I don’t get involved in many of these social media campaigns – Facebook activism as it’s often called, in which you join a group calling for an end to some atrocity or a ban on something and you’re done. I’d rather work on real things, behind the scenes, speak up when I feel the need, write about things and hope that I spread the word in some small way.
Alzheimer’s Disease is a whole different thing.
To me, Alzheimer’s isn’t just another cause, it’s a threat. A threat to my family and to my own well-being.
When I was a little girl, my dad used to take my sister and I to visit my Granny. Something you have to understand about my family is that my father was 13 years older than my mother – he was in his 50s when I was born – and my Granny was quite old when my Dad was born. When I was born Granny was already in her 80s and she was already suffering from the early stages of Alzheimer’s.
I hated going to visit my Granny. She was almost deaf, she and my Dad would have repetitive conversations since she couldn’t remember what they had already talked about, and I have my doubts that she ever knew who I was or how I was related to her. I don’t even know if she knew my Dad had divorced his first wife. She died when I was 8 or 9 years old.
After she died I sort of forgot about her and the disease that she had. After all, I never really knew her as a person, she was gone long before I had any consciousness of her.
And then I got to my last year of high school.
Something else it’s important to understand about my family: My parents separated when I was 3. Growing up my family as far as I was concerned was made up of my mother, my sister and my maternal grandparents. Tutu and Gramps were always around, always taking care of us and our mom. If you look back at the pictures I drew in Grade school, when I was asked to draw my family it was always a picture of the five of us. One Hallowe’en when I was in Grade 2 or 3 I decided that instead of Trick or Treating I would stay home with Tutu to hand out candy.
We took family vacations together, they took my sister and I to museums. One day Tutu took my cousin and me to the park near our house and I stepped on broken glass in bare feet – she carried me home. I was by no means a small child.
When I was 19 Gramps broke his leg and Tutu came to stay with us while he was in the hospital. It quickly became clear that something was wrong. Gramps eventually admitted that things had been right for longer than we realized. Soon Gramps was transferred to another hospital to recover and Tutu was admitted right along with him.
For three years I watched to of the most important people in my life struggle with taking care of her while she deteriorated. I grew to hate her for what she was doing to my mother. When she died in 2003 I didn’t mourn her – I already had. She hadn’t been herself for a long time.
I still have a lot of anger over this disease and the pain it caused all of us, but the anger is outmatched by the fear. I fear the day my mother starts showing signs, I fear the day I forget my husband, I don’t want to ever go through that again and I really don’t want to put anyone through it.
I’m not going to pretend that this disease is more important or more destructive that anything else out there, but I am going to use my little space here to draw a little attention to something that is very personal and very painful for me, and to draw attention to an interesting campaign http://www.1mtweets.com/ that allowed me to memorialize my Tutu as one of the millions affected by this disease.