What does it mean when the rest of your life may be measured in weeks? My brain tumor is growing. I am in hospice care. I am surrounded, constantly, by family and friends.
There are too many acts of kindness to report. People send me meals, cookies, and delicious treats from Charleston and all over the country. I receive prayers and poems. There are volunteers teaching Maybelle to ride a bike, because I can’t. Maybelle, Brian, and I have more loving offers of support than we can possibly accept.
Of course, I know what’s up. All this amazing generosity is, sadly, another sign of my imminent death. How can I exist in this place, where I’m so grateful and so sad?
I am awake while everyone else is asleep, asleep while everyone else is awake. I am now slurring my words when tired. The right side of my body only rarely obeys my commands. I have limited vision in my right eye. I can only leave my bed because I have a wheelchair.
I am a tenured full professor who can’t pee without help. A scholar of feminist disability studies who now lives in disability’s embrace.
In a future that may only be days away, I will lose the ability to communicate before losing the ability to live. For now, my constant failures to understand and to make meaning are signs of things to come. The simplest conversation drags on as I struggle to find the right words. Dictating the first draft of this column took two hours, as my mother patiently typed.
Little by little, I’m learning that who I thought I was is sliding away. I’m sitting at the table holding coffee someone else made for me. Someone else is feeding Maybelle, putting her lunch together, getting her dressed and ready for summer camp. I’m just sitting there, no longer the mother helping Maybelle prepare for her day.
It just feels like today’s “me” isn’t the “me” I’ve always known. Everything is completely different now.
We had been planning to go to Disney World in July. Our friends and family had worked for months to make sure the vacation would be perfect. When it became evident that I wasn’t going to be able to take that trip, we cancelled it.
What my friends did instead was create their own Disney Princess Party for Maybelle. While I was sleeping, because I was so tired, those friends prepared our house. A dozen adults and kids had tiaras, make-up, wigs, costumes, glitter. The afternoon was entirely focused on Maybelle.
When I woke up, the party began. It was amazing. I cried a fair amount. After the party I went back to bed.
It was the first princess party for Maybelle, and it was wonderful in every way. On that day, I didn’t say a single negative thing about princes, princesses, or Disney movies.
I am happy, so happy, to have experienced a princess party. I am so sorry there won’t be more of them for me, if only because I would never turn down the chance to experience the pure joy of my daughter singing “Let It Go” over and over.
I hope this won’t be my last column. Perhaps, though, knowing that it might be is a gift I should accept.
Because I should not go without saying thank you to all those whose caring has sustained me and whose kind words have created many moments of joy and beauty. Even as I feel myself slipping away, I know that Maybelle will be held up, supported for the rest of her life by a community’s love more deep, more powerful, more transcendent than any I could supply.
Thanks for publishing my column over these years, Chris Haire. You are one kick-ass writer and editor.
To my brothers, parents, friends, teachers, students, co-workers, lovers, and readers, I ask forgiveness for anything I’ve done to hurt you. Thank you for my beautiful life.
If there’s a heaven, or whatever, I’ll see you there.