What’s your fight?

[blitzc]

Karen, thank you for your insightful wisdom in finding a way to get us all thinking, talking and sharing! You are a gem. This is an awesome topic.

I attended my first ALS support meeting two weeks ago and brought up this very similar topic. I said that I still need to discover my "NEXT". I gave up running years ago due to knee surgery and my next became walking. I set aside scrapbooking because I was so busy with community volunteering and professional obligations helping new teachers. These activities were my next.

I can no longer play handbells in church...what is NEXT?
I can no longer work to plant, harvest, and preserve my vegetable garden...what is NEXT?
I take only short walks less than a half mile for now but not my usual 5-6 mile ones of reflection, meditation and companionship....what is NEXT?
I have taught elementary students for 32 years and am barely getting throught my final year...what is my "NEXT?

I"m not whining here, just sharing my thoughts. I know there is more for me. I just haven't figured it out yet. It obviously won't be something that requires my hands or legs.
ALS awareness? Political action?

What is my "NEXT"?
Cathy

 

[Jlynn]

I'm just here to say what a wonderful thread this is. It has moved me to to tears hearing all of the amazing reaponses to Karen's question. You all are my heroes. As hard as it is I hope you all keep fighting. I'm rooting for every one of you. A HUGE holiday hug to all of you!

 

[KarenNWendyn]

I’m glad people are enjoying this discussion. It is pleasing to me to have found an evocative topic relevant to myself as well as others. It helps me process my own journey, and hopefully helps others similarly.

Perhaps one of my fights is to keep seeking the important questions.

 

[wishmobbing]

Great thread!
If my PALS was a fighter it was one that knew how to roll with the punches and when to go down in style before the fight turned into a bloody carnage.
So we're kinda with Chally on this one.
I picked a couple fights with health care and bureaucracy along the way, nothing noble, just trying to stay afloat.

 

[KimT]

Karen,

Thank you for this thread. With each new post I find myself with more inspiration. I've cried my way through some of them and cheered through others. Every post made me realize how powerful we are together, despite our weakness.

 

[Katalin]

Karen, great thread. My aim, my work, is to learn everything I can (from the forum, from other CALS, from the ALS society, the clinic, the internet) and figure out the health care system, and our various social agencies, so I get the maximum good for my mother. My true fight is with the system though, that sometimes wants to shortchange her (in my opinion), and I will always fight to be her advocate, and eventually, I'll fight to make sure we give her the best and most fulfilling life she can have at every stage of this, whatever time is gifted to her.

Kathy

 

[ReginaS]

Thanks for this thread and all the ideas. I like every single one of them.
My partner used to play the French horn. Unfortunately he had to give it up - the orchestra, the band, the group he played in. It was a big change and the loss of an activity he thoroughly enjoyed.

There are a few things that keep us going. At least so far.

When we moved into the 1-level home a number his salt water fish died even though he had hired a professional to move of the tanks. Recently we bought a few new fish to add a bit more life to the tanks.

There is one cinnamon clown fish (it survived the move) that has bonded w. a soft choral since the move and most of the time the clown fish is in it, snuggling and rubbing against the fingers of the choral as if he is bathing in it. You cannot get tired watching it!
There is a rather old predatory snail that cuts open clams and eats them - when it gets one... only from time to time.
The small new fish are eating well and adjusting to their new environment. We are still hoping that the 2 new and rather small ocellaris clown fish (look like 'Nemo') will bond and be a pair but so far it does not look like it... those 2 don't seem to like each other too much. We won't give up our hopes yet.
The most fun these days is watching a beautiful red and white cleaner shrimp move through the tank and try and catch some of the food. Every feeding we break out in laughter at this shrimp and the acrobatics it performs to get to the food.

My partner is teaching me how to take care of the fish and the tanks as he can no longer do it. He 'supervises' and I do the water changes and topping up, cleaning filters or skimmers. Then I feed the fish and we watch how the food disappears.

When I have to go downstairs to the basement we are using an older phone w. camera software that plays back on his tablet where I am and what I am looking at. When I look for some parts that we need for the tanks and he sees on his tablet upstairs and can direct me to find the right stuff.

We also put up a (so far !!!) squirrel proof bird feeder that goes up from the porch on a repurposed a mail box post so that we can see the birds from the dining room table and from the living room. It's always fun to watch the birds come and get more seeds.

As a next project I am looking for a wall mountable thin digital image display - maybe a smaller tv (?) so that we can look at the images that we took on our many hikes. We have a small frame but a bigger one on the wall would be nice.

We are finding activities where you don't have to move too much or do too much.

Ina

 

[Atsugi]

Great thread, thx, Karen.

My fight/goal (as a CALS) were only these two:

1. Ensure my PALS had the least difficulties possible during her remaining life--little or no fear, no pain, no discomfort. (Actually, as little as possible.)

2. Ensure our kids and I--survivors--came out the other end in the best shape possible.

My watchword was this: ALS will take one life, but I will ensure it does not destroy the lives of our children as well.

I'm happy to claim victory on both fights.

 

[preacherman]

I have always been a very busy person, usually too busy.
I have carried two different lives around with usually enough energy for only one of them so, depending on which I chose at any given time, one would take away from the other.

After the military, by trade I was usually a floor covering installer (while physically able) with pauses between jobs working as a mechanic or sometimes an over the road truck driver.
My sideline was operating a print shop / publishing business.

On the private side my two missions were my family and serving the Lord and spreading His Word.

Over the years I found that while serving the working side and providing the physical needs of life the private side suffered greatly.

It was always my thought, hope and prayer that I would find a means of providing for the physical needs of my family while having the time to nurture my families emotional and spiritual needs and the time to dedicate to serving the Lord.

Fast forward to today... Va has been great.
Money is no longer an issue I have to contend with.
I am still very mobile and capable, though day by day I find that slipping.

And where do my priorities lie?
I am still busy.
Still too busy to tend to my families emotional and spiritual needs.
Still too busy to serve the Lord with all my heart.

Where is my fight?
It is with myself.
I now have the time to do the things my wife and I want to do and I am still able to do most of them.
I now have the time to serve the Lord; to write my books; to produce the many tracts I have written.
Seems like all I have is time and yet I am busy all day and I accomplish nothing.
As my abilities slip slowly away I find ways, strength and energy to continue to do the things that have always occupied my time, yet I have no energy left for the truly important things in life.

My fight is to establish my priorities and to faithfully stick to what is truly important and let all the rubbish that keeps me busy go while there is still time to do so.

 

[ARCG]

When we first found out years ago, I used to listen to 'Fight Song' in the car, I was overwhelmed, but would have been more so if I had realized all the obstacles I would face with insurance companies, medical providers, equipment providers and the regular issues in everyday life while trying to provide the best possible quality of life for my pals.

The fight is trying to get through everyday being the caregiver my husband deserves as I run an obstacle course being attacked from all sides.

The fight is remembering to be grateful for the quality of life we have achieved against impossible odds and another Christmas together.