college girl friends Cathy, Kristin, and Caty (great alliteration!) to tour California's wine country and visit spas.  No ALS will stop that from happening!!

Off to work on a beautiful last day of summer in north-central Montana.  Life is good.

And my hair is colored!

September is waning

Havre has had a very warm September, but everyone says we'll have an open, very cold winter.  For those who don't know, open means little snow.  I know that I prefer it to be VERY snowy if it's going to be cold!  I may change my mind if ALS makes it too hard to maneuver in snow.  That will be a sad day.

Oh, no, I said each day is joyful! 

I am definitely feeling progression.  I seem to be losing touch with my right hand.  That is pretty annoying, but as long as I can type and play the piano, I won't complain about a little weakness.   I do tend to lurch about as though I am drunk, and no, I am NOT!  :) 

We had a beautiful storm and rainbow last evening.  The sun shone through the heavy rain for a most wonderful effect.  Here is the best picture we could get.  Thanks, Caroline; I had raw chicken on my hands at the time.  Thanks, Dolan, for drawing our attention to it!

 

Rainbows are signs of hope.  That is something we hold tight to at this point, but even if our hope does not come to fruition, the end does not worry me.  The in-between part might be a bit hairy...

Life is good, despite shooters in D.C., car bombs in Iraq, and all the other pain we inflict on one another.  It's still a good thing to be here and be loved.

Little goodbyes

Last night I broke my absolutely favorite, hand-made ceramic mug.  It was a great shape, fit my hand perfectly, and was a lovely shade of grayish brown accented by a forest green.  I knocked it off the shelf while getting other, much less valuable, mugs down to take to work.  I just said, "no no no I am so sad" as I looked at its shattered remains.

And then I thought, "really?"  It's a mug.  An object.  Am I that careful with my children?  How many times have my words broken them?  In the circumstances, things mean very little.  People mean everything.

Once again, perspective jumps in to save the day, and my composure.


I still loved that mug, though.  :(

Labor Day thoughts

Spent Saturday evening enjoying the University of Montana Griz take on Appalachian State Mountaineers.  Great game, and the Griz are back in their old form.  Should be a good year, and that means a lot to Paul and many others in Griz Nation.

Sunday morning breakfast at The Shack in Missoula sitting at an outside table.  So nice on a cool morning; felt like I was in the big city (but quieter and cleaner!).  Another wonderful experience.

Paul, Caroline and I headed down the Bitterroot Valley, visited my organic farm area (was it really almost 30 years ago I was an apprentice there?), and marveled over the changes to the valley.  Then we cut across to Wisdom, and had a lovely visit with dear friends.  The Tinsleys are wonderful hosts!  But I still should have cashed out my keno winnings at $6! :)

Ended Sunday night with Belfry family in Opportunity.  [If you want to read about this interesting community, I suggest the following book: http://www.amazon.com/Opportunity-Montana-Copper-American-Landscape/dp/0807003298]  My sister-in-law has severe rheumatoid arthritis, and when I think what she goes through every moment of her life, I can place my situation in perspective.  We all need to find cures!

 

Here back in Havre with Paul, Caroline, and Dolan.  I am so blessed to have my family, and know that whatever the end result is, I have had such a good ride in this life.  I have no complaints, no regrets.

One final thought:  Let's remember what this day stands for: celebrating the laboring class of America.  Labor is the backbone of our capitalist system, and we forget that at our own peril.

First Day of School and a little bit of God

Caroline started 8th grade today, and when I asked her how it went, she said "Fantastic!" very enthusiastically.  That made my heart happy.  I want her to love school both academically and socially.  I want Dolan to find his way in the world.  I want Paul to be happy.  Really, in the end, if I know all those I love are taken care of, I am okay with whatever happens. 

Not to say it doesn't still sadden me a little when I see someone on a long walk, with long, strong strides like I once was able to do.  Then I remember that I am still walking, albeit slowly, but under my own power.  I am thankful for that.

A friend prayed over me today (although I joked about separation of church and state, as we were at work).  I am a believer of sorts, in that I don't disbelieve, and what I pray for is simply acceptance, grace, and strength.  What truly strengthens me is the kindness of the people around me.  If one has to be in a difficult medical condition, Havre is undoubtedly one of the warmest, most embracing places to live.  The community is astoundingly supportive of their own.

My right leg muscles were having a great time dancing to their own beat last evening while watching the March on Washington on PBS.  It's interesting how they move of their own accord while in a restful state.  I guess that's why PALS get tired so much...near-constant muscle movement.  Too bad it doesn't help me lose weight.  :)  [I know, I know, that will come soon enough.  Too bad I can't enjoy it while still on my own two feet!]

Home in Havre

Saturday morning with the family all together.  Going to enjoy the last real summer weekend.

School starts back up for Caroline this Wednesday...8th grade!  I aim to see her graduate high school...a doable goal,  even with ALS.  Heck, I aim to see her graduate COLLEGE!  Dolan, too!  I just can't picture it any other way.

 

Billings and Blue Moons

In Billings, Montana, for the week.  Last night the blue moon rose so beautifully with added copper lustre due to the Yellowstone and Red Lodge fires.  Tonight, we had dinner with our favorite priest, Father Bob, and talked Catholic politics and good music to our hearts' content.  Pope Francis gets two thumbs way up! 

Today was a little distressing, since my arm muscles decided to let themselves be heard from, and not in a happy way.  I can handle the legs slowing me down, but please let the right arm especially hold on for a long time.  It'll take a while to train my left to do the job my right has done for 53 years.

Indeed each day is joyfilled

Had a great evening celebrating my dear friend Debi's 50th birthday...I had to get her to the surprise party without her knowing.  I could use my ALS to say I needed to talk with her over a drink!  Sadly, I did have a reason...seeing a stranger incapacitated in a wheelchair yesterday brought me down to earth about this disease and where it will likely lead me.  But it was still very convenient in pulling her away from her task of putting together a video presentation of Kris' life for tomorrow's memorial service. 

Did I mention I live in a very small city in north central Montana?  Everyone knows everyone, almost.

In talking with friends later, the woman asked if it's easy or hard to talk about my ALS.  Paul and I both quickly responded, "easy."  It's much harder to tell people about it for the first time, because we are not sure of their reactions.  Kellee cried and had to stop cutting Paul's hair when she found out (because Paul mentioned Sturgis SD as a side trip on our way back from Rochester MN).  we don't want our friends to be sad.  This is what it is, and being given the gift of time to say goodbye and have fun with friends and family is a very fine gift indeed.

Thinking of all the Bakkes tonight, and of Debi still working on the video at 10:30 p.m.  Our prayers are with you all.

Hot and Green

Mowed two big lawns.  The lawn mower is a good support, but the 85 degrees and inclines did me in.  Thank goodness we have a parachute hammock strung between two shady trees.  Nice to lie and swing and look up at the blue blue sky through the branches.

I love mowing lawns, and will do them as long as my legs keep working.  And my right arm agrees to push!

Chance to say goodbye

We lost a friend this week...a 45 year old died unexpectedly from a heart attack.  In talking with a coworker, who recently lost her husband after a long illness, but also lost her adult son to an accident several years ago, we decided that being able to say goodbye can make all the difference to the people left behind.

I am thankful to have this opportunity to know my end can be coming sooner than I might wish, but that I can make the most of each day, and be sure to tell friends and family that I love them.

Rest easy, Kris, and our love to your family.

If I never see Ireland

On July 31, 2013, I was diagnosed with ALS.  This was not a bombshell; we have been thinking this was a strong possibility for a few months now, as the doctors struggled to determine what was causing my right side weakness.  I had wondered how I would react when a doctor actually said “it looks like it’s ALS,” and I think both Paul and I took it well.  Stoically, perhaps, although tears were shed by me when I tried to express how the only real sadness is thinking that I will miss Caroline growing up.  Even now, that can bring on a wave of sadness.

ALS (amyotrophic lateral sclerosis) is a wicked disease that slowly robs you of the ability to move your muscles voluntarily.  Your senses and your mind remain intact, while everything else shuts down.  When I think about this, and I try not to too often, I feel like it’s the worst thing that could happen.  Then I work on myself to get some perspective.   People are faced with difficult challenges all the time.  Cancer is a wicked disease that knows no boundaries and has touched the old, the young, and everyone in between.  Cerebral palsy robs children of an easy childhood.   COPD and asthma steals your breath away, literally.  Violence robs us of people suddenly.  ALS is just one other type of disease that, while admittedly terminal, is only limiting if I let it be.

When confronted with a terminal diagnosis, people often decide to do things they never have done but might have wanted to do.  My brother went skydiving with his son while fighting the cancer that was to kill him shortly afterward.  Other people take trips, write books, visit family.  Each person’s journey to the end is as personal as they are, and as variable.

I do not know how long I have left on this planet, but not one of us really knows, terminal disease or not.  In the end, if I never take that trip to Europe with Paul that I have wanted to, or see the Chinese Wall in the Bob Marshall Wilderness (or the Great Wall of China, for that matter), if I am able to see beautiful sunrises and sunsets, lovely days of blue skies, tremendous thunderstorms that remind me of Nature’s power, rainy days that refresh the land, and a soft, quiet snowfall, I really have seen the best the world has to offer.  If I see children play and hear their unrestrained laughter, and can still listen to the music of the world and my family’s voices, I will be happy.  Even if I never see Ireland, if I see the faces of the people I love (and I have been fortunate to love a lot of people), I will be content. 

Death seems so dramatic when you aren’t faced with it, but I have found that, now I am given an endpoint to my life, I realize I will just continue doing those quotidian things that I have always done, as long as I can, and it really is okay.  I have no regrets, and I think of the poem Father Dick recited at our wedding long ago at Georgetown Lake:

“I have loved, and I have been loved, the sun shone sweetly on my brow.

  Dear life, I am at peace, dear life you owe me nothing now.”

 

(Okay, okay, we know that's an awkward wedding poem, and perhaps far more apt for a funeral, but you have to know Fr. Dick to appreciate it.  He gave the best wedding sermon!)