What’s your fight?

[KarenNWendyn]

I’ve had friends advise me to keep on fighting “the good fight”. Realistically, I know I’m not going to win against ALS, so what’s the fight?

My initial fight was to hang in there playing the bassoon as long as I possibly could. Now that I’m no longer able to play the bassoon, my current fight is to find new purpose and new activities to keep me engaged and live the best life I can for as long as I can. I’m finding this surprisingly challenging as some days I wonder “what’s the point?”

Everyone has a different fight. Steve Gleason uses the slogan “No white flags” and his fight has been to lobby for legislation to help PALS and also help them financially. Others fight by participating in clinical trials.

So I’m curious and would like to hear from others. What’s your fight?

 

[Nikki J]

Mine is probably very obvious. I am FALS. My fight is to make sure I have done everything in my power so that I will be the last member of my family to die from this

I do this by study participation , donation and cajoling other FALS people into joining studies

This is a common goal for FALS I think

 

[Kristina1]

I think from the beginning my primary urge has been to survive long enough to see my kids grow up.

 

[dldugan]

Right now I am working on helping my wife learn things she will need to know. Today she learned how to put air in the tires. Turning all finances over to her and selecting an advisor.

 

[Clearwater AL]

Improvise, adapt and accept.

There will always be someone further along than you...try not to catch up.

 

[KimT]

When I started interviewing people for the ALS Awareness Paper I was still focused on my own survival. I was a single PALS with no children and no close family except my brother who is in his 80s. I had no idea what would become of me. Truthfully, I still don't.

Along the way I met and e-mailed two FALS. The more I dug, the more I found very young women PALS. They had little kids.

I'm no doctor and I'm no scientist but I know how to research and present. I've made it my mission to spread awareness. I went on the radio in the Summer of 2017. It was a show about religion and the host was a friend who happened to be an atheist. He asked me a question about church attendance and it was easy for me to discuss my faith as relates to ALS. I had listeners and the station invited me back. I make it a point to give that paper to every doctor, nurse, PT, OT, RT and friend I meet. It was distributed to a staff of 1,000 workers at Florida Health Care, many of them doctors.

So I guess my fight is for Nikki and Kristina and all the other people who are young or FALS. I don't want their kids to go through what we're going through.

I'm in a lot of pain and it's not just from ALS. Some nights I think it might be easier to swallow a bunch of Oxy, Valium, and Xanax but I won't do it.

I believe everyone has a purpose. I don't know why I was given this disease or why my progression is so painful and slow. I can't imagine being totally paralyzed and in so much pain so I won't predict the future. All I have is now. Maybe I have to be totally broken to really know who I am.

Plus I refuse to give up before I see that idiot in the white house out on his a$$ along with all his racist, homophobic, misogynist, greedy friends.

 

[GregK]

Realistically, I know I’m not going to win against ALS, so what’s the fight?

You "know" no such thing.

Is it possible this will kill us? Absolutely.
Is it likely? Yup, sadly.

But as long as we have a pulse, we have a chance. And that's a solid fact.

As to your question, my fight is simply to educate, protect, and encourage others in this journey.
I consider it amends for having been selfish and arrogant for my entire life.

I understand the anguish and despair that are our daily companions, I often hear that siren's call, too.
But don't hasten to the dirt nap, it"ll come when it's due.

 

[chally]

Great topic!

Early in dr said “ gonna be a tuff fight “ my partner who is a modern dancer her whole life says “ No, we gonna dance with it “

And so we have, improvising' surrendering,(to win ), acceptance, always moving when possible, including our whole family and community in all stages of this nightmare.

When the finish line comes up it comes up! We’re mostly ready, don’t need to bring it on any earlier.

And so we keep dancing with all we got with each other and who ever else wants to.

“ No white flag “

Love ya all
Chally

 

[Firefighter58]

You "know" no such thing.

Is it possible this will kill us? Absolutely.
Is it likely? Yup, sadly.

But as long as we have a pulse, we have a chance. And that's a solid fact.

As to your question, my fight is simply to educate, protect, and encourage others in this journey.
I consider it amends for having been selfish and arrogant for my entire life.

I understand the anguish and despair that are our daily companions, I often hear that siren's call, too.
But don't hasten to the dirt nap, it"ll come when it's due.

Greg I agree one hundred percent.

 

[Wilson2009]

Greg nailed it.

 

[azgirl]

my fight from day one was to do this with grace and dignity, which I feel accomplished.

I've been committed to participate in trials and my team has raised over
200,000,during the past five years for ALS causes. ,.

I have grown as a person and found peace and acceptance through meditation and Buddhist teachings,.I have forgiven, asked forgiveness, and found peace.,


I have purpose through spreading the word through my writings. I have purpose by being a role model to my caregivers who I've encouraged to start school, one is on her way to being a nurse. Another I helped get his citizenship.

I think the secret is finding a purpose to live. I'm ready to die, and will have few regrets. The past five years have been so hard, yet so rewarding. I will continue to live in the moment and find some joy in each day.

 

[KarenNWendyn]

I’m happy to see such a variety of responses. This is the kind of discussion I was hoping for.

CALS, please feel free to chime in too — re: your PALS’ fight as you understand it, and also your own.

 

[swalker]

I know this is not in the religion forum, but I can't answer the question in a meaningful way without starting off with the statement that I am a christian, and as such, I believe my purpose in life is to glorify God. I have been given certain talents and abilities (and am sorely lacking in others), and I feel compelled to use them in constructive ways.

Putting all that together means that for many years I have felt compelled to do the most with the abilities I have. Long before diagnosis, I had recognized that I would eventually die, and therefore every day is precious.

My fight is not over, it is just different now. I still have many abilities and I try to do the most I can with those. I hope to be an example to others. I serve on some non profit boards. I help friends and strangers with computer problems.

Despite the difficulties I face, I can still lead a joyful life. I get great joy out of helping others as well as being outside. Skiing in a biski is still amazing. Learning all that I can about wheelchairs and then using them to access trails is fantastic.

In doing these things (and many others), I interact with other people, offering a word of encouragement to those who seem to need it, offering advice to visitors to our wonderful resort town, and sharing my knowledge of Yellowstone's thermal features with interested, first-time visitors that may not have much knowledge about the wonders of that amazing place.

It is surprising how many new friends I have met since diagnosis. Every day offers new adventures and I relish diving in head first.

Steve

 

[Bestfriends14]

I love this, Karen. Thank you for starting this thread.

I'm a CALS and for my PALS, I'm not sure if it's a fight or a great way to keep him occupied, but he finds anyone in the world who has made a large contribution to raising awareness for ALS, and he sketches portraits of them and sends them this sketch.

As well, on the back of each sketch, he pastes a typewritten story about his journey with ALS and how much he appreciates them championing the cause for ALS awareness. In just the last 6 weeks, he's sent about 12 sketches all over the world. I think for him, that's his fight to keep going. He continues to search for these people world wide, via Google, and it helps to keep him busy since going on permanent disability.

 

[Emanol]

My father worked as a restaurant manager for a long time, even if he was never thrilled with the job. He came from a poor family in rural Spain and never really had the chance to study, not even primary school.

Since he retired due to the MND, he has begun to do things that he always wanted to try. He likes to take pictures and I bought him a new camera, an analog Leica, that he loves very much. He does not like digital cameras and enjoys the process of waiting until the pictures come. Additionally, he joined a group of creative writing -my father, who cannot write without making spelling mistakes, expressing himself through creative writing. He also likes to keeps two albums where he stores pictures and newspaper articles that mention me or my brother.

I find something oddly inspiring in how my father has craved, within the space left to him by the disease, a place for himself that he did not necessarily have before.

Thank you for your writings. It is always pleasant to read these things