I was 12 when my mother was diagnosed with rheumatoid arthritis. I remember the confusion that reigned in our household, which my mother used to manage with utmost precision. The perfectly maintained yard, the beautifully decorated and maintained house, the well-stocked pantry and kitchen, the pristine guest bedding, and all that went into the affairs of a family with eight children, all of it fell by the wayside and took a second seat to the health of my mother who, at only 40, was alternatively in excruciating pain or under heavy medication. For several months, all of us, along with the household staff, who were with the family for years, looked confused and dazed, in need of instructions, which used to be issued by my mother in frequent orders but which all of a sudden had stopped. My father was the first one to realize that my mother was not going to "get better" soon.
I remember the day he called me and four of my sisters into a room and closed the door. He said that while he was going to be looking for the best possible medical attention for our mother, he was looking to us to make sure that the household would remain in good shape, so that my mother would not be saddened by the chaos, which had become an everyday occurrence in our home. So, I learned how to cook when I was 12. I learned to set the table, cut fresh roses from the yard and put them in vases, and I learned to do the mundane things, to even tell my younger sisters to make sure they brushed their teeth every night.
As the degenerative disease claimed more and more of my mother's abilities and health, I, along with my father and my sisters, learned to throw parties on my mother's behalf, cook huge meals, and entertain, all so that my mother would not miss her happy and bustling household in which frequent parties were held. I think we did quite well.
We also learned to take care of my mother. We tried to do everything we could do for her, everything from massaging her aching body to handing her medication. We gradually learned to bathe her, change her clothes, feed her, and care for her. I don't know why taking care of her never felt like a chore to me. I mean, I was doing the physical work, but somehow, she never felt like a sick or disabled person, an invalid, to me. Taking care of her became an extension of our love for her, to the point where in our comings and goings into a room, for example, we also did my mother's maintenance without thinking about it. It must have been her sharp mind and the bigger-than-life presence of her soul in the middle of our lives that kept us from noticing or remembering her growing physical limitations. When I look back, all I can remember is light and lightness, laughter and immense fun in her presence. I am aware now that somewhere in between the words and the laughter, I must have brushed her hair and changed her clothes, but I can't really remember the details, they were unimportant.
Some of the best memories I have of my mother are from the mid-1980's when my father and she used to come to stay with us in the US six months of the year, spending the other six months in Iran near my other siblings. I remember one time I made an optometrist appointment for her at UC Berkeley's Optometry School. On a gorgeous spring day, she and I set out for the doctor's visit. We left my tiny cottage near downtown Berkeley to "walk" up to UC Berkeley's Optometry Clinic. To be more precise, she was in her wheelchair and I was pushing her up a steep sidewalk in Berkely. It was a serious effort, which grew harder and harder as we entered the campus and then had to navigate more and more hills, but we were talking and laughing and having a good time despite my huffing and puffing.
When we finally made it to the clinic they gave my mother a thorough eye examination, including the part where they dropped something into her eyes to make them dilate for a thorough check up, and then gave her one of those disposable paper sunglasses that are supposed to help protect the dilated eyes against bright light. The two of us then started our trip back home, this time mainly going downhill. At first I was enjoying the ease of it, remembering how hard it was to push the wheelchair up the hill. But then the hills started getting steeper, and it was a chore to control the wheelchair from taking off! Moment by moment, the wheelchair picked up speed and I had to push the emergency break a few times to slow down its momentum. My sweet mother was sitting in the wheelchair, saying nothing, but laughing to my jokes as I was struggling with the task at hand. She had her paper sunglasses on and our speed had already blown her headscarf back to her shoulders and her gorgeous curly hair, which I had dyed myself, was now in motion in the wind.
So, we went down one hill and up another and then climbed it up to the top, till finally we came to the top of the steepest one. Looking all the way to the bottom of the hill, I knew it was going to be near impossible to control the wheelchair. I looked at my mother and I couldn't see her eyes behind the paper sunglasses, but the rest of her face seemed peaceful and a smile remained dancing in the corner of her lips. I said: "Mom, are you ready for this ride?" And she simply said: "Yes." I took one more look at the open space ahead, all the way to the bottom of the hill, jumped on the back of her wheelchair to make it heavier and hopefully weigh it down some, and let it go. The moving apparatus glided down the hill and the two of us were screaming our heads off with exhilaration and joy, the wind blowing our hair and energizing our smiles. I remember laughing and I remember my mom making noises people would make on a roller coaster! We finally made it to the bottom of the hill in one piece, totally euphoric.
My mother passed away in 1996, due to complications caused by taking cortisone for years. If I must remember her illness and caring for her, this is the memory I most profoundly remember--my mother and her wheelchair, which became a toy, an extension of the two of us in celebrating how beautiful our lives were together. She never was a burden, my partner in joy, my mother.
First published here, in response to an invitation to write about caring for elderly parents.
