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!
Wednesday, November 4, 2015
Wednesday, October 7, 2015
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.
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.
Saturday, October 3, 2015
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.
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.
Wednesday, August 12, 2015
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.
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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Thursday, June 18, 2015
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.
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.
Sunday, June 14, 2015
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!!
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!!
Thursday, May 7, 2015
Catching up
I've hit a game changer. Tuesday I turned my head while in bed trying to turn over, and the room spun. I turned back, and a few minutes later when I moved my head it happened again, only stronger. I thought I was going to faint or throw up. I managed to go to my Boys and Girls Club meeting, and work, and it seemed okay. Wednesday morning it was back with a vengeance, and I stayed home. Now every time I move my head too quickly, the vertigo and nausea overcome me.
I promised this blog would focus on joy, but I should have known there would be bad days. I just hate feeling dizzy and nauseous. I've been pretty good about all the other ALS stuff, I think, but this is different. I feel like I can't function.
I'm not driving now. I'm trying to remember when I made myself stop. I think it was just before we went to FL. Dolan and Paul have stepped up gallantly, and one day I ventured to roll home via sidewalks and roads. That was really quite easy and pleasant, although I wondered if I looked like an odd old lady doing it. Why do I worry how I appear to others?!
A local kid who Dolan suggested is redoing my back garden. Rototilling and everything. I am so eager to see it all redone.
These are "before" pictures. Lots of green, but it's mostly grass that took over the garden. Michael Bakke has it all dug up and cleared and it awaits the rototill on Saturday. I am so excited to see the finished project!
I will have to wait until Wednesday the 13th, though. Paul and I are heading to DC Saturday for an ALS conference and lobbying effort. We are a bit concerned about my traveling by plane with my vertigo, but I do want to see DC one more time.
Life is good, even with this new condition. I just have to adjust my thinking. It helps when I look at this view to remember what a wonderful life I have, and that I appreciate it even more now.
Florida
We have been here since Saturday the 4th. Ah, Florida. It's eye candy for a northern plains resident. Spring has not yet come to Havre, so all the lush vegetation is restful. The throngs of people, however, are exhausting, as is the varying accessibility.
I think this will be my last Florida vacation, but I am so glad we made the effort. Paul and the kids have been great. I just realized that I probably am incapable of traveling solo anymore.
Wow. Not be independent and travel solo?! I am so happy to have been able to do just that so often, and know that the ability was something I held dear. Like many things, it is no more. Still, it would have happened at some point in my life.
I think this will be my last Florida vacation, but I am so glad we made the effort. Paul and the kids have been great. I just realized that I probably am incapable of traveling solo anymore.
Wow. Not be independent and travel solo?! I am so happy to have been able to do just that so often, and know that the ability was something I held dear. Like many things, it is no more. Still, it would have happened at some point in my life.
Friday, March 13, 2015
Is this it?
I ask, because I had enough trouble driving today that I felt like driving might be beyond me soon. It's a tired day, so maybe that's influencing how I feel. Still, I don't want to wreck before I turn in my keys. I want to make the decision prior to that.
Wednesday, March 4, 2015
Ponderings
Update on JR14: unanimously passed the full Senate. Now for the House...
A person with ALS has been compared to a candle melting as the flame burns. That seems apt, as the light goes out at the end of a life, just as a candle sputters and dies. I was envisioning myself as a house, brightly lit, with the lights being turned off one by one. One light is walking, another using my hands, or being able to roll over in bed. Lights have gone out in many ways, but just as one can still function in a darkened house, I can still do so many things.
Work brings me joy, but getting there presents challenges. Today I simply do not have the physical or mental energy to pull myself through showering and dressing. Putting on underwear or socks can take 15 minutes for each, plus the time for the remainder of dressing. The idea of that is pretty daunting. I am thankful that I have an understanding supervisor in John.
I have not wanted to let ALS stop me from going to work, because the slope is way too slippery, and if go down it, I most likely will not come back up. I am not ready to call it quits yet!
Each day is joyful, and always will be, because of my family, the Earth, and my friends. Still, I want this blog to speak for me, and help people understand the challenges of dealing with ALS.
A person with ALS has been compared to a candle melting as the flame burns. That seems apt, as the light goes out at the end of a life, just as a candle sputters and dies. I was envisioning myself as a house, brightly lit, with the lights being turned off one by one. One light is walking, another using my hands, or being able to roll over in bed. Lights have gone out in many ways, but just as one can still function in a darkened house, I can still do so many things.
Work brings me joy, but getting there presents challenges. Today I simply do not have the physical or mental energy to pull myself through showering and dressing. Putting on underwear or socks can take 15 minutes for each, plus the time for the remainder of dressing. The idea of that is pretty daunting. I am thankful that I have an understanding supervisor in John.
I have not wanted to let ALS stop me from going to work, because the slope is way too slippery, and if go down it, I most likely will not come back up. I am not ready to call it quits yet!
Each day is joyful, and always will be, because of my family, the Earth, and my friends. Still, I want this blog to speak for me, and help people understand the challenges of dealing with ALS.
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