86,400 Seconds

A day like most occurred. Awake with Paul at 7, but in bed past noon. Always on my back, only able to raise and lower the mattress to raise and lower my legs and back. Then when I ask, Dolan comes to rescue me and get me to my chair. Then I'm in my chair until at some point I ask to be put back in bed again. After being in my chair a few hours today, I realized my feet were just in the exact position that Dolan placed them. Intellectually, I know that they don't move, but it still is a bit unsettling to see them lie so still. So very still.

Hey, but no big deal.

I watched the Ash Wednesday Mass from St. Peter's Basilica, and way too many Extant episodes. My takeaway from a cyborg future is that cool manufactured legs and arms aren't much good to an ALS person, as the brain is what needs tweaking.  My takeaway from the Mass is we Catholics love the pageantry of the Holy Days. This is what pulls me back to the Church, that and the community of our local parish.

In the long term, though, I can't envision this day after day. I could get a feeding tube, and then eventually a trache tube, and I could be stabilized in this chair and driven by others. Heck, I could live a long time that way. I could type with my eyes and speak through a computer. But I can't garden, or play the piano, or hold a newspaper, or read an actual book. Or hike, or sing, or do any of the active things I used to do. If I can only walk in my dreams, then I need to end this sooner than later.

So, I've determined not to have a feeding tube. I will eat solid foods and then liquid ones until I can't swallow anymore, then let malnutrition or starvation or whatever take its natural course. The kids and Paul and I have discussed it, and are prepared. With the help of hospice, the end should be relatively peaceful.  In the meantime, this cheers me each time I see it:

My dilemma

When I started this blog in 2013, newly diagnosed, I resolved to live each day joyfully. In doing that, I would be strong and face this disease with grace. Now, as my condition worsens day to day, and I feel weaker, I either have to admit I'm not strong, which is the core of my being, or not get the emotional and physical help I need desperately.

I don't want to prolong this existence. Having to ask for food, drink, range of motion exercises, to get out of bed, dressed, all the things that everyone else I know takes for granted, doesn't make me ask "why me?" but does raise the question "how long?"

I feel weak putting this dilemma in writing, but I have to put it out there so people understand I am no longer the strong person I purported to be. Definitely on the horns of my dilemma. Admit weakness and lose more of my sense of self than I already have, or not admit it and lose the help I need.

Obviously, once again in my life, pride goeth before a fall.

You'd think I would've figured it out by now!!

Post ALS Clinic

It's Monday morning, the start of my second week of retirement. Last Monday I went in to the office, though, so this feels like the real thing. In bed, reading, listening to NHPR because it has all the talk-news versus YPR that goes to music from 9-12.

Enjoyed meeting the doctors and other ALS Clinic staff at Billings Clinic. Unfortunately, I performed poorly on my respiratory tests. 65% in October; 44% in January. So their recommendations are a Trilogy for help breathing, and a PEG tube for supplemental nutrition. While those aren't considered big deals to get, I am facing the downhill slide. I truly can't envision being in this or worse condition for another year.

I watched Paul take down the Christmas tree yesterday. Will I see another? Of course, none of us know the answer to that question for ourselves. Thus, we just live each day, and try to be thankful for all we have been given. Still, that question was placed in front of me when I got my diagnosis, and it tends to be helpful to make me think deeply on events and activities that I experience, as I truly don't know when it will be the last time.

I can look at this new piece to help me feel happy.

The profusion of color is important to me given the weather and difficulty going outside. I love going outside, even now in the cold, but I am reluctant to ask for the time-consuming and trying effort of getting range of motion exercises done, getting me out of bed, fed, dressed, put in outerwear, shovel snow off my ramp, and enough blankets to keep me warm. All that has to be done by a family member, and my independent decisions about desired activities are completely reliant on them being willing and able to enact the needed preparation. So I more often stay in pajamas and read or watch Netflix.

That is still a pretty darned good life, though, when I think of how millions of people live in poverty, fear, hunger, pain, destruction or any of the other ills brought on by Man's inhumanity. I have ALS? Sure, it's a disease, and it changed my life completely, but people die from this and other causes and diseases all the time. Aneurysms, heart attacks, cancer...the list is long. As for me, I am always going to remind myself how lucky I truly am.

The New Year begins...

The year began with fireworks viewed through my glass door. Quite beautiful as they lit up the carved glass. I may have voted against fireworks inside the city limits as a council member, but I sure do love them! Very glad our neighbors do too!

We also went to a wedding on the 1st. So the new year started with love.💕
But the next day my wonderful boss lost his beloved (by all) wife to cancer. She was 57. Right around Christmas two other 50-something women died unexpectedly. Death comes in threes, I grew up hearing. Whereas the latter two did not get a chance to say goodbye, Kathy thankfully did. She leaves twin girls in Caroline's class, and two adult children. How can I ever feel my situation is unfair, when these women all are gone and leave loving families too. I just have to cherish my loved ones and prepare them for the inevitable.

Speaking of that, Paul and I talked about what level of invasive medical intervention I would want to  have. I'm ready to go anytime (there will always be something else to live for, after all). I don't want it to be too uncomfortable at the end, but I'd like to be aware. Are those things mutually exclusive?

So far, I use a wheelchair and have a catheter. That is the sum total of medical intervention. I am proud of that. Things may change when I go to the ALS clinic in Billings.

The Two-faced God, Janus

December 31st. Staying up til midnight was such a thrill when we were young, but as we age and stay up late for so many reasons, it seems contrived to stay up for one specific night. So here I am in bed at 11:19, but likely I will be awake at midnight regardless. Will I see the entry of another new year?

Worked for pay for the last time today, even though everyone else had already gone home. I had to clean out my things in any event, and send a last email as a means of exerting control past my retirement. Similar to wanting to plan my funeral details; exerting control from the grave!

So 2016 will dawn, and I will enter a fourth year of ALS. If I can hold on another 2-1/2 years I will see Caroline graduate. Much will be discovered at the ALS clinic a week from today. If my breathing isn't too compromised, perhaps I can make it to 2018. It doesn't really seem so far away when I think of it, but if I consider how I have deteriorated over this past year, and project ahead, then it doesn't seem like I'll make it through this coming year without resorting to invasive medical help.

Life is good, though. My brother and his family came to visit from California the last two days. (Who leaves California in late December to visit north central Montana?) we enjoyed chatting and had a great evening that stretched past midnight yesterday playing games. I really value the family I was born into, and the legacy of love and support our parents left us.

A joyful Christmas!

I am so fortunate to love and be loved.

Worked a couple of hours with Nuni and John at MSUN, I am going to miss being there so very much. John's wife has cancer, and is spending Christmas at Benefis hospital. My heart goes out to their whole family. Nuni, John, Amber and I are like a little family. The love and caring is always evident, and emanates from our wonderful leader John.

We had a quiet Christmas Eve, with a lovely Mass at 5, seeing many of our parish and city friends, the watched It's a Wonderful Life and Paul created a delicious feta shrimp over rice dinner. Dolan and Caroline were here with us, and Caroline and Paul made the overnight casserole. Then this morning we slept in til 10. Our gift opening focused on each individual opening their gift, which allows us all to enjoy each other's surprise and pleasure. Then a late brunch with mimosas, and stockings, with our favorite scratch tickets and Montana-themed cookie cutters.

Our lovely tree and bounty of gifts!

I had a bit of a meltdown last night because I was up too late (11:30 pm; out of bed since 9:30 am). Poor Paul; tough for the evening to end on a crying note. Once in bed, though, things settled down. I just have to face that I need much more horizontal time now.

If I see no other Christmas, I can remember this beautiful day. I leave you with a picture of Havre's Town Square Christmas tree.

Merry Christmas Eve!

Hoarfrost covers everything this beautiful Christmas Eve, my favorite day of the holiday season. Anticipation, one of the enlivening emotions!

We are sending out Christmas cards this year, but for the first time with printed messages and address labels. I always prided myself on personalizing each message to friends and family, but that is just beyond my ability now, even through typing. I can barely put the label on, or the card in the envelope. So I decided my blog entry today will be my Christmas message.

Our front yard tree dressed for Christmas!

Facebook means many people have followed our busy lives this past year, so I won't revisit the things we did. Suffice to say that we are doing as much as we can, and Paul and Dolan and Caroline are sharing this interesting journey with me while providing me with love, support, and most importantly, humor.

I am blessed. My family and my friends and my community give me strength to move forward. I wish all of you the happiest of Christmases and a peaceful and fulfilling New Year.

Christmastime is here...🎧

Christmas will be come and gone in less than a week. Advent is always thus: The waiting and anticipation soon gives way to the post-Christmas lull. But in the lull there is some peace. You can look back and remember the warmth of the season and the joy you shared with family and friends.

There I am, looking ahead again. I can see some corollaries with my condition. I do sometimes wait and anticipate what will eventually happen, but I hope the aftermath can be what I described above: Remembrance of good things past.

Today we slept in til 8:30 (that's sleeping in to us!), then had a nice hour or so reading the paper, Facebooking, and having #bestcoffeeever (Paul does make a fine cup of coffee for me!). Now Paul is doing the once-monthly recycling. I am envious; that was a truly favorite activity of mine for my entire active life. Really. I liked helping my dad with stacking newspapers for the Boy Scouts' paper drives back in Springfield, Virginia, in the late 60's. And I last took recycling when I was limping but still able to lift independently. Recycling is a big deal to me, as any who have had me annoy them about a tossed recyclable can attest! Still, like so many things, I cannot do that now. I am unable to adequately thank Paul for doing this in my stead. Although sometimes I think what small impact our household recycling has when I see garbage cans on our street bulging with recyclable materials, at the same time I know we have to be the change we seek.

I have been working this week, more hours than sick leave for the first week in a while. I want to be there, I have important work. We are assessing the transcripts of our student members, and looking at where we can help or celebrate their achievement. At the same time, I have chosen officially my last day: January 1st. I will start the new year filing for disability.

Disability. Official recognition from the Feds that I am unable to work. How can I keep going without that push to get out of bed and contribute my knowledge and spirit to the educational milieu? I have plenty of things to occupy me at home, but those things don't contribute to the greater good. I won't even have city council after Monday night, as the newly-elected will be sworn in, and I will leave my seat. (Well, figuratively, of course. I only leave my literal seat for transfers to bed or shower!) Still, I can't even voice an issue easily in council anymore. I had to have my fellow ward rep speak for me at the last meeting. Those who know me know I don't easily let ANYone speak for me!

Have a very merry Christmas! I will likely write again before next Friday, but I love saying Merry Christmas!

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.