By Crocheting was one of my mom’s favorite activities, and as her Alzheimer’s progressed, it became a way to keep her mind active. While, for me, these Granny squares represent the early years of her early-onset Alzheimer’s diagnosis and how she slowly began to unravel with the messy stitching, they also provided a universal visual that articulates the complicated feelings of grief and sadness that come with a disease that more than 5 million Americans suffer from currently.
At the time I took the picture of my mom’s crochet work, it had already been several years since she first made them in an effort to protect her mind for as long as possible. Seeing the squares all laid out was an overwhelming reminder of all the ways my mom gradually changed from the person I counted on for everything to the person now entirely dependent on us.
After placing the last tangled bit of yarn along the incomplete grid laid out on the hardwood floor in my parents’ bedroom, I burst into tears. I grabbed my phone and snapped the picture, knowing this was a part of her legacy I needed to preserve.
Unravelling Alzheimer’s: What my Viral Photo Taught me About Grief
At first, I only posted the images to my private social media account, but after some encouragement from a friend who said it might be a helpful visual for other caretakers, I posted the image to Reddit. Uploading it fairly late in the evening, I enjoyed watching my post gain modest interest from the social community before heading to bed.
The next morning I was astonished by what awaited me when I woke–people from all over the world were reaching out to tell me how much the photo–and my mom’s story–had touched them. Many people shared that my post helped them visualize the trajectory of the illness, and reminded them of their own losses from this merciless disease.
Despite a marketing career helping major brands and organizations get noticed online, I never expected such raw, personal content of mine to “go viral.” But then again, as I try to explain to clients, going “viral” isn’t something you can necessarily plan. Blame it on the inevitable familiarity I have with my own life, but it’s easy to take for granted that something you’ve lived with for so long might be interesting to other people. I spent the first part of the week trying to keep up with personal messages. Eventually, the experience evolved to interviews with reporters across the world. (Amusingly, it didn’t get picked up in the States until a couple weeks later).
I admit that the experience was exhilarating. I loved the ability to connect with or hear from other people who understood the pain of this disease firsthand, especially since so many of them said it had been hard to find anyone who related to their experience. It also felt good to know that the story was helping people better understand that Alzheimer’s wasn’t just about a person becoming absent-minded–it was a complete unravelling of the self. Most of all, however, I loved that I was able to make good on the silent promise I made to my mother: that she would never be forgotten as long as I was alive to speak her name.
But in the midst of the excitement, I found myself confronting another unexpected, albeit familiar feeling due to this brief blip of internet fame: grief, in all its confusing and complicated glory.
This grief was different from the feelings I typically experienced during my mom’s Alzheimer’s journey. While I was grateful to help foster awareness and understanding of Alzheimer’s, I felt exposed. Suddenly, my story was no longer my own. I felt my intimate connection to the crocheted squares painstakingly crafted by my mom’s hands slipping away with each new share of my picture to some far corner of the world.
Even the most careful journalists managed to alter my truth unintentionally when trying to abbreviate 13 years of life into a couple succinct paragraphs. And while the overwhelming majority of feedback from the outside world was positive, it was interesting–and strange–to get some blowback from trolls, some of whom questioned whether a person with Alzheimer’s had crafted these squares, and others who said her work–much of which was finished before the disease fully set in–was crappy.
My Alzheimer’s Grief Journey Through Storytelling
Sara Wuillermin’s photograph was shared around the world, including by Bill Gates. Sara and her story were featured on ABC, People Magazine, The Today Show, and more.
As someone who naturally gravitates towards storytelling and communication as a means of expression, the struggle of what to keep personal versus what to share with the world has been a significant part of this long journey. I’ve often found myself having to weigh the benefits and drawbacks before posting. On one hand, I want to do whatever I can to make sure my mom and her memory are preserved, while making space for others to share their stories. However, I also want to be able to process my own grief without having to worry about how others might respond or react.
To be honest, I’m not sure if I’ll ever fully make peace with either side–there will always be a power in the connection I’m able to make with other people, while I’ll always cherish the sacredness of the intimate pieces of grief I hold close to my heart. I’ve learned to appreciate the chances I’ve had to be able to connect with other people in this way, and consider those opportunities some of the most meaningful moments in my life.
While there’s no doubt I’d trade in every single experience, life lesson, and strange silver lining I’ve collected if I could just have my mom back, I’ve found myself so grateful for the community I’ve been able to learn from and grow with throughout this long grief journey.
Gratitude isn’t always an easy quality to come by, especially in situations steeped in so much pain, but this 15-year journey has allowed me to appreciate the many ways it’s allowed me to evolve.
Sara Wuillermin is a branding and strategy consultant based in South Jersey and host of the podcast Bury Me in New Jersey, a show focused on grief, death, love, and everything in between. When she’s not working with clients or talking death, she’s spending time with her loved ones, hanging with her cats, and curating the perfect playlist for just about any occasion.
Thank you so much for this article, the visual is so interesting and impactful. My husband of 46 years (he is 75) is showing signs of Alzheimer’s. Personality changes, accusations of things I have not done, he is also extremely hard of hearing but refuses to admit it. Feels like a battle of balance each and every day. Blessings to you and your family
As the disease progress Mom becomes less Mom, each day is like a lucky packet. So you must be on top of your game always & as creative as Father X-mass that got lost in the southern hemisphere on a hot summers night.
This diseases is terminal with no hope of recovery – #deathsentence101
REMEMBER THIS:
“If you’re not in the arena also getting your ass kicked, I’m not interested in your feedback.” I love that quote. It’s a play on Roosevelt’s famous quote. A good reminder that not all of your critics carry the same weight.
The experience of your squares photo and your journey with your Mom is sitting square in my lap. I lost my own Mother on New Year’s Eve after a slow, 13 year battle with dementia. To see a vibrant, active and intelligent woman fade away was indeed the longest goodbye. Like you, I’ve saved a few things that were important to Mom that she continued to try to do but obviously showed the signs of her state. One is letters. She wrote often to family in Alaska and always sent cards at Holidays. I have a collection of mis addressed envelopes, stamp on the wrong side with jumbled words, never mailed. The other is items she would sew. A gifted seamstress , she could make anything from gowns to bibs to slip covers. There are a couple small projects at the end of her ability to sew the most important to me being a pillow. A travel sized pillow she covered haphazardly in leftover fabric and hand stitched with big giant crooked stitches like a child’s. She drew a flower on the front and in crooked, misspelled words attempted to write
“ Time for your nap, honey “.
Knowing I work hard and am often tired, she was thinking of me. No doubt your Mom was a creative as you are, and a nurturer. I’m so pleased that we both can see ( through our tears ) that love persists – along with the core of who God made us to be, very far into this illness.
We’ve got to find a cure.
Thank you so much for sharing this story!