I’ve never known such pain as that of my broken heart, a physical presentation of indescribable grief.
My ALS journey, a treatise on grief, started with the loss of cute shoes, then my career and mobility. Sometimes I threw things in frustration, followed by the snot-faced ugly cry. You know, the cry that mocks your Kleenex.
I adjusted, adapted, accepted, and returned to gratitude. I found a new normal with the help of family and friends.
My arms and hands betrayed me next. Goodbye driving, feeding myself, and giving hugs.
So, I adjust and adapt. Technology helps. Yet, I haven’t found my new normal.
I’m in the throes of grieving and the tears show up uninvited. I keep the grief hidden until it forces its way to the surface, like a foreign body that needs to come out. There’s no stopping it and it hurts like hell.
I mourn the everyday use of my hands, but I’ll adjust to someone else bathing and feeding me. I use my eyes to type and text, hands free. What I’m having difficulty losing, that no one and no technology can replace, are the simple pleasures of teaching my grandchildren. I’d dreamed of being like my grandmas. One taught me to crochet, and I picked cucumbers with the other. We baked and shopped, read and played games. Above all, I felt their love.
With my grandchildren, I want to play silly duets on the piano. I want to make sandcastles on the beach, cookies in my kitchen, and strings of popcorn and cranberries for the Christmas tree. I want to play hide and seek and tickle their tummies when I find them. I want to hug them and put Band-aids on their knees. I have to accept the fact that I never will.
What I fear the most is being a disengaged grandma that isn’t able to show my grandkids how much they are loved and adored. I fear missing out. I’m profoundly sad and know I have to grieve before I can move past this.
I share my pain and struggles in this public forum because I promised to be authentic and transparent on my journey. I know it’s hard for you to read this. Please don’t feel sorry for me. Compassion is welcome, pity is not.
So, what now? Have you lost someone or something important? Allow yourself to grieve, it’s part of the healing process. Do you have a friend going through a difficult time? Come alongside and sit with him or her through the silence and tears. Don’t say or do anything to fix it. Just be there.
My tears will stop. My family and I will find a different way for me to stay engaged. I have no doubt. I will adjust and adapt. Eventually, I will accept it.
I’m Forgiven and Free and on the road to gratitude.
March 12, 2018 at 4:41 pm
There is no way that I can understand what you’re going through because I am not living it! However I will stay by your side and help you through this difficult process with open arms! I love you Shelly
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March 12, 2018 at 8:07 pm
I don’t know how old your grandchildren are, but they will feel your love whenever they read this post. 💜
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March 12, 2018 at 10:30 pm
Hi Shelly! My thoughts ( as a former teacher of young children), please use your beautiful words to let those babies, and they will always be babies to you… to know something so many children and young adults today do not know or understand…and that is empathy, compassion, selfless acts, generosity of time, commitment to others…. you have a gift that very many grandmas don’t have, the ability to touch your readers. I always pretend you have sent me a personal message, I am forced then to stop, and respond. You already know you are different grandma, but you can use that difference to expose your exceptionality….. your ability to shake us and wake us to the here and now. I don’t know anyone anywhere who lives a more authentic life. Make your gifts known and there will be no better example of humanity, and in these days and times we all need a good dose of humanity. I love you Shelly because I here and feel you, speak to those babies and they will have your words of wisdom immortalized …Meg Drummer
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March 12, 2018 at 10:40 pm
I love you Shelly…….your cousin Cindy
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March 13, 2018 at 4:12 am
Shelly, you are teaching your grandchildren something far bigger than knit&purl, band-aids, and gardening. Your strength and grace transcends all of those things. My heart aches for you because I understand your loss, but you must know that your children and grandchildren are witnessing (first-hand) what strength, grace, and love really looks like. It’s a priceless gift.
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March 13, 2018 at 4:36 am
This is incredibly sad to read – not with feelings of pity – but with feelings of compassion. I love the idea of you writing to each of the grandchildren, let them know what you dreamed of doing with them and let them know that you love them. I love that you speak your truth. I’ve watched as you have stayed connected to your family, community and church and expanded your horizons to advocate for ALS patients. In the process of learning about ALS you have met and also lost some amazing people that would not have been in your life except for ALS. You are right to grieve each step of this process and I can only imagine how hard losing each function has been. Love your sense of humor with your “out of order” tattoo on your foot. Only someone as amazing as you are could do that!
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March 13, 2018 at 10:44 am
i feel you. On a similar path. May all beings be happy
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March 13, 2018 at 11:41 pm
My dear friend have no doubt that your children, husband, grandchildren and friends will never doubt how much you love them. your words are a gfit of inspiration and encouragement. Your faithfulness to Christ in the midst of this scary journey is awe inspiring and truly reminds us all what really matters in life and how this is not our home. Oh to one day be completely whole in body and soul!!! Love you friend.
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March 14, 2018 at 4:20 am
You are a truly inspiration, you are amazing lady.
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March 15, 2018 at 4:23 am
Love you, Shells! 💜❤️💚
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March 18, 2018 at 1:30 pm
Shelly, I understand, and appreciate, your distinction between pity and compassion. I never feel pity for you. I feel an incredible amount of compassion. Oh, Shelly, of all the cruelties of ALS this one, the inability to be physically affectionate and physically active with your grandchildren, seems like it cuts the deepest. My heart actually aches for you. You have often reflected on your gratitude for your wonderful relationship with Steve, your children and grandchildren. I often think about how ALS has taken your mobility. However, I never made the connection as to how it impacts your ability to interact with your grandbabies. I think the sound of children laughing is the sound of angels. To not be able to trigger that, by tickling your grandchildren, is, I imagine, excruciatingly painful. Like all of those who care for you I wish I could somehow make this better for you. I wish I could give you my arms and hands and legs and feet for a day so you could romp with your grandbabies.Yes, as others comment, there are other ways to show your love. Yes, you always adjust and find gratitude. But neither of those make up for or change your loss or heartache. And that loss and heartache are not pitiful; they are painful and I offer you abundant compassion.
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March 18, 2018 at 1:36 pm
Shelly, I understand, and appreciate, your distinction between pity and compassion. I never feel pity for you. I feel an incredible amount of compassion. Oh, Shelly, of all the cruelties of ALS this one, the inability to be physically affectionate and physically active with your grandchildren, seems like it cuts the deepest. My heart actually aches for you. You have often reflected on your gratitude for your wonderful relationship with Steve, your children and grandchildren. I often think about how ALS has taken your mobility. However, I never made the connection as to how it impacts your ability to interact with your grandbabies. I think the sound of children laughing is the sound of angels. To not be able to trigger that, by tickling your grandchildren, is, I imagine, excruciatingly painful. Like all of those who care for you I wish I could somehow make this better for you. I wish I could give you my arms and hands and legs and feet for a day so you could romp with your grandbabies.Yes, as others comment, there are other ways to show your love. Yes, you always adjust and find gratitude. But neither of those make up for or change your loss or heartache. And that loss and heartache are not pitiful; they are painful and I offer you abundant compassion. —- Eileen
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