Clarity

As my health becomes more compromised, I am trying to find clarity as I approach the end. I read about death so as to understand it better. I think about each thing I touch, assessing its immediate value and trying to determine if it will have value to others when I'm gone. I let my thoughts wander to the tidying up of the house post-Pam: the removal of all this medical paraphenalia, the selling of the van. I can feel the desire to control beneath the desire for clarity.

What is clarity to me? I think it's recognizing what lies ahead and facing it clear-eyed. Realizing (while not always acting on) what's truly important, which at the end is always only the relationships one has forged in life. I was reminded of this the other day when I was guest of honor at a luncheon and the dedication of a tree and plaque at the Boys and Girls Club of the Hi-Line. To know a tree will grow strong and tall and shade children for many years to come is the greatest gift I could ever receive. Receiving it before I depart is even more special. As I always say, ALS is giving me the opportunity to see all the love that is out there!

I have the ability to focus on these things because I am fortunately not worried about finances. We are blessed with good insurance, good jobs, good savings, and family and friends who take care of us.

I have submitted my resignation at MSUN, effective January 4, 2016. Then I start the process of getting disability determination from social security, Medicare, and hospice. I can access my retirement too, even before 57-1/2. Not that I am so far from that age anyway!

Fortunately, ALS is a disease wherein you can remain at home til the end, as far as I know. I have my beautiful room. I can't bear the thought of a hospital or nursing home death scene. Here, I am surrounded by art, music, color, and light.

Alpenglow

We get a bit of Alpenglow on the high plains, with the Bears Paw mountains to the south. We are fortunate to have them in view from a picture window. This definitely helps me face being in the house on cold winter days. I close my eyes and remember how I would go for long, leg-stretching walks on days such as these: clear, sunny, cold. ALS will never take my memories.

Thanksgiving is over. We will start decorating this week for Christmas. Then come Caroline's concerts: choir and band, and Piano and Pipes next Sunday. Advent is always my favorite part of the Christmas season; the sense of expectation and anticipation are so invigorating. I am already happily listening to holiday songs. 

I look to the future sometimes, even if I may not see it. Caroline's theater and music figure prominently. I am happy she is so involved for both her happiness and also as it gives me set points to aim for and to experience. I've had a great life and am not bitter about it ending, but I dearly want to see Caroline graduate and perhaps start college. Am I willing to have a trach tube to do that? I would have adamantly  said no, but after reading a PALS' website about how he lives well with a tube and it isn't a huge caregiver burden, I am rethinking my out of hand rejection. So I hold on, and hope to travel to DC next July to see the Blue Pony Marching Band in the  national July 4th parade.

Thanksgiving Day

Thanksgiving Day dawned sunny and bright, but a tad cold (-1).  My sister Pat and her family are in Duck, NC, in 67 degree weather. 68 degree difference. Gotta love Montana, although snow and cold are hard on mobility-impaired folks.

I've texted and talked to two of my bothers, face timed one sister. That leaves two to go. Talking is hard, though.  I am so thankful for texting, and even FaceTime allows me to see everyone and let them entertain me and know I'm listening. Talking with my brother Mike was a blessing, though, as he was in a serious motorcycle accident in October. He has memory deficits, and somewhat garbled speech, but is improving daily, thank God.

Facebook also allows communication with family and friends. I certainly am glad if I have to have ALS, I have it during a time of great communication devices.

We are spending Thanksgiving with our adopted mother/grandmother, Margaret. She's 85, but will be doing the cooking (we supplied the turkey and pies). She had a great ramp installed at her home to insure I could still visit, but I am glad it is also a benefit for her and her friends. I am glad we are spending Thanksgiving with her, as I have always believed that Thanksgiving is meant to be spent with others as well as with family. Thanksgiving is a time to rejoice in our connections with others.

We had snow yesterday. Not much, but it's so beautiful to see. I can't imagine living in a place that doesn't get snow. All the seasons are my favorites for different reasons. Actually, how can one have a favorite season or color? There is too much beauty in everything to pick favorites.

Driving to Bozeman last week

Each holiday has to be relished as though it is the last. Everyone should do this, although perhaps its most important for me to do so, as I suspect I won't be here next Thanksgiving unless I opt for invasive measures to keep myself alive. I am still not willing to do that. I am eligible for hospice, however, and that seems preferable. I don't want to drag this out. I love life, but on my terms, and Nature's terms, not on invasive medical technology's terms. Fortunately, I have my family's support in this understanding of my end.

So, on this Thanksgiving there is so much to be thankful for each and every day, but especially today: family, friends, communication technology, insurance, a great boss and coworkers, Amazon Echo, Facebook even! God gave me many blessings from birth on, and I am deeply thankful for each, and feel well-treated.

Happy Thanksgiving, dear readers!

Thinking ahead

In my chair early today, although not out of my pajamas yet. Awaiting the arrival of Bear Paw Hospice nurses for my assessment. I wonder what they assess? If they ask me, I would say I have less than a year to go, given my progression.

My voice is very compromised, especially when I am upset or anxious. Last night at city council when I brought up the failed mill levy to put on the ballot again next November, it sounded like I was crying because my throat chokes up. While the mill levy vote might make me sad/mad, it doesn't make me cry! Dang. Losing my ability to strongly argue my position is perhaps the worst thing about this disease.

Being a burden is worse. Needing range of motion PT, and no longer being able to perform it myself, leaves me needing a family member to do it for me. I have to ask every time, and it is grudgingly done. How can I ask this of them? They do so much for me already, things that I would never want done for me if I could do them myself. I want to live, but I want to stop being a burden, too, and that means dying.

So, hospice, welcome to my situation.

I promised to see the joy. There is good still. At work yesterday I successfully obtained a new tutor for a student with help from another tutor. Knowing I can still do my job, and help students, gives me great satisfaction, even if I sound like I've been drinking when I talk to students. Thank goodness for texting!

Also, I enjoyed city council and the following discussion with the Local Government study commission and five fellow council members. We responded to their questions about how we would improve communication and other city issues. I think it says something positive when the council members agreed on most items. Things that are good for the city are pretty obvious.

We are having very nice November weather. Still time to put the garden to bed, if someone will do it. Another thing that I would dearly love and prefer to do myself. I am learning to let go, but it is so hard sometimes.

A month of being thankful

November reminds me to be thankful. It was easy to be so when the first day was so beautiful. Havre was warm and clear, a bit windy but both Caroline and Dolan worked in my garden as Paul put things away and I sat on the deck. We laughed a lot, especially when I said it was so nice us all working together and the three of them looked at me and snorted. Hey, every job needs a supervisor!!

I can be thankful today for all the moisture we received, but I am also terribly frustrated with 57% of Havre's voters who turned down City Council's infrastructure mill levy proposal. 918 people with vision stymied by 1,199 people who refuse to put skin in the game to replace crumbling infrastructure . Our country was built by people willing to think of the next generations; where has that ethic gone?

That was my goal in this last year on city council: to leave Havre with a plan for infrastructure improvement. I will not be on the council after January 2, but I certainly hope this goes back on the ballot next November. We cannot turn our backs on this problem and hope it goes away.

Funny, I won't live to see the improvements, but knowing they could have happened was enough to make me happy. I'll just have to settle for my legacy being children and trees. That's pretty good, after all. 😊

Paul took the Jazzy to Great Falls to sell it. One less thing in the garage. Dolan and I were going through things there, and he and I disagreed over saving things such as his class ring and geography bee t-shirts and medals. I was all about keeping them, he was all about getting rid of them. He did want to save books. I am such a saver, and yet as my time here grows short, I really have to wonder why. Who wants years of correspondence from family and friends that I've saved? Dolan has a healthier approach.

“Why the obsession with worldly possessions ? When it's your time to go, they have to stay behind, so pack light.” 
― Alex Morritt, Impromptu Scribe

I was looking for a quote I thought I'd read years ago; something like "happy is he who can carry his possessions on his shoulders" which always guided my thoughts (but not my actions). For once, Google failed me, but I found the even better quote above.

So here I lie, unable to answer the landline or turn off the endlessly beeping alarm. Being paralyzed is annoying!

Winding down

Autumn is a time of winding down, as the garden flowers put on their last show before the frost takes them, and the leaves turn color and drop. Snow has fallen already, but soon we will see snow cover the ground.

As the fall progresses, I too feel a winding down of my life. I have to face that work may no longer be feasible. I always thought and said that as long as I could talk and type I could still work. Talking is very hard now and typing grows more and more difficult. I told John yesterday that I believed that October 30 would be my last day at work. He said that we could remain flexible which I very much appreciate. Still I believe that I need to set an end date. Otherwise, I will not be able to say goodbye. I will keep thinking that I could still do it: work with students and others. Unfortunately, my contributions are becoming less and less.

It doesn't help that I'm not feeling well. I had my operation for a suprapubic catheter. I thought that would solve most of my pain associated with the other catheter, but the pain continues. I used to think I was so strong! The pain takes me down, though, and using painkillers makes me uncomfortable. That, and a tendency to choke on air or my own saliva makes me want to give up. Not so brave and strong, am I?

I also spend time thinking about the value of my life when I cease to be able to contribute to society. Also, when does the burden my care puts on my loved ones become more onerous than dealing with the grief of losing me? They can't avoid the latter, but I can shorten the length of the former.

Those are thoughts I can control, so I am still joy filled. I got to see Caroline perform with her choir groups last night, along with the rest, and they were wonderful. I am enjoying the extended lovely fall weather, and love that the garden is still vibrant. I have the love of my family and friends supporting me. I can't wallow for long.

Catching up

Rainy autumn weekend in north-central Montana. Missed Havre High School homecoming parade and game (to see Caroline play in the marching band). Instead, Paul and I were in Great Falls at Benefis for the suprapubic catheter operation. Great results, but coming out of the anesthesia was difficult. Then, getting a prescription filled for a painkiller was a pain, pun intended. It finally ended with the surgeon meeting Paul in the parking lot of Walgreens to write a new prescription. Kind of like a drug deal!

So, whereas we thought we'd make it back for the game at least, we failed. Still, it rained the whole day in Havre, and my powerchair is not water-friendly, so it all worked out. Especially since a band parent posted the half-time performance on Facebook. Now I can see it over and over, bone dry!

My brother Mike was in a motorcycle wreck last Saturday and is still in the hospital. Life can change in a few seconds; in some ways, I have been blessed with the time to prepare. I believe Mike will recover and be okay. If I think about those killed in Oregon, they had no warning, no chance to prepare. Life seems so cheap, when I see so many the world over lose their lives so randomly and abruptly.

Joy stays, however. I have a loving family, I appreciate all the weather we are given, I have a wonderful support network of women bringing dinners once a week. And getting rid of my internal catheter for an external one is terrific. Simple pleasures, simply enjoyed.

Dog Days

August is nearing its middle. If I could bring myself to stay outside late, I'd perhaps see the Perseid meteor shower. I should; meteor showers are one of those amazing things not to be missed.

Seems these days I have a lot of "shoulds." I should record my voice. I should be doing range of motion exercises more. I should go through all my papers and correspondence. Oh, and I should write a book, write a column on infrastructure repair, write thank you notes. Yet my favorite thing is to sit in my chair on my ramp landing and watch Netflix or read or look at the garden. I feel unproductive!

I did return to work Monday. I know I still have something to offer, at least for a while. Talking is getting harder, and typing is pretty much two fingers, but I can offer students assistance, and set tutor schedules. Being at work is pretty easy--getting ready for work is a challenge.

My body still remembers being nimble, doing everything quickly, so taking 15 minutes to do something like putting underwear on is frustrating beyond belief. If I don't give myself an hour, I don't have time to do the basics. Thank goodness I never was a makeup wearer or did anything but brush my hair.

While I bemoan my slowness, I am facing having to have someone help me. Paul has been dressing me these past days just to save time. The reality is, I am losing the ability to do some aspects of dressing myself. And yet I can be thankful that I have assistance from my family. How do PALS manage without family?

I've promised to be joyful, and I can still find joy in each day. How can I not, on a lovely cool summer morning, or, as happened yesterday, a searing day gave way to a cool clear evening? Or when I accept help from people. I realized that while I am challenged to accept help willingly and graciously, allowing people to help me is a gift to them. Does that seem weird? It would to me, except I know how good I feel when I can do something that helps someone, such as when I all too briefly helped my mom in the nursing home. No, it's not all pleasant, but my family may come through this stronger. I have to believe some good can come of even this.

                                Our family reunion in Medway, Massachusetts, July 5, 2016.

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Lounging on 6/17/15

Lying in bed late today. Usually I am up around 7, if for nothing else but to pee, but today I lie here listening to Carole King on Echo. Rosie is sleeping by my feet, which feel a bit numb. I have played way too much Candy Crush.

I am not contributing enough to society. There is so much to do in life, and I just lie here. This is no way to live. I should be at the Boys and Girls Club skewering meat for the fair booth, but it really takes two good hands, and my right has faded from useful work.

I guess I did get Dolan up and to class. My voice can still do that. Is that a societal contribution?!

We are heading out Tuesday for Massachusetts. I am a bit uneasy about the accommodations. I am so capable in my own space here, and we will go from hotel to hotel without certain accessibility. Yet, I don't want to let fear of accessibility limit my traveling.

Road trip! Through the Bakken, which has slowed down considerably, then to Superior, then up through Canada to Ottawa and down into New York and Massachusetts. Gotta love our diverse, wonderful country (and Canada)! We'll go back through northern Ohio and Illinois and up to Minneapolis. Caroline has seen only MT, SD, WY, FL, VA, DC, NC--this will definitely broaden her perspective, if she can keep her eyes raised from a book or screen.

A PALS in Havre died four days ago. He was 52, and was diagnosed just within the last year. That leaves three of us that I know about, but we are all doing okay, considering.

Ruminations

Keeping my feet elevated to reduce swelling makes me think of those homes where people have plastic covers on their furniture to protect them. (Do people still do that, or did it die off in the '70s?) Elevating my feet does the trick, as medication is not indicated for  PALS as it dries us out. But as soon as I lower my chair, or get out of bed, my feet swell again.  Like the plastic covers, protection is achieved, but life is hampered by the means of protection.  I guess it all goes to the idea of security curtailing liberty. I have to find the happy medium.

I am sitting outside on a breezy Havre day, just watching the birds enjoy the garden as it is watered. Nice that something we do to benefit ourselves has a benefit for birds, too.  I don't think I can say that for the spraying we have done to make the lawn thrive.

I truly could live happily just sitting on my deck-ramp (dramp? reck?) watching the changes in the clouds, the trees, the garden. Then I feel bad that I am not helping with the housework, or yardwork. I can barely fold laundry now, though (who knew towels could be so heavy, or t-shirts so unwieldy?), and that was about the last task I could do. Feeling lazy is very unfamiliar, and quite distressing. Mostly, I think other family members think I am not contributing my fair share. I know they would demur if I asked them directly, so it's likely all in my own perception. Unfortunately, that it what a PALS is stuck with in the end: our perceptions.

Hillary Clinton is in the background doing her campaign ramp-up speech n Paul's computer. I was a Hillary supporter in 2008, and I support her now, although Bernie Sanders holds great appeal to my socialist heart. Still, he would be hard-pressed to win the general. Hillary will have a hard-enough time convincing a paternalistic society that a woman can lead our country, despite ample proof from other first world nations that women lead as well as or better than men. I am hopeful that she will become our first woman President, as she is clearly the best woman running, and her intelligence and ability are head and shoulders above her contenders.  I am appreciative of her (and Bernie's) willingness to take on the rigors of campaigning at an advanced age. I don't know many grandmothers/fathers who would put their country above their own desire to relax and enjoy a life well-lived. Even if ambition drives them, I say thank goodness.  Who else would do this tough business if they didn't have ambition and a desire to serve driving them?

Besides, I don't know that I will see another presidential election, so for me, it's now or never!!! Go, Hillary!!