What gives you joy?Posted by patty on May 2, 2023 at 9:09 am
When I went to the ALS clinic, the social worker asked “What gives you joy?”. I thought about it and answered, “my grandchildren “. They do. But now I can’t play with them like I used to .like being outdoors riding bikes , writing on the driveway with chalk, running or walking after the 2 year old. After thinking about it, next time she asks, I would say “nothing”. I used to enjoy cooking and baking. In spring, I enjoyed cleaning up the flowers and shrubs and mulching. I enjoyed having my windows look clean like they weren’t there and not dirty. I liked my house clean. Now I just shake my head. I liked some of my clothes ironed. I miss bumming around all day; maybe stopping at 4-5 places to shop. Bumming around with my friend…Yesterday it took about 5 min. Just to peel a cucumber. Now I wake up and watch tv or use my ipad. It’s hard to depend on someone when you did everything yourself. Yes, I would answer with this ALS nothing gives me joy. Sorry but thanks for allowing me to rant.
MemberMay 2, 2023 at 4:04 pm
Understand completely and wish I had an answer or ideas for you and me both but I don’t yet but I’m not giving up on possibilities! Mainly I think some type of morning assessment might help just to stimulate my brain into a better sense of living with this stuff (not my usual description)There has to be something more joyful to our days hopefully through these forums we’ll get some answers!
MemberMay 2, 2023 at 4:47 pm
What helps me find joy are these words…
“Sure ALS is a challenge. You can fight it and try to live life as it once was, or pivot, and learn to live with it.”
MemberMay 5, 2023 at 8:14 am
I would say my grandchildren bring me great joy. No, I can’t play with them like I used to or read to them, but I can still give hugs, have them in my lap, and watch them play. I used to hike, but now hikes are on paved paths in a wheelchair, but I can still get outside and enjoy nature, trees, flowers, birds, and fresh air. I can still listen to music, attend church in person or online. I can enjoy performances in person or online. Other things that bring joy; reading a good book, gentle stretches, chocolate, phone calls from family and friends, getting cards or sending them. I like to make my husband laugh. I try to find 3 things to be grateful for each day. I think we adapt to the changes and look for things we can still do even if they are small.
MemberJuly 12, 2023 at 11:20 am
Just read the three comments above, and appreciate the sentiments expressed. My extensive garden was my pride and joy – having moved to accommodate my mobility issues, now the garden is tiny and my sister (and caregiver) does the digging. I used to enjoy book club discussions, but my speech has deteriorated to the point that all discussion is very difficult. I loved to cook and make multi-course dinners for friends, now I need a sous-chef just to collect the ingredients from the fridge/pantry.
And so at times , I feel NO joy whatsoever – only anger and regret. Then I try very hard to remind myself that I can still enjoy the flowers in the tiny garden and planters, I can still read and enjoy a good book, and that my knowledge of cooking and seasoning enhances our meals. And sometimes, not always, that does the “trick”. It has always expressed the mantra that “less is more”, now I am challenged to live by it.
Thanks for all the sharing and good advice from this site !
MemberJuly 13, 2023 at 12:22 pm
Heide, you are learning to change our perspective – – also called reframing, or pivoting. It’s a mindset and strategy that has helped me through my 13 yrs. with ALS. Bravo to you!
MemberJuly 13, 2023 at 11:39 am
I find peace and joy through my faith in Jesus Christ.
MemberJuly 13, 2023 at 2:25 pm
Small moments that I used to speed through. Short conversations with loved ones like my grown son. Humor sparks the dialog.
Binge TV shows. Nothing can change my attitude like clicking on an episode of Homeland, Band of Brothers, The Bear or Ted Lasso.
Being a DJ. Music. Spotify allows you access to the world’s entire music catalog for $10 a month. Really, I spent more than that as a kid on 45’s! I make playlist on Spotify for different events or moods.
Friends. Small get togethers. Chat over a glass of wine (or 2) and a prepared meal with love. People give me energy.
Getting out. Sometimes it is frightening to plan. For example, getting to watch Baseball live. But each time I am reminded of the meaning of Joy.
MemberJuly 13, 2023 at 3:31 pm
I have peace and joy through my Christian Salvation from the Lord that I have had since I was 11 years old. And over the last 60 years I have learned how to deal with all of my life issues through my Salvation and the leading of the Holy Spirit.
I place all of my Faith, Hope and Trust in the Lord and receive all my Hope and Joy from the Lord.
MemberJuly 15, 2023 at 5:27 pm
Writing brings me understanding, acceptance, joy, and peace. Sadness has become my friend in this process. It allows me to grieve what I have lost. The following is an excerpt from the memoir I am writing.
One of the most challenging things I had to endure, to accept unconditionally, is surrendering the relationship I thought I would have with the Grands, Henry (8) and Ellie (5). I have found that preconceived thoughts of how life “Should be” are the most difficult to lay to rest in accepting the present.
It began with not holding Henry as long as I should have been when he was a baby in Chicago. It was hard to stand up straight when cuddling and comforting him to sleep. Later it progressed into losing the ability to run with him, all tell-tale signs of my disease in its infancy. But I still could read stories, get on the floor to play cars or blocks, and relentlessly tease him!
When Ellie was born, my ability to hold her was limited to a few minutes of standing or, for a longer term, if I was sitting down. I have never been able to get on the floor to engage at her level. This floor time has always been part of the fabric of my life in bonding with children. It was all about play and silliness – building a relationship based on fun and interaction at their level. Observing the world through a child’s eyes is one of life’s wonders. It is one of the joys I have always cherished.
As I have said, saying goodbye to activity with Henry and Ellie has been challenging and ever-present. At first, I felt extreme sadness whenever I could not join in. Slurred speech does inhibit one’s ability to read stories and carry on any meaningful conversation. Running races and losing by inches is not possible. Playing tag or hide-and-go-seek didn’t work well – have you ever tried to play them from a 400-pound wheelchair? I missed building with blocks, playing doctor, playing cars, playing in the sandbox, playing dollhouse, and pounding nails in wood scraps out in the garage to make strange creations.
The sad occasions of being unable to engage in their lives have brought many tears in the private moments of my life. One of the comforts I have found in this vast emptiness was to hear the joy in Henry and Ellie’s squeals of pleasure as Linda (my wife and caregiver) chased them in the basement. It brought me out of the depths of sadness. Even though I could not be involved in the chase, I was so thankful that Linda could. She was having much-needed fun, as were they! Life was good as I had finally said “Goodbye” to that activity which brought peace to my spirit. This goodbye has been challenging as it has revisited me many times since my diagnosis. Each time I feel the sadness and the loss anew. And, each time, I have to say “Goodbye to You” again. It does get easier, or perhaps I am becoming hardened to the sadness. Yet Henry and Ellie are such joyful souls that bring me immense hope for the world that will remain long after I am gone. That is good.
I find comfort in the thought that my son and daughter-in-law provide all the love, activity, and fun that the Grands could ever need or want. Now, I am simply an observer of the life that Linda and I created.
My mantra in dealing with the losses of ALS has always been to grieve the loss, accept the loss, adjust, and then move on (GAAMO). I constantly adapt and move on to something I can do. Sometimes it works, sometimes it does not, but one always must try. It has worked well for me. Slowly, I am coming face to face with the fact that my options for adapting are shrinking by the dawn of each new day.
As a song for today, Freya Ridings sings “Lost Without You.”
Press the “F” key for full screen.
Sometimes I listen to this song in heartbreak and isolation, as Freya says. I am standing on the platform, thinking life was passing me by because I think I’m lost without my life as it was. But now I’m standing on the platform, happy to watch Henry and Ellie go on. Their beginning is my end. The circle of life is lovely, and the reality is that life is as it “Should be.” Life is good.
MemberJuly 16, 2023 at 10:08 am
Well said Len.
MemberJuly 16, 2023 at 12:24 pm
Beautiful, sad, and hopeful all at once – thank you so much for sharing your thoughts.
MemberJuly 20, 2023 at 9:04 pm
Len, your feelings are beautifully expressed through your written words. i really appreciate you sharing your experience, difficult as it is.
MemberJuly 28, 2023 at 9:12 am
Thanks – It helps me to process my world as it is now…to find peace where I can. May you do the same on the path you are on.
MemberJuly 16, 2023 at 11:27 pm
Alan and Heidi,
Thanks for the comments. I think one has to know sadness to experience joy. I think of my writing as being depressingly optimistic, as is the music I listen to. It is sad but, in the end, also hopeful. That keeps me going!
The link to the song I included in my memoir story did not make it through the approval process for this ALS site. (And I understand their reasoning) It adds a lot of meaning to the story. If you want to listen, type Freya Ridings “Lost Without You” into the Google search bar and scroll down to the one that says Glastonbury YouTube · BBC Music · Jun 30, 2019.
Heidi, I was an avid gardener and also created multi coursed meals for the love of cooking. Your “Less is More” mantra is appropriate for all pALS. I downsized to a few plants on the porch a few years ago. This year I surrendered those pots to Linda, and we bought an orchid that brightens every day that I wheel by it! I give it five ice cubes a week, which gives me great joy. When that gets too much for me, I will adapt and buy Bromeliads or Air Plants!
I also hung up my frying pans last year. I have a young home health worker come in for 3 hours a week to give Linda a break. I have him clean the bathrooms, and then we cook recipes together. He has had no experience cooking but is eager to learn and enjoys it. I can no longer speak, but I write out all the steps in detail to make my favorite healthy recipes. (It does take a lot of time) I also use a text to speech device. Linda gets 3 hours off, has the evening meal made for her, we have enough for a leftover meal and one for the freezer. If he likes the recipe I send a meal home with him. The kitchen is clean when he leaves. We can sit around a play cards but it is a way for me to do something to lighten the load for Linda! It is a win for him, me and Linda!
My Mantra when I was working, used to be “Don’t Sweat the Small Stuff.” With ALS it is now “Don’t Sweat the Big Stuff – Less is More!”
MemberJuly 17, 2023 at 11:00 am
Thank you once more Len, you are an excellent wordsmith. I have always delighted in language well used, that comes from introspection and with sensitivity – wish I could do as well. Like you, speech is becoming increasingly difficult for me, and I resort to the written word – email for correspondence with friends, and a journal for my personal ‘therapy’. I hope your wife won’t mind my saying ‘you are a man after my own heart’. Your memoir will be worthy of publication and may give hope and encouragement to many. Best wishes to you and to all participants in this discussion.
MemberJuly 17, 2023 at 4:30 pm
Len, found the song on Spotify. Very nice. Also try the song that I’m saving as part of a playlist for my wife when…. Warren Zevon, Keep Me in Your Heart.
MemberJuly 18, 2023 at 1:03 am
Alan and Heidi
Good song by Warren – at times, he has the tonal qualities of Bob Dillon. I see that our minds are on the same track with playlists when…. Music lifts my spirits every day.
Your ‘Smithing’ skills are also commendable – It is always rewarding to tell a good story, especially from the heart. Like you, it is currently my voice and my therapy. Linda did not mind your comment – I share it all with her.
I send my memoir stories from an online program I write through. It will be completed and published when I am gone. So far, I have about twenty stories, mostly about my present journey and thoughts on what I have learned. I include some stories of growing up on our Minnesota/Iowa farm and rural school life during the 1950s and 60s. I send it out to about seventy people when I write a chapter. I usually provide a link to a song that enhances my writing.
If either of you would like to read them (for that matter, anyone on this forum), send me a private message with your email, and I will include you on the distribution list.
MemberJuly 19, 2023 at 5:48 pm
Thank you all so much for sharing your thoughts and experiences. I hope that it is ok that I am a caregiver and not a pALS. But, to be honest, we suffer in concert with the person we love. And, sometimes, the cALS and pALS are a distinction without a difference when it comes to the myriad of ways that ALS causes so much suffering, pain, and so many losses.
I appreciated reading your posts as lately I have been especially sad, and feeling hopeless. My husband is entering his 6th year with bulbar onset. Since a year ago he is quadriplegic and he is total care. I braced myself for the physical demands, and with some nursing skills, it is manageable. What I didn’t see coming was the onslaught of fear and sadness that can overcome you and lead to emotional fragility. I’m hopeful that soon he will have a head mouse and can, once again, use his speech generating device. I have so missed his wit, humor, and comforting words. Something more than a word or two spelled out on a keyboard will be be so welcome. In the meantime, I will take to heart your thoughts and ideas — listen to a song or two. I need to play a few of our favorites, mostly Johnny Mathis. Once upon a time we had a dance or two every night to Mathis.
Thank you for letting me say a few words.
MemberJuly 21, 2023 at 12:41 pm
Gail, Thank you for putting into words how I am feeling today. I like you are a cALS. My husband has ALS with Respiratory OnSet. Everyone’s journey is different, so we are facing different obstacles, losses and challenges.
September will mark two years for us since diagnosis. We are 14 months past hearing “it is time to call in hospice”. In 4 more weeks we will be one year past making it to our 50th anniversary.
We are finding joy in those blessings of quality time together which we didn’t expect to have. Although the meaning of quality time is constantly changing. Joy in having a week or two before losing more abilities. But extreme sadness and grief when another ability is lost. You are so right in saying “But, to be honest, we suffer in concert with the person we love. And, sometimes, the cALS and pALS are a distinction without a difference when it comes to the myriad of ways that ALS causes so much suffering, pain, and so many losses.”
Thank you for your comments. They were needed today.
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