There’s a lot to be said for being ridiculous — if you mean to.
I often mean to.
But I realized very recently that my family doesn’t always know when I’m joking.
I say something ridiculous. They burst out laughing.
“How can you have known me for so long and not know when I’m joking?” I ask, serious now.
“Because you’ve come out with the craziest things sometimes,” one of them answers. “You’re very special.”
Oh… Of course.
They were there. Witnesses to the not-so-funny moments in the very bad years.
All those times.
When I struggled to get the words out, struggled to even think of them, hold them long enough in my mind — only to have them come out in a mish-mash.
Or when the words came, but I asked the same question over and over until someone said: “You’ve asked that question 5 times in the last hour”.
I can smile at some memories now.
I remember the first time my family pulled out my favourite board game — wanting to help bring back my words. It was a warm day. We sat at the table on the verandah.
I couldn’t remember the rules. Couldn’t find the words.
But we stuck with it, moving slowly through incomprehension and frustration to laughter at the ridiculous words I created.
And — the whole time — I called the game “Scramble”, not Scrabble. And no-one corrected me.
It was, of course, the perfect adjective for my mind and speech, but I didn’t make the connection at the time.
I empathize — very keenly now — with people whose memories have been stolen by head injuries, or diseases like Alzheimer’s.
People like my friend whom I’ll call Mel.
Mel knitted sweaters, blankets, and made gorgeous quilts — prized by her family and friends.
Mel had now forgotten all that. Forgotten even family and friends.
I was surprised at how elegant she still looked. Dressed in a light-blue skirt-set, not a hair out of place.
We sat together in the lounge of the ward where she lived.
It was a locked ward.
Mel smiled at me politely.
I chatted, paused between sentences, searched her face for signs of recognition. I told her it was freezing outside. I told her that I’d recently brought my relatives to see one of her quilts that still hangs in a prominent place that we both know very well.
I patted her arm.
I said I wished I’d asked her to teach me how to quilt.
“I can’t even figure out how to cut the squares of cloth,” I confessed. “And I have no idea how to join them.”
Her eyes fastened on mine.
She seemed to listen, and even nodded.
Then her fingers started to move on her lap. Almost as if they had a mind of their own.
Smoothing out the imagined fabric. Drawing, cutting, even joining our imaginary squares.
I watched, transfixed.
Mel looked up at me as if to ask: “Got it now?”
Sublime. It was sublime.
Mel was teaching without words.
I nodded, at a loss for words.
We sat together.
Silent. Smiling. Holding hands.
It was enough. It had to be enough.
The blank look was back.
I finally, reluctantly, said goodbye. Hugged her and left her there.
I heard the thud and click of the door behind me as it closed and locked.
Dedicated to everyone who has a head injury, dementia, or whose brains work differently.
39 thoughts on “Being “Special””
Oh Cynthia, how special a moment that was with your friend. My landlady’s elderly Mum has come to live in this large rambling house where I have an apartment. She struggles with Dementia. I sit with her and we sing and the other day I placed some knitting in her lap and she came right into the moment and showed me how to knit.
Your book ‘A Good Home’ has just arrived and it is a joy. I have come to bed early to read. Thank you and I will make sure I write a review for you when I’ve finished. Hugs for you. 💕
Jane, your reply got me all choked up: “I sit with her and we sing and the other day I placed some knitting in her lap and she came right into the moment and showed me how to knit.” Thank you for doing so for this lady.
And thank you for buying my book. I’m honoured.
I am loving readin your book Cynthia. ❤
What a poetic post for yourself and for others! You ARE special now as you feel and understand what others are going through.. And some days I think my old brain is working differently! A beautiful story of your friend whose hands remembered how to quilt even if her voice did not. Hugs!
Thank you very much, Jo Nell. Reading Mel’s story also brings tears to my eyes.
Beautiful! Thank you Cynthia.
You are welcome, and thank you for the visit!
I’m glad you found yourself again. It sounds a bit scary to someone who hasn’t experienced it.
I have a hundred questions about the forgetting, none of which I expect you to be able to answer, but I wonder what it’s like to have no memory. Could it be blissful, with all the bad memories erased? Or is it hellish? Hellish for us who are no longer remembered yes, but what about the one who has forgotten? Unfortunately they can’t tell us what it’s like, but I do wonder.
There’s a point at which it is not hellish for people in an advanced state of Alzheimer’s, I understand. Perhaps that’s due to the bad memories being erased, as you suggest. But the confusion of the early-middle period, when you don’t know what’s real and what isn’t, and you can’t express yourself properly, can be hellish. I often likened what I went through to being somewhere between the early and middle stages — some of the symptoms, I understand, were the same — but this is only conjecture.
Let’s hope they find a cure sooner than later!
The honesty in your words hit home as I watch my sweet mother slip away as she battles dementia. Thank you for sharing your heart, Cynthia.
I’m sorry, Jill. My dear friend’s mother had been slowly going through the stages of it. It’s rough for all.
It has given you a special empathy and appreciation for memory and the loss of it Cynthia – something I guess we all take for granted until it becomes impaired……. Siddy and I visit a care home twice every week to visit and entertain (him) and craft with those who want to help (me). We visit an open ward and a locked ward and from the locked ward I come away every week with my heart a little bit broken. To some we are perpetual strangers. To others we are friends, but they don’t know how or why – some even wonder if we might be family. I watch as they fade away at different rates, sometimes in the space of one week the change can be shocking. I’ve learned how ‘Sundowner’s Syndrome’ can change personalities and tempers for the space of a couple of hours. One dear soul, in the throes, asked the visiting chaplain to toss Siddy out the window as she momentarily believed dogs should be kept outside in kennels. The next week she told another resident that she had found Siddy and was going to keep him in her room as he was a darling. It is both challenging and uplifting to visit, to interact, to treasure any moments of awake interaction. It is always good to see eyes light up and hands reach out for my little dog as he greets each one and does the rounds for his pats and chats. It’s good for all of us.
I’m sorry to have gone off on a tangent, your story is so inspirational and so special – you are indeed a treat! ❤
It’s not a tangent at all! It’s an added dimension that helps us understand this stage of life. Thank you, and congrats on the work you do. Some people are afraid to go to such places, but you and Siddy keep going, and what a great gift that is.
This is a lesson in treating the people as you would have treated them before–not in the sense of expecting the same reaction or exchange, but in the sense of reaching the person there who knows you at some level and letting them know you know them. Lovely, Cynthia. It’s easy to stop trying, but so good when you’re able to keep on.
It’s easy to stop trying, you’re right. And one also has to accept the inaccessibility that comes with the latter stages. But we still have much to learn about human contact and how it affects people with dementia.
That is a very touching story and moment you shared with Mel. Sometimes we can’t make those connections anymore. It was hard with my step-dad and his dementia. I’m glad you’ve healed and have the loving support of family and friends. Kudos Cynthia.
What a story!
Special and yet poignant… beautiful, Cynthia.
Cynthia, this is so very poignant. Made me think of my mom who had Alzheimer’s. Thank you for writing about your friend, and also for sharing your own experience.
Such a special story, Cynthia, and a lovely reminder that each person, no matter how their brain works, is special. There may be remedies or treatments for brain injury or dementia but the most powerful medicine of all is acceptance and love.
Amazing account. I could almost hear the clicking of the door as it closed. As we age, we all struggle with remembering a word or can think of the first letter but not the rest, but it is nothing like having our memory wiped clean. Applause to all those who continue to maintain relationships with loved ones in this time of loss.
Oh my how you’ve hit my current dilemma.. I suffer from cognitive barriers as a result of Fibromyalgia and its nastiness. Friends just cannot comprehend how angry losing oral/visual language and information hurts.
This is a beautiful post, Cynthia. Cognitive barriers can come from many different causes.
I don’t know if you have read “My Stroke of Insight” by Dr. Jill Bolte Taylor, but it is also a fascinating read. Rick’s mother had given us the book to read some years before we took her in, “just in case” she ever had a stroke. She thought it might help us understand. She never had the dreaded stroke, but she did develop mild dementia before she died. I found a link to an NPR interview. The book takes one through her personal journey of having a stroke through the long, difficult process of recovery. Told from her own viewpoint as a neurological researcher, this story was very enlightening.
You also have your own unique insight into the process of recovery from brain injury. Your stories and posts educate all of us, and teach compassion. Any one of us could find ourselves in the same situation at any time. Thank you, and your readers, for sharing their stories.
I really tuned into this, with your description of your friend who is there and not there. I did research with men and women suffering from an early onset dementia. Some of the greatest moments were those brief windows, when their ability to communicate or their skills broke through for a moment.
A beautiful post, Cynthia. I worked with dementia patients for years, and my heart ached each and every time they looked at their loved ones blankly, and then looked away. You are so blessed to have come back from the depths of ‘scrambled’ cognition ❤
This post really got to me. My mom suffers from what’s called semantic dementia and it’s all about losing words. You have insight into how that feels but the happy ending of coming back from it!
There’s so much we still don’t know about the brain, Kerry. One of the leftovers from that time is an occasional stutter which — after a good stretch of speaking clearly — always takes me by surprise when it returns, and brings back my fears about speaking. I still don’t understand it and am sure doctors tried to explain, but of course, I don’t recall. My family and I have been trying to identify and note the times when the stutter returns.
That was a beautiful story, Cynthia. It made me tear up a little!
Our brains are such precious thing.
My aunt had early onset alzheimers. It was so sad to watch her decline and tough on all her family. You wrote to tenderly of your friend. Thank you for posting.
Just reading that, my heart so went out to Mel. But you know she’s in there, and somewhere, somehow, she knew you, too. As for you, happily, you’re doing better. You don’t need to be any more “special” (in that regard), and you’re pretty special just as you are! 🙂
Thank you for this very kind reply, Jeanne. I’m very “special” here at home: Lord knows what I say sometimes, because I clearly don’t know what I mean half the time!
For some years I did voluntary work with dementia sufferers. Just as you discovered you were able to communicate with your friend by reminding her about her skills as a quilter, so we searched for the keys which unlocked peoples minds for a while and gave us a glimpse of what these poor men and women were like before their illness. Sometimes the key was a simple everyday task, a task that was so familiar at one time that it could be done without thinking. Usually it was music – songs or hymns.
Thank-you for such a tender and compassionate post. I admire your courage in writing so honestly about your sufferings and difficulties.
Oh Cynthia .. bless. I read this and cried
Sorry about that, Julie. If it helps – I got choked up too. Most of this post was pre-written and when I went to put a fresh “top” on to it, my eyes got weepy.
What a beautiful, touching story, so amazing that Mel was able to ‘teach’ you despite everything.
I’m glad I finally got here. A beautiful post and no one would ever guess you had ever had any difficulty with words. I understand only too well. it’s why I started blogging. Writing helped me find words again. Never as well as before my illness but I’m functional now and can complete most of my sentences. I’m not sure what caused your loss but mine came from Bells Palsy. it hit like a stroke and it was several years before I could find most of my words. But the remembering is something that goes away for so many reasons. One day we will fully comprehend. You have a unique look at being special. Thanks for sharing it with us.
And thank you for sharing, Marlene. After my car accident, cognitive skills and speech and the whole brain are still a mystery to me. By the way, they say God doesn’t give us more than we can handle, but in my clearest moments, I did often wish God didn’t trust me quite so much! (smile) My speech still sometimes goes haywire unpredictably. The last several months, I’ve been making notes of when it happens (if I remember to do so) so I can get a better idea of what conditions bring it on. It would be nice to not worry about it, especially with strangers.