"Dumbing" down

I spend my hours watching a variety of programs: Sopranos, Frazier, Zoo, Wayward Pines, Wings. Every once in a while I go on Facebook, Words with Friends, Candy Crush, Trivia Crack. And very rarely, I open a Nook or Kindle book. I read the Great Falls Tribune and Havre Daily News each day. And the lovely thing? Not one of those things require me to speak. I'm engaged but not not engaged. This makes me happy enough.

I did go outside yesterday for a while. It's been too hot lately for me, but yesterday was nice. My garden is still beautiful thanks to Sherry Kegel weeding all summer. Caroline and Amber helped out too. But sitting upright leads to phlegm clogs and anxiety and that is too frightening.

So watching my tv from a reclining position is best. Even this blog is hard to do because it requires me to look down at the keyboard.

Communication through speaking becomes harder and harder. It leads to frustration from everyone. So I retreat to the things that don't ask me to interact verbally.  Yet. I am working with a speech therapist, Kim, to learn the Tobii Dynavox so I can communicate somewhat easier.  Of course, when I  lose the use of my left hand, which may be sooner rather than later, that will be my only means of communication. I will have to say goodbye to my trusty iPad. I hope I don't have to say goodbye to Words with Friends.

Wrapping my head around this

As the days dwindle down, I keep asking myself how I will really feel when my time comes. How do I imagine death? Or what comes after? I don't really care if there's a Heaven, and I hope there's no Hell (swear there ain't no heaven and I pray there ain't no hell--thanks, Blood, Sweat and Tears!), and oblivion doesn't worry me, and reincarnation sounds interesting, so it's really just the process by which I'm fascinated. I was always a process person.

I want to go peacefully, but to do that morphine has to play a factor. And probably Atavan, an anti-anxiety med. Unless I'm just not anxious at the end. Which could happen. I can think myself through this, as I do when I'm alone and have a breathing issue. I just slow down and reposition my powerchair and try to control my breathing.  Maybe I can do the same thing, with morphine keeping the air hunger under control, as I pass. I want to be conscious when I do, if the two things aren't mutually exclusive.

If they do exclude each other, and I imagine they do, then I guess morphine-induced loss of consciousness is the way I'll go. I don't want Paul and the kids to see me gasping for breath at the end.

So, does the world cease to exist because I am no longer there to perceive it? Of course not, as people  die constantly and the world plugs along. But since I can only view it from my perspective, for all intents and purposes, it ends for me. Legacy is all we strive for: our children, our reputation, and some material things we leave behind. I think I'm comfortable with my legacy.

In praise of hospice caregivers

I need help with everything nowadays. And, I'm blessed to have Bear Paw Hospice in our lives since April. The best part is my visits twice a day from my CNA, Yolanda. She arrives each weekday at 8:30 and does range of motion (I liken it to massage for an ALS patient), and then cleans me and dresses me. Dolan is then called to lift me out of bed into my powerchair. Then she gets me food. She used to cook me eggs, but now all I ask for is boost. She leaves at 10:30.

She returns from 4-6, and is such a good companion. Some days she has to deal with my bm issues, but she takes care of things efficiently and never makes negative comments. In fact, she says the one word she doesn't want to hear from  me is "sorry."

Once a week the RN comes to check vitals and chat. Liz comes most, but Deb comes now and then. They are the ones who check meds and find out how healthy a terminal person can be. I always say, I'm the healthiest dying person I know!

Once a month we are visited by the social worker. Charlene just has heart to hearts with each family member, to ensure we all are okay emotionally.

So we are all blessed. Hospice allows my family to live their life while knowing I'm cared for professionally. Paul and Dolan can work and Caroline can still enjoy her teens. And when things get to the end game, they will help bring us to a peaceful close to this chapter.

All terminal diseases are hard. Thankfully, Bear Paw Hospice travels this arduous path with us.

Food memories

When I've had morphine, I tend not to have an appetite the next day. So earlier today I thought of food that was memorable to me. After 56 years, not too many things came to mind, actually.

Whataburger shared with Dad in Colonial Heights, Virginia.
Numerous Weiner schnitzel dinners while living in (West) Germany.
Cheese Shop sandwiches in Williamsburg, Virginia.
Dirty Deli/Paul's Deli sandwiches in Williamsburg.
Perfect tiramisu in San Diego.

My mom's steak and kidney pie, roast beef and Yorkshire pudding, cheese pasta in a pot.

I think I always had a relatively safe relationship with food. I ate to live, not lived to eat. Never a foodie. Never too skinny or too fat. I binged and purged once in a while, sure, but who didn't in the 70s and early 80s? But why am I using food deprivation as the end game? Looking to disappear?

I like this video, but it doesn't apply to me. I don't think it does, anyway.

Blessings

As difficult as my illness is, I am blessed by how many people who have written to me over the past 3 years telling me what I mean/t to them. What more can I ask, than to hear the good things people think about me before I die?

An update on the passing of my friend Chris. I googled her partner, Kip, and today found out they died the same day: April 6, 2015. So now I am left wondering if they were in an accident or if they did assisted suicide together (both had cancer). Or both happened to die on the same day for other reasons. I sent an email to Chris' sister at her work; I hope she responds. And I regret not sending Chris a letter saying what she meant to me.

Friendships have brought me such joy and dare I say validation over the span of my life. Yes, I feel the need to be loved and to express love. That elucidates the headstone inscription, doesn't it? I have a sense given to me by others over the years that wanting to be loved is a weakness. However, I always ascribed to the ideal to treat others as you want to be treated. And I need to be loved, and thank God, I have been well-loved. I only hope the people I have touched feel loved and well-treated by me.

I read somewhere that a taciturn New Englander was asked if he thought he was a "good" man. He said in reply: "You'll have to ask my neighbors."  We may all think we are good people, but it is in how we are perceived that we know for sure.

Two hawks

Dolan and I started our trip home by stopping in Opportunity to say goodbye. We got out because it was so beautiful. I did have a breathing issue, but when I lowered my chair back to help my breathing, I was treated to a blue sky seen through beautiful green boughs, and two hawks circling above. They were joined by swallows. I could revel in my view while dealing with my challenged lungs. Each day is truly joyful, even as I reach the end.

I am not eating or drinking much. I am contemplating having my catheter removed. Since I have to wear diapers all the time now, it seems redundant. And the big decision? When to cease intake of food and water, my chosen exit. I am beyond tired of just staying alive to watch tv (although I did begin The West Wing again!).

I've said my goodbyes, the family is prepared. Anytime now, God!!

Headstone in place!

We planned to at least see our headstone, realizing having it installed would take more time. So when Paul and I took a drive Tuesday morning to the cemetery office to see it, we were disappointed that it was all locked up. Still, Paul and I drove to the plot so he could show me the base he helped install. There, much to our surprise (and delight!) was the headstone placed perfectly on the base.  So here it is!

Yesterday was the big party, my fave picture was the one of Dolan and Rocky.

Family time in Opportunity

We are gathered at the Tuss compound in Opportunity, near Anaconda. It's a joint celebration of the birthdays of Liz Tuss (40), Caroline (16), and Peyton (16). Plus cornhole games, lots of family, bikes, volleyball, beer, pop, barbecue, birthday cake, and stories. I've been coming here for 28 years.

It's good to be with my extended family, but my health prevents me from enjoying much. We are at almost a mile elevation here, and the thin air does impact my breathing. Although I wear my biPAP more, it doesn't provide oxygen. It just gives my lungs a break. I must be about 33% capacity, so less oxygen makes it challenging.  Add the three or four smokers and charcoal and woodsmoke, and even outside it's tough.

Of course, a house built in 1930-something isn't accessible, so we depend heavily on good weather or I have to go in the carport or back to the motel. Yesterday it rained off and on, so I was in the motel. It only makes me sad that Paul or one of the kids has to stay with me and can't interact with the family. I am used to being alone at home, but here is hard.

Still, I'm glad I'm here. Family is all-important to me, and always has been.

Family at Philipsburg (above) and Tuss cousins at Opportunity (below)

Almost forgot! 3 years today!

Three years ago today I was diagnosed with ALS. Back then I walked with a limp. Today I am down to using slightly curled left fingers to type, and I can no longer speak clearly. I can't move the rest of my body except to turn my head.

I read of other PALS who will do anything it takes to stay alive. That's not for me, though. To each their own, but my idea of living involves no tubes and lots of physical activity. If that's not possible, I'd rather fade to black.

Watching the. Democratic Convention

I am watching the convention app, which means I don't have to listen to talking heads interrupting. Concurrently, I am dealing with a phlegm clog. A little morphine helps me relax my trachea and forget about it. And then I can revel in Michelle Obama and Elizabeth Warren. And marvel at the diversity of our convention-goers, especially in comparison to the Republican convention. We look like America. The. Beautiful.

My day starts at 8:30 with a hospice visit from Yolanda, my CNA. I am blessed to have her. She does great ROM. It almost feels like a massage. For my first and only official caregiver, I have lucked out.

Now Bernie Sanders takes the stage. Is he ever going to mention Hillary? Oh good, he did. I hope his followers act like we, Hillary supporters in 2008, did and vote for our party's candidate in November.

Tomorrow is my 56th birthday. I am fortunate to reach that milestone, definitely. So many millions don't. Still, each night I pray "my soul to take," and I mean it quite literally. God can take me anytime now. Once I lose my voice totally (today was pretty bad), and my left hand fingers give up, I have lost my methods of communication. The frustration that engenders in everyone, not least of all me, makes me want to give up the effort. So given my previous talks with my nuclear family, they are prepared at any time to say goodbye.

That doesn't mean each day doesn't have its joy. It just means I am ready to let go. I am at peace with what is happening.

Garden gifts that last

Watching Paul move the sprinkler, I thought how happy he will stay: caring for the yard and garden that was planted for me, but will give him peace in the coming years. What better way to remember me than the beauty of this backyard?

I want to be remembered, not mourned (at least, not for long!). I hope I have done enough good in my life to outweigh any bad. But I don't relish thinking any of my family or friends should grieve too long. If I don't grieve now, please know I don't want your hearts to be heavy then.

My ever-shrinking world

We used to talk about the small worlds of our aging parents, but now I can see from where the lessening interest arises. As I look toward the end, I start to think about what's really important to me. But I also retreat as my voice fades. Watching Netflix requires nothing from me. No response, inattention, sometimes sleepiness and infrequent napping. Bad interpersonal behavior, but the tv doesn't mind. And except that I think I should be outside in good weather, even though I would be a brown, withered prune (more so than I am) if I were to spend more time out in the sun when I am immobile, I could watch shows for hours, and indeed do.

So where is my world? I still read the online newspaper daily, so I try to keep up to date. I revel in re-watching Downton Abbey, and have found Jane the Virgin immensely entertaining. Even Frazier and Wings stand the test of time and still make me laugh.

And I reread old correspondence. I did read the William and Mary alumni magazine cover to cover this month, and was saddened to see one of my favorite correspondents, Chris Cragg, had died in April 2015. I had to read it several times to get it to sink in. I spent an hour trying to google her but with no luck. How can a friend be dead and I had and have no knowledge of how or why? She was just two years older than me.

Dead is dead. ALS is no more "horrific" (I hate that word!) than any other disease (or other cause) that leads to death. I am going to handle this with the help of hospice and family and friends.

No whining!!

Calendars

I have been working on my calendar for the upcoming months for events I know are going to happen, including hospice visits. I got to Christmas, and thought how last year I thought would be my last celebration of Christmas. Yet, here I am planning ahead.

 Just shows that this is not truly in my hands. I do not see myself taking my self out, anyway. So, short of a systemic failure, I am probably going to be here for a while longer. That is a good thing, all in all, although it seems like traveling is going to need to be limited due to uncomfortable beds and showers in hotels. I love my home though, so not traveling is not deprivation to me.

 So calendars are my friends. Instead of dreading the future, I look forward to each thing I get to do with family and friends. If I die in the meantime, I can die happy.

 As a well-spent day brings happy sleep, so a life well-spent brings a happy death. Leonardo Da Vinci

Sit on my headstone, please!

Paul and I have been working with his brother, Rick, the cemetery owner, to get a headstone done in Florida in time to be installed in the Anaconda cemetery when we're there in August. I figure, I want to see what everyone will see after I'm gone.

I'm reading Terkel's Will the Circle be Unbroken. One person said he wanted a bench instead of a headstone for his grave, so people can rest in a nice cemetery. Well, we just ordered a big-ass headstone. But I will tell you now, you can plop down on my headstone if it seems comfortable to do so. I just have always had a fascination with cemeteries, and headstones tell stories. But I am a hostess too, and will be that beyond death. So come visit me, and sit on my headstone if you want!

On another note (pun intended), we welcomed the Blue Pony marching band home from their triumphant participation in the National Independence Day parade in Washington, D.C.

A mighty wind

We were lucky to spend the weekend in Glacier National Park with friends. The weather was very fickle: sun, clouds, wind, rain. No snow, but we wouldn't have been surprised.  In any weather, GNP is beautiful, especially the east side. The majesty of the mountains is jaw-droppingly gorgeous, and had I died right there I would have died content.

But here I remain. I don't want to eat, I can't carry my end of a conversation, but I can read old correspondence and remember old friends. One friend from Missoula had a severe stroke 9 years ago. He was a kind soul, and I miss him. So my theory that I can't feel sorry for myself as everyone has something proves unhappily true once more.

My title refers to the gale force winds that ripped through East Glacier Saturday night. Wind like that is elemental. It's as though the mountains themselves are creating each powerful gust to blow humanity off earth's surface.

Here are picture Paul took, we saw a moose and several bears! But the best thing we saw was friends old and new. Ed, Sue, George, Julie, Galen, Maryann, Pam, Mark, Rog, Katie, and Sterling.

Blessings rain down like cottonwood blossoms

Glorious weather yesterday and today! In the 80s and clear with a slight cooling breeze from the west.

Yesterday the fountain giggled merrily, and Amber, Caroline and Dolan weeded the east side of the upper garden. Paul and Russ installed a ramp onto the back deck. It has increased my world. Yay!

Diane and Art drove up from Helena yesterday, and just left after a lovely brunch on the deck. They also went with us to Dolan's play Eqivocation. This morning the family went to Mass. I opted out as I needed more rest. Didn't sleep til midnight because the play ran three hours. Worth every moment, but I needed recovery time.

I am surrounded by love. I am so blessed.

Garden gnomes!

On my new ramp!

Memorial Day

Saturday morning dawned bright and sun-filled. We've had days of rain off and on, and more is forecast, but we are reveling in the beauty of this day.

Our dear friends Sherry, Greg, Lori, and Delmer, along with Paul, are laying sod. They smartly suggested lessening the square footage of the garden since I no longer manage it. So we have a beautiful upper garden, a lawn-to-be, and a lower garden. I would not have had this had Sherry and Lori not stepped up. I am so blessed by friends old and new!

I am slightly blue...I would have been up at 6 on a day like this, working in the yard, cleaning the garage, doing the laundry. I loved my simple chores, knowing I could bounce from one to another as I pleased. To just sit here and watch others work is hard. I don't stay blue long, though; how can one, when surrounded by love?

 

To be or not to be...a juror

I received a notice of jury service. With it comes a questionnaire as to qualifications an an affidavit of excusal. So the question is, do I do my civic duty? I've always wanted to serve as a juror, and was dismissive of those who didn't want to or avoided service. I was glad when the State made having a driver's license the basis for jury duty versus voter registration. So now, when I need to fill out one form or the other, why should I hesitate?

Well, the period of time I'm signing up for runs July 1, 2016-June 30, 2017.  I doubt I'll still be around next year. Also, I have to have someone else fill out the form, mail it, drive me to any jury call. Then, if I am selected, I can listen and serve well. If I have to discuss the case with fellow jurors, I will be hard-pressed to get my words out. So do I fill out the affidavit?

When do I truly face my inability to function in certain circumstances?

So I guess for all concerned I should ask for an excusal.

One more PALS lost

Patty Blake passed away yesterday morning. She was a grandmother in her mid-60s. The good news is she died peacefully in her sleep. My thoughts are with her family and friends. I know she is at peace now. Her unshakeable faith was her rock. Her blog https://pattysoksofar.com always brought me to a better place in my thinking.

I have been grilling the hospice workers about how people die. The variation is tremendous. The difficulty is suppressing pain and anxiety enough to allow peaceful passing. I am so curious about the whole dying process. True morbid curiosity!!

The trees reflected in my electric fireplace screen are fully leafed out now. My friends have my garden, flower pots, and window box planted. I am surrounded by signs of life even while curious about death. And I have this lovely orchid to enjoy:

Thank you, Jade!

On Tuesday evening we attended Caroline's choir concert, the Rose Concert, where the seniors get saluted and give their parents or special relations roses. I started to cry, thinking that I won't be there when Caroline is a senior. Paul held my hand throughout, and I rationally know our mother-daughter bond doesn't need a public demonstration. Still, I love the ceremony. So afterward, what did my sweet, talented daughter do? She presented me with a rose! That took such thought and consideration. Thank you, Caroline!

Sidewalks, Trees, and Finitude

I went on an adventure yesterday. After dropping Dolan at play rehearsal, and leaving the van (which I haven't driven in over a year), I set off alone from MSU-Northern to go downtown. Downtown Havre was holding an outdoor event, Discover Downtown, and I wanted to see it. So off I went.

I love Havre, but it's not the most accessible place. Many corners don't have curb cuts, necessitating detours to the street or alley adjacent. Needless to say, that allows me to see more, and feel more daring.

Although the sidewalks are heaved and cracked, one only has to look at the abundant trees to discern the cause of the damage. That, and the subsequent pernicious freeze-thaw that rips up sidewalks and roads in chinook country. Would I like smooth, wide sidewalks? Sure. However, not at the cost of being deprived of trees. If I look at my experience with ALS in that light, I can also appreciate what I receive with the suffering: bountiful friendships and an appreciation for the beauty around me.

I ended my independent trek with Mass at St. Jude's. People seemed surprised and concerned that I was alone. I am confident that as long as I am seat-belted in my chair, I can go anywhere my chair can go by myself. If I have to give that up, I will truly mourn.

I am listening to Atul Gawande's Being Mortal.  I think often of our failure to recognize that we all die, that no one life is more valuable than another, and that saying we battle a disease makes those of us who accept our circumstance seem weak. I am not saying people who seek treatment or follow regimens of diet or exercise are wrong, just that those of us who choose not to do so aren't giving up. 

I choose to reflect on my past, to read old correspondence, to watch Netflix, and to spend time outside enjoying the yard. When friends come over, I enjoy them immensely. As talking grows more difficult, though, being alone is okay.  Thank goodness I was always comfortable alone.

We are all given something to compensate for what we have lost. Sherman Alexie 

Late April snow!

Yesterday as Paul and I drove back from Missoula to Havre, I thought about how beautiful Montana is in the spring,especially after a drenching rain. I was grateful to see another spring, hoped to see summer and fall, but felt another winter would be too hard. I countered that with thinking seeing another beautiful snowfall would be nice. Maybe I could in October or early November.

Well, God must've been listening. We've had a long, beautiful snow since last night but the soil is too warm to allow much accumulation. So it's darn near perfect. A snowfall for beauty, moisture for the fields and gardens. Thank you!

The photo is by Marian Miller of her Havre yard.

I've spent the better part of today chronologically rereading correspondence from two college friends, Helen Hurley and Melanie Cecil. Such a joy to go back in time. I have two thoughts: one, I have been blessed with such good friendships, and two, we have lost correspondence as a form of communication and a resource for historians. Sure, I am limited in my ability to write, so thankfully we have texting, email, FB, and more. Still, what will historians of the future do without back and forth written records?

I have many more letters to read. I saved all correspondence. I will either return them to their originator, or recycle or burn them. This is not to thwart historians; I just can't imagine any interest in them from anyone else.

I've had such a good life all in all.

Some days are diamonds...

"You draw a line in the sand with this kind of a disease, a line you feel you won't cross. Then something changes, and the line moves. Something happens and you want to live even longer. On the other hand, some changes bring the line closer, forcing you to contemplate that which you do not want to see. The end of my life is a moving target, just at a closer range than most, and with a higher degree of certainty. Today that line looks distant. Yesterday it looked a lot closer. Pillar to post."
Richard McBride: Richard is Living with ALS

Well said, Richard! What I especially like about ALS bloggers is we often give words to others' feelings...we articulate what they're thinking. At least, I know they (Vivian Connell, Richard, Sarah Coglianese , Shelly Austin Hoover, Patty Blake, Rick Raker and others) speak for me. I can only hope I speak for or give comfort to others with ALS, or those who are going through hard times with other issues.

I attended a retirement reception for five MSU-Northern staff, including myself, yesterday. Also retiring was my beloved supervisor John Donaldson. He lost his wife, Kathy, to cancer earlier this year. So between his speech and mine (delivered admirably by Dolan in my stead), it was pretty tearful. We both love Northern so much. We received beautiful clocks as thanks from Northern, but the best gift was the opportunity to work with students.

My retirement clock

The SSS Gang plus Dolan and LV

On Heaven and Hell

Paul attended a funeral yesterday. We discussed Heaven and Hell afterward and how atheists deal with the life-after-death questions.

We are not atheists, if only because of our life-long participation in the Catholic Church. I know I have questioned the Church at different periods in my life, but I always believe there is a greater power than us. I have come to a place of peace with my relationship with the Church.

With that said, I am unsure what awaits me sooner rather than later. Paul and I discussed whether there actually could be a Hell. As he said, it's hard to believe God would throw us down to burn in a fiery furnace for eternity. And if God would, how does He chose? I cannot believe I am so pure that I get a free pass to Heaven, but even so, a direct flight to Hell seems a bit unfair. If Hell exists, then I assume some really bad players are in there: Pol Pot, Stalin, Hitler, Himmler....people who chose to do evil things. Do I belong there alongside them? I think not! Are there circles of Hell, like Dante postulated? Then you could envision sorting.

So then, if not Hell, Heaven. Okay, that's a pleasant option. I really can't see it, though, not as I can see reincarnation, or simply nothingness. Uncounted billions of humans have tread this path before me. As an environmentalist, I cannot imagine God not recycling souls through reincarnation. That seems most likely. Nothingness doesn't scare me, but it's kind of sad nonetheless. If we spend time trying to determine the meaning of life, to simply cease to exist seems a cruel trick.

So Paul and I think Heaven, or someplace, exists where all of us go. Even the bad players go there. It's like my former pastor said: No sin is too great for God to forgive. That should comfort us all.

Theatrics

I have been fortunate to enjoy several good plays put on locally in the last month. We started with Mary Poppins, in which Caroline was a bank clerk, tin soldier, manic daughter of Mrs. Cory, and a chimney sweep. Then we were treated to The Crucible. Caroline played Mary Warren. One felt transported to 17th-century Massachusetts. These high school kids were amazing!! Truly, they did a superb job bring a difficult subject to the stage.

To complete the trifecta, last night we saw To Kill a Mockingbird. Wow. The three children actors carried the show, and were amazing. Yet, there were no weak characters. Perhaps my expectations were lowered: I had inside info about who was prepared or not from Dolan, who played Bob Ewell, the mean racist father who accused Tom Robinson of rape. All the cast was prepared, had their lines, and stayed in character. That is the least one can want: They went far above that minimum. I was so impressed, and if I could jump up, would give them a standing ovation.

,

What incredible talent we have in our two-county area. I would have just said in our small city of less than 10,000, but some actors were from the next county.

So, that's three items from my list posted earlier. Those plays, and seeing spring rise on the high plains, give me pleasure that I can relive in my thoughts and dreams (last night I dreamed about TKaM!). No matter when I leave, I have such grand memories.

My life goes on in endless song, above Earth's lamentation. Opening lines to a favorite hymn. Really, how can I keep from singing? What a good life I have been given.

Monday morning

A nice weekend has slipped by. Monday has dawned cloudy. Paul is at work. Caroline is in Helena for Closeup. I just heard Dolan stirring at 9:30. I've listened to NPR news, played Words with Friends, Trivia Crack, and Candy Crush. (My achievement? Passing a level I was stuck on for months.) Now I'm listening to classical music on Yellowstone Public Radio.

On NPR, they had a segment on standing desks, and saying the science wasn't conclusive that these desks were important, but that sitting no longer than 45 minutes duration was the key to health. Really. And here I have been lying in the same position since 9:45 last night. 12 hours. Hopefully soon to get ROM and out of bed to sit in my powerchair for the day. So clearly I am on a unhealthy path.

I could have gone to Helena for Youth of the Year events today. I just didn't have the energy to plan ahead for a long day of meetings and an evening at the Governor's residence. I used my connection with Steve and Lisa to secure the location and Lisa as a judge, but a long day away from home intimidates me now. Still, I am a bit sad at not making the effort, as this will be the last time for me.

I think that is my hardest challenge: deciding what I really don't have energy for when I know I will not likely get another opportunity to do something. The annual Mansfield-Metcalf dinner this past Saturday was another event I opted out of due to not wanting to be at a dinner I couldn't eat and where people would have talked to me a lot and expected me to converse with them.

But this means I am isolating myself. There is no going back on this, as my energy will decrease as the disease progresses.

What if I could just get up and go to work? That would be such a treat. Even on a gray Monday morning.

Listing

What I want to live to see

Caroline go to college. Fall 2018. 30 months from now.

Caroline Rose Concert and graduation. 2018 late May. 27 months from now.

Hillary Clinton inauguration?! January 2017. 11 months.

Election. November 2016. 9 months.

Caroline's sweet 16. August 10, 2016. 5-1/2 months.

James Taylor in Bozeman July 2016. 5 months.

Caroline and the Blue a Pony band march in DC. July 4 2016. 4 months.

Primary. June 2016. 3 months.

Dolan in To Kill a Mockingbird. April 2016. 6 weeks.

Caroline in The Crucible. April 2016. 6 weeks.

Caroline in Mary Poppins. March 2016. This week.

I started this list March 1, 2016, to explain the time frame. I have seen Caroline 3 times in Mary Poppins! They closed last night. However, if I jump to the top of the list, I really don't think I will see those things happen. I have made health care decisions that will likely preclude me from seeing more than 2016. I'm okay with that, mind you. This isn't a sad post.

Actually, in envisioning these events, I can almost pre-live them. I have a healthy imagination, and since I have experienced some of the events before with Dolan, or others, I have a good sense of the sequence. I just plug in different faces in my imagined scenarios. 

I have also made lists of my finances for Paul, what I think needs to be done with my things and the house (repairing my powerchair damage!) when I'm gone, songs I want at my vigil...exerting control from the grave, so to say. I don't let go easily, but I'm learning to let go while holding on.

The first day of spring today! If I live to see my garden in full and glorious bloom, I will be content.

 I don't know when the end will come, but I still am willing to buy green bananas. (Thanks to Woody Woodwick for that joke!)

My Life as a Cat

I thought today how much my existence is like a cat's. I sleep, eat, poop, sleep. I follow the sun and like to nap with it full on my face. I contribute very little and demand people wait on me. True cat existence.

Wait, though. I'm not a cat. I don't ignore things and people I don't want to pay attention to. I am unable to ignore the tension between father and son, or the path Dolan is traveling. I don't have the energy to do much about it, and yet it hangs over me and seeps through my system and causes discomfort. If I could stand out in the rain and let it wash over me after a while it would have the same effect. How do people realize when enough is enough?

The days go by slowly yet I am always surprised by the setting sun. What was my day filled with?

Reading. Currently Sherman Alexie. The Lone Ranger and Tonto Fistfight in Heaven. While reading the stories I can understand what a fortunate existence I have, and grieve for the lost lives and culture. In some way it makes dying easier. My life is worth no more or less than countless Indians who have passed and will pass before I do. Perspective.

Listening. I ask Alexa to play NHPR and hear all the news. Very little of it is good, although there might be a cessation of bombing in Syria. That would be a blessing for all concerned. A cessation of violence would be better, but violence is never-ending, as was shown by the Kalamazoo Uber driver yesterday. Then there is the presidential campaign. When the Pope gets involved, you know it's over the top crazy. People have the right to support whomever, but Trump would make a positively repellent president. There are less-objectionable candidates on the Republican side, but none can gain traction against a demagogue like Trump. We all need to read All the Kings Men again. On our side, we have two similar yet different. I will vote my gender, and be justified in doing so. Even if Hillary is not as progressive as Bernie, it is time for a woman. We are the majority, after all.

Eating. Not very much, not very often. Yesterday, slices of ring Bologna and cranberry apple juice at noon, rigatoni at 7 with a small glass of beer. I don't always feel hungry as I can never eat enough to stretch my stomach. Where was this when I was healthy, I ask?! Dang. My last weight was 140, down from 165 (after I got slow from ALS and gained 15). The doctors say I must keep calories going in. I know I should, but I still can't be sad about losing weight. Maybe when I'm under 125, then I'll worry.

Viewing. Too much, too often. Yet losing myself in Netflix, or streaming Downton Abbey or other current shows, allows me to forget for a while my situation. I do find myself envying the ability of the actors to move freely, although fortunately in the same instant I can think of those who are far worse handicapped than me, or who are that way from birth. I am so very fortunate to have had 53 great healthy years.

Napping. Just like Rosie, I spend more and more time napping. I don't mind, really, although. I hate to waste daylight.

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.