There are many things I love about my brother, Anthony. Probably at the top of my ‘Why I Love Anth” list is that he married Julie.
When I was in junior high I wrote a poem and titled it “Smile”. I remember one of the lines reading, “Smile and the world will accept you.” The concept was that it’s easier to just smile and pretend that things are ok, rather than be dark and outwardly different for others to judge or label you. I feel the same way again.
On the outside I have a smile. The inside of me is broken. I am constantly thinking of amm and missing her and wishing I could just cry all of the time. But I know that isn’t an option. So instead I smile.
My apologies to my dear, dear friends whom I think have taken the brunt of this broken-ness, and I am sure you know who you are. Even though I hardly ever call or email you, please know that I think of you often, many times a day, really. It’s just that the majority of the time I just don’t feel like talking or sharing.
I hope that as the days go on, my inside pieces will start to be glued back together and you will still be there.
I wanted to share a few pictures of the very special photo book that Julie’s mother, Joan, created for our family. Joan gave one to Charlie, Anthony and me. She gave us this book last year and when she presented it to me, I cried. Good tears. Tears for the memories of amm, Joan’s thoughtfulness and what a fantastic day the Anne-Marie Merle Wear Your Red Celebration was.
These photos don’t even come close in capturing the true essence of the book. I took these with my iPhone camera, so the quality isn’t quite there. But I am sure you can imagine the crispness of each page and if you squint, read the special words written. 🙂
While on my way home tonight after a tap class, the car radio started playing Dancing Queen by ABBA. Immediately I was brought back to the hospital room and the memories of amm in her chair or bed with her friends surrounding her and all of us singing our hearts out. We did it a few times actually. amm and I would have dance parties, as I liked to call them.
I cried while driving home and singing my heart out.
I finished Still Alice last night. I couldn’t stop reading it and needed to find out how it ended. A number of times I let out an audible sigh, acknowledging the parallels to amm’s story. I cried a lot while reading this book. More than any other book I have ever read. A lot of tears for my sadness, amm’s loss and everyone else and their families who are living with some form of a dementia disease.
I think the author of Still Alice looked through a window into our family’s life during amm’s illness, changed a few minor details and wrote a book. I am amazed that as the story unfolds, it’s the exact same path that our family took. But maybe I shouldn’t be. It’s making me realize how connected families are who are faced with dementia because of the common ties. Even though every situation is different, they are the same.
Alice has just told her children about her diagnosis and the genetic link, each of them having a 50% chance of carrying the gene causing early onset Alzheimer’s. And they are faced with the decision of having the testing done themselves. Exactly as Anth and I were.
Ok. So I’m still thinking about Still Alice. The more I read last night, the more I wondered if I really am ready to read this book. The progress of the disease with Alice compared to amm is just too similar. Alice becomes disoriented while out for a run in a neighbourhood she has lived in for over 25 years. The buildings and streets were familiar to her but she couldn’t remember how to get home. She worries about this disorientation, but tells herself it’s just her getting older and maybe menopause. But she does also question that maybe she really is losing her mind.
The first major symptom I noticed with amm was the weekend in March 2009 when she drove to Edmonton for the weekend. She was over an hour late and didn’t answer her cell phone. Once she arrived she just said she took a wrong turn and got lost, although she had been coming to my house for almost 5 years. But she too rationalized her ‘dizzy spells’ and being off-balance to new medication she was taking. Reading the thoughts and fears of Alice have made me question how amm really felt during those first few weeks of when the disease really began to take over. She must have been scared, not knowing what was happening to her, but feeling that she had to be brave for her family.
I remember talking to her on the phone while she was in the hospital in Saskatoon, just days before the diagnosis. She told me that she felt ok and everything was going to be fine. She had to have known things were more serious than that, but of course, she put her family before herself.
I finished reading Through Black Spruce. I was constantly wondering about what stories amm would have been sharing with us while she was in her coma, as the lead male character did in this book. Then last night I forced myself to start reading Still Alice. I held the book and took a few deep breaths before opening the front cover. I feared what memories this book would make me live again. I felt a calming reassurance when the inside title page had a picture of a butterfly under the title. The butterflies continue on the edge of each page.
I have only read the first chapter or so, but I constantly thought of amm in the same scenarios as Alice. And I cried.
Today amm had me hire professional cleaners to wash the exterior of our house. 🙂
I really want to sew Arrine her first Hallowe’en costume. amm made so many costumes for me between Hallowe’en and dance, it just seems the right thing to do. For me to carry on this tradition. I don’t want to ever think back and regret not sewing Arrine her very first Hallowe’en costume. So the other afternoon, Nick, Arrine and I went to Fabricland to find a pattern. I was hoping to find a costume pattern from one of the lines that are easier to make. Because really, I don’t have a ton of time to be sewing a costume for Arrine to wear once and spit up on, but I still want to sew it. We spent 40 minutes of me humming and hawing between the two, yes two, patterns that were appropriate for infants. One for really cute jungle animals, although I would need to be a professional seamstress to pull off the details with about 89 extra hours of time on my hands, the other a basic pattern of boring costumes. We left empty handed. And I felt discouraged.
When I was young and amm made me stand still for fittings or presented me with a new stuffed animal that she sewed, I didn’t think much about where the costume or toy really came from, or the time it took to make it. Later in years I remember asking amm where she found the time to sew for us kids. She explained that she would stay up after we had gone to bed, sometimes into the early morning sewing. And I imagined her, tucked in the basement of our homes in Saskatoon and North Battleford, sewing under dim lighting. I want Arrine to imagine me doing the same one day.
The search for the perfect pattern continues…