on grief, part one

My Ukrainian maternal grandmother (Baba) is in the late stages of ALS, also known as Amyotrophic lateral sclerosis, or Lou Gehrig's disease, after the baseball player who died of it in 1941. The same disease felled jazz great Charles Mingus, but they don't call it Charles Mingus disease, which is a shame.

I suppose to say that she's been an important figure in my life is an understatement, as I do think her influence has been profound. I was her first and only grandchild for six years until my brother was born, so in my early years we spent quite a bit of time together. She used to pick me up from kindergarten in her vintage Thunderbird convertible, which I thought was so glamourous.

She watched me in the early years when my mom still worked at the bank, when my parents went to Hawaii, and Palm Springs, and each trip they took to the hospital after each miscarriage.

Because of her passion and penchant for narrative - her ability to corral her helpless listener into hour upon hour of reminiscence - I came to appreciate the art of a good story. Because of her patrician good looks, penchant for fine clothing and irrepressible vanity, I've developed a keen eye for the aesthetic; I refuse to leave the house without lipstick on, and I've studied mirrors very closely for the past 27 years. Due to her perfectionism and demanding attitudes towards housekeeping/cleaning, I've turned a defiantly blind eye to every domestic task that's ever crossed my path.

There's one right and twelve wrong ways to make the bed? Fuck that!

Any condition (life itself) that is terminal is indeed cruel, but it seems to me that ALS is harsher than most. The body dies, agonizingly slow, with the human being still trapped inside.

At first it curbed her fierce independence.

Mobility limited, and with the right side of her body weakened, she was forced to move into my parent's home for what turned out to be nine months; a gestation period towards an ending rather than a beginning; a pregnant decline. She hauled herself around on a walker and tried to make herself useful by unloading the dishwasher and placing the items on the counter for my dad or brother to put away. She hadn't the strength to lift a dish into the cupboard but she hated to sit around. She kept her little corner of the kitchen table tidy and bitched about the general mess of the place. So Taurus stubborn.

I used to think she was going to outlive us all; perhaps she did too.

Not only was she physically tough; having survived the pneumonia that killed her twin brother at 4 months, having survived getting hung up by her arm from a nail as a child, having survived severe burns to her face and body as a young woman, (and she walked to St. Paul's Hospital at 6 o'clock each morning to get her dressings changed so no one would see her like that; oh, delicious vanity!) and having walked through a blizzard in Saskatoon in January to the hospital to deliver my mother (this is true) -- she was also stubborn and cantankerous enough that I thought she'd have been preserved from the inside out. She was never sick. She nursed us, my mom, my brother and I, through chicken pox and never caught it. She outlived her husband and her entire family.

I often rolled around on the floor with the brutal agony of menstrual cramps as a pre-teen and she would always recount the tale of her first menstruation, right in the middle of a baseball game. (I'm not sure where this athleticism went, but those genes sure didn't transfer to either my mom or myself; shopping is our preferred team sport.) She felt a trickle as she ran to the home plate so she just kept running, to the confusion of the boys. Went to the outhouse, wrapped rags into her knickers, and ran back out to finish the game.