Starving for Sisterly Conversation | Part 3 of 3
January 9, 1996, 9:00pm, Philadelphia
The phone rings. Hi. It’s Diane. I’m not well – no easy way to tell you – not post-polio, but ALS – I’m going to need help, a lot of help. I hang up and go downstairs, weeping as I tell my family the news.
January 30, 1996, late afternoon, Houston
I walk off the plane and see Diane standing in front of a pillar. Small floral print on navy dress, empire waist and smocked bodice – ivory stockings – very pretty – gold chains – hair highlights in blond – stoop-shouldered and slow. I don’t want to stop hugging her.
Diane uses her good right arm to guide me slowly and firmly through the airport. Son #2 is with her; tall, healthy, quiet, just accepted into a college program. He takes my luggage. We get to the car. Diane drives, using her good right arm.
Diane is in charge, I’m not
It’s late; Diane has a clear agenda for the evening.
Diane drives to the church where she’s Minister of Christian Education and Administration.
- We tour the new building; Diane provides commentary about several glitches and how they got resolved. She managed the team that oversaw the new building project and dealt directly with the architects. She’s especially pleased with the Early Childhood Education Center—bright, cheery, spacious, full of child-size furniture, toys, games, play stations and books.
- Diane shows me her office space—simple, functional, in a quiet corner of the church staff suite. She enjoys demonstrating the way the door on the staff restroom was hung for easy access—hers!
- She introduces her administrative assistant, the pastor and his new associate, and the church staff. They love and respect Diane. They can’t imagine life without her cheerful, can-do attitude and creative hilarious pranks. I tear up a bit.
Back in the car, Diane updates me about her health.
- She’s been dealing with minor and major adjustments for the last few years such as losing the ability to button her clothes, stumbling, and losing almost all the small strength she had regained in her left arm.
- She’s relieved to know what’s going on. ‘I sleep better than I did when I didn’t know what I was dealing with and the doctor couldn’t yet pinpoint the cause of my escalating symptoms.’ ALS always gets ruled out until the very end.
- She’s not scared for herself. She’ll deal with that when the time comes, if it does. ‘I am, though, scared for my children and my husband.’
- She doesn’t know how much longer she’ll be able to work.
- Right now she has minimal lung and respiratory dysfunction.
- She has significant loss of muscle strength in her arms, hands and feet. ‘I can barely write and can’t use my old computer mouse. I won’t be able to drive much longer.’
- She’s a night person, but says ‘I’m getting up early so my husband can help me dress before he leaves for work.’
Diane drives to her daughter’s school and parks the car.
- She leads the way toward the gym.
- Her daughter is on the girls’ basketball team; they’re playing tonight.
- Daughter is strong, healthy and happy to see her mother.
- Husband arrives to join us, also looking strong and healthy. He’s concerned for Diane. After the game he gets in his car, then gets out after a few minutes. He walks back to make sure Diane is OK; it seems she’s taking a longer time than usual leaving the parking lot. I tear up.
- Seeing Diane’s husband, second-born son, and third-born daughter underscores Diane’s physical frailty. Even though she’s still taller than I am and looks OK, her body is under siege from within, not from without.
Diane stops at a take-out restaurant for supper.
- We go in and pick out what we’d like to have for family supper. Most family meals are now at restaurants or from take-outs.
- When Diane pays for dinner, she has a hard time putting bills into her wallet with one hand. If she needs help, she’ll ask me. Her left arm dangles. I want to hold it. I wonder what she would think if I did just that. I restrain myself.
Home for supper and a little tour of the house
- I meet the family dogs—lively, fun for Diane and everyone else. A good focus for conversation and gaiety.
- We sit around the kitchen table for supper. I feel awkward and unsure of myself. I can’t remember who said table grace.
- The dogs don’t disappear. They seem eager to be seen and attended to. They feel like helpers sent to ease the way–at least for me if not for others.
- Diane’s husband cuts up her food. He’s sitting next to her. Small bites, easy to chew and swallow.
- I report on all family members and myself, ask questions and enjoy getting to know the ever-present yappy, happy, attention-seeking dogs.
- After supper I get a tour of the house. Diane and her husband designed it to accommodate post-polio syndrome. It’s large, all on one floor. Easy access from outside; wheelchair space almost everywhere. They’ll need to make a few changes in the master bathroom, but the basic floor plan is workable for ALS.
- One notable feature: the formal dining room has a pool table in place of a dining table. It gets plenty of action. All meals are in the kitchen or the living room.
By now it’s way past my bedtime. I’m so tired I can hardly think. I don’t want to forget anything. I note bits and pieces in my journal, including an observation that Diane talks readily about crying and falling part—and was clearly in talk mode this evening.
Sister #2 will arrive tomorrow afternoon; she decided to join us for several days. I note a few things I want to ask Diane tomorrow morning. I’m hungry for time alone with Diane.
I’m still hungry for conversation with Diane
I didn’t expect this—even though my dream in 2012 suggests it. I’m getting ideas about new ways to connect with Diane while becoming more connected with myself.
I don’t like voices in the dream that distract or try to discourage me. I consider engaging one of them in conversation. I love that we’re in the bedroom, sitting on the bed, listening to someone talk about food and health for women, and that there’s food and even a kitchen counter in the bedroom.
I also see things to like in myself–clarity, determination, my voice, gratitude, compassion, deliberation, and a plan to remember Diane with food. I even like the simple meal I’m preparing to eat in honor of her contributions to my life.
During the ten years Diane lived with ALS, we had multiple sisterly conversations about real life. It was more than enough—more than I ever thought I would experience with her. And it was never enough. I always left hungry for more.
When Diane couldn’t speak or control what appeared on her computer screen via body movement and electronic tools, conversation became laborious. Only eye signals worked–one letter and one key word at a time. Sometimes Diane had questions or topics she wanted me to talk about. Sometimes she just wanted me to sit with her or get her nurse or a family member to come. Diane was in charge. My job was follow her lead.
So I’m going to do just that as part of this blog. In addition to my own journals, a few written pieces about Diane and notes from here and there, I have a set of short pieces. Diane wrote them using computer-assisted devices that translated hand or head movements into on-screen text. More than enough to suggest an agenda.
I’m not sure what form this will take, but watch for pieces from time to time. I just need to follow Diane’s lead.
© Elouise Renich Fraser, 10 July 2014