Positives

[rmstudier]

ALS is a struggle and is depressing. As I continue to lose function, it's easy to dwell on the negative aspects of this disease. I have discovered, however, there are a couple of positives for me.

I look out the window this morning in Wisconsin and see the large gently falling snowflakes with my pine trees in the backdrop. This is beauty in nature that I can now savor instead of worrying about things like driving on slippery roads or cleaning up after the snow storm.

I notice the beauty in nature all the more because I now spend so much idle time caused by my immobility. I know the birds that frequent my backyard....bluejay, cardinals, yellow finches, a crow and many others. My backyard is also blessed with an integrated squirrel community of grey, black and white squirrels. Until recently I did not know that white squirrels existed. I've watched them prepare for winter by acrobatically snatching crab apples from my tree and hiding them in places only they will remember.

As my physical abilities deteriorate, I am more and more dependent on other people for even the most basic of needs. I am a control freak who finds this experience humbling. Maybe this is a life lesson that I needed.

Can anyone relate?

 

[Ladyinn]

I certainly relate! I too was/am a control freak and a person who juggled many projects at one time. Now I am almost totally dependent on others and am learning a lot!

Slowing down is not all bad. I am lucky to have a partner who can not only shower me but can make me laugh while we struggle together to get the job done.

We are currently on a road trip and I am taking pleasure in the sites and sounds around us. No worries about driving and dodging cars -- my job is to sit back and take in the sights; suggesting spots to stop for photos and to capture the moment. We have been on the road for more than 10 days, covered 2100 miles and seen such wonders that I had seen before but never truly studied.

I am blessed with ALS.

 

[abbas child]

ALS is a struggle and is depressing. As I continue to lose function, it's easy to dwell on the negative aspects of this disease. I have discovered, however, there are a couple of positives for me.

I notice the beauty in nature all the more because I now spend so much idle time caused by my immobility. I know the birds that frequent my backyard...

As my physical abilities deteriorate, I am more and more dependent on other people for even the most basic of needs. I am a control freak who finds this experience humbling. Maybe this is a life lesson that I needed.

Can anyone relate?

Yes...sure can, Randy. Because I was already at home and walked the trails nearly daily, the wonders of nature had been growing steadily, for years. Now the birds aren't fed by me, but the natural food from berries (and acorns for squirrels) are still all around, so watching their antics is fun. The other day a squirrel sitting in a pot on the deck entertained me with it's non-stop talk. That is all a plus. Yes, it's a lot nicer to be out there in the real deal, but it's still a blessing to be able to sit and watch.

I have to think about this "control freak" phrase, Randy. I seriously wonder in terms of this disease if anyone is NOT a control freak. It takes a determination not to allow the wallowing in the losses, and to try hard to focus on finding ways to see the funny and the ridiculous. Some of which I would love to share, but not in public... but try a hoyer lift sometime with only your wife. Practice using various lengths of straps. It is hilarious. You have got to laugh at yourself for this to work. Oh--and your wife cannot laugh first, or it won't work...

I know if there is pain (and often there is), or lack of sleep, or an unkind caregiver (or no caregiver, shudder), laughter is wiped clean off. We are still at the mercy of these needs. Thanks for an interesting thread...lots to think about.

 

[arkallen]

I can relate; and I appreciate your thoughts so much. I am finding this year a bit tougher I would have to say, but last year was probably the most joyful year of my life. I was free of many of the routine issues of working life that occupy so many years, and in my wheelchair was able to do a huge ammount of travell to be with family, friends and colleagues all over the country.

I also felt (and I still feel this now in the new year) that everything seems to have a glow to it. It sounds a bit cliche I know, but when I see a stranger down the street or when a family member drops in it all seems so much more valuable and intense.

Dianne, when you write "I am blessed with ALS" it really stirs my heart, and faith. Thanks!

 

[Sequoia]

Thanks for this post! when I got my diagnosis something extrodinary happened to me...words just dont seem to be able to describe it but i will try. I stepped into "the Stream of Life"....as I call it....which is nothing else but unconditional love.

I was devastated at the 3-5 years life span....because in so many ways I had just begun to live, really live...after the doctor told me, something happened instaneously, interiorly, that effected everthing exteriorly....life itself took on a glow, there were no more strrangers... i wrote about this in my journal. Everytime i read what I wrote it all comes back to me...
I am rivited in the present moment, and whatever tries to take me out of this "Stream", as soon as i notice it, I return to this Stream. I am convinced that i have lived MORE since my diagnosis than I ever had the previous 58 years. I think I will be brave, and post my first blogg on this journal writing, so I can share it with whoever is interested.

Diane, I hope this thread lives a long long time, and that others will post the possitives here, the little ones and the great...THANKS!

 

[Bad Balance]

Yes; many times even when I have a chance to look upon nature's blessings, I think that if this is only for me, what is the point? I am dying.

Every time though, something beautiful pulls me from this dark place, but lately it is more frequently as I start to see actual evidence of progression. I am fortunate to still have some of my mobility and doing anything physical still gives me inspiration. I am also so fortunate to have a very loving family with both my sons near to me.

 

[abbas child]

I hope you're able to function well and get all you need for the future before the losses are too great. And having a loving family with sons...is priceless. I realize we're all different, but in case it helps at all, I found the hard times were much tougher in the beginning stages. Much of that was due to looking ahead--not as you're doing in preparing--but in feeling overwhelmed. I believe it gets easier for many of us.

 

[SueG]

What a great thread! Like Ann, I tend towards Pollyanna-ish (is that a dated reference or what?:wink and have been working hard on finding the positive in my still-feels-new situation. Every day. I am blessed with close family and friends and living in a beautiful place with nature's inspiration close by. Lately I have been feeling like I need to work deeper to experience what Sequioa describes-- it is not difficult for me to be superficially positive, but harder to feel the suffusing joy I aspire to. Lots of inspiration here- thanks!

Sue

 

[pjm220]

I have often spoken of the blessing of ALS to my family and friends. I have been able to see things that I would not have seen before. When I was still mobile in a wheelchair, the kindness of strangers humbled me. I have been given the time to mend hurts and strengthen relationships before I die. What is important in life has become so much clearer. I am living more fully now, even though I live in a hospital bed.

Giving up my responsibilities was pure joy! No more chores! My time is mine, to read, watch movies, pray, watch my grandchildren play. I love the comfort I feel when my 5 year old grandson and I sit in silence together, each involved with our own electronics. He doesn't care that I don't speak much anymore. I have been allowed to see my husband in a caregiving role, something I would not have experienced without ALS. It has added a new dimension to our union. My busy sons have slowed their lives down to help care for me, and my daughter has taken up the role of "Big Nurse", which makes me love her all the more.

I believe I have become a better person by this illness. I can't talk well or much, so I listen. I treat every interaction with a loved one as though it were my last. I spend more time with God. None of these gifts were my doing. All came through the blessing of ALS, from God, for my greater good for all eternity. I believe this with my whole heart.

 

[rmstudier]

That's a beautiful post pjm220. Thanks for sharing.
Randy

 

[Sequoia]

wow pjm, that was a beautiful expresssion of the hidden blessings of facing ones own mortality. Thank you for sharing, for lifting us all up in our day to day struggles with ALS, and with life, which is so precious. This is the present moment, really the only time we have. May God continue to give you peace.

 

[arkallen]

PJM,
Thanks for such eloquent, moving words! I do love this thread.

 

[babygurl]

I send you my blessings and love. I'm glad your experiencing the world in a new and different aspect. it helps take your mind off of everything else for a moment