This is the fourth time my family – my mom, dad, husband and I – have piled in a rented minivan and burned up the interstate between New York and Kentucky. It is also the fourth time we’ve checked into one of the two hotels in this tiny no-stoplight town. This will be the fourth time I’ve seen my aunt – and my father’s side of the family – in eight months. That’s more than I’ve seen them in the last ten years.
If not for my husband, we probably wouldn’t be here. He’s been the driving force – both literally driving and figuratively pushing – in getting us here. If left to us, my family and I would be putting off these visits…we’d find excuses – no time off, too long a drive, nothing to do while we’re there, too much to do at home – and then find ourselves here only when summoned, like we were with my grandfather, by announcement of death.
My aunt was diagnosed with ALS just over 2 years ago. She went for some time without any symptoms to speak of and then – BAM – her body started slipping away. First her hands, then her arms, the disease crept up her extremities and slowly robbed her of the things she loved to do the most: keep her house, hug her grandbabies, cook huge southern dinners with too much butter and too many deep fried components. Before long, her legs started to betray her, giving out while she walked with her girlfriends, refusing to let her stand for any length of time. Before she knew it, she was confined to a wheelchair. Not that it was easy to get her to admit she needed the wheelchair. Like her father before her, and her brother after her, that side of my family is legendary in its stubbornness.
At my wedding, my aunt was walking. Today, she’s barely breathing.
When her legs started to give way, it was my husband who said we needed to visit her. See her “now, while she can enjoy you. Before she’s too far gone.” My father and my mother and I all came up with excuses. We didn’t want to bother her. We didn’t have the time off of work. We had other things planned. We were busy. Really, we were scared. We were afraid to see her slowly fading. We were afraid of it being awkward, of not knowing what to say or what to talk about. Afraid to ask how she was feeling, afraid of what was happening to her. So we buried our heads and went about our business.
And then my grandfather died. The last time I had seen him was at my wedding. My father had a plan to see him, but Paw Paw died two weeks before that plan was realized. We missed seeing him. We didn’t get to say goodbye. We waited too long to see him, and it was too late. That vacation my dad had planned to spend with my Paw Paw? He spent it tending to Paw Paw’s estate. Going through his house and looking at pictures that Paw Paw wouldn’t get to explain now. It was awful. And it was also a wakeup call. My husband had been right. What the fuck had we been waiting for?
At my grandfather’s funeral in May, my aunt’s ability to speak was showing the first signs fading. “She’s dying, Anna,” my husband told me. “We can’t wait to come back here.” He was right. My grandfather was 91 when he died; there was a time that it was a very real possibility that he would outlive his 66 year old daughter. We decided to visit again for the Fourth of July.
By July, my aunt’s ability to speak was grinding to a halt. Her brain knew what she wanted to say, but the struggle to form the words was evident. Her mouth moved too slowly, her tongue seemed fat and thick and useless. The little use she had of her hands was now limited to her fingers, and the most she could do with her legs was swing one back and forth.
“She won’t make it through the holidays,” my husband said. “We need to go back.” He couldn’t come with us, but we planned a trip in the fall. And the difference between her summer and fall self was stark. Her voice was almost entirely gone. She was waiting for a computer system that would speak for her. She used a motorized chair that she could control with the movement of her head; which was the only thing that she could move anymore.
I suppose that every time we left, I felt like it was the last time we’d see her. We’d pull out of their driveway after our week-long visit and I’d see her there – at the top of the ramp they’d had to install over the front porch of the house she’d lived in for the last fifty years; her hands helplessly limp on the arms of her chair, her face curled into honest and heartbreaking tears, her head buried in her sad husband’s belly – and I’d think, “This is it. This is the last time I will see her face. This is the last time my dad will hug his sister.”
She had a feeding tube implanted just after we left the last time. But she doesn’t want to use it. She made her husband sign a DNR. She told her children – via a letter that she had type at an excruciatingly slow pace, using a special computer program that registers the movement of her eyes over a keyboard – that while she had wanted to prolong her life as far as possible, she’d changed her mind. Because this was not a life, she said. She couldn’t hug her grandkids. She can’t fold laundry. She can’t feed or clothe herself. She can’t even talk. It’s not living, just existing.
Despite growing breathing problems, increasing pain and frustration, she had a beautiful holiday with her family. I thought of her the whole time, knowing that she knows this is probably her last Christmas.
When her hospice nurse told my cousin that they’d be lucky to have her for another four weeks, my husband once again insisted we visit.
And here we are, in a hotel room. He’s sleeping beside me, recovering from a long over-night drive. My parents are already there, at my aunt’s house, visiting her for what we all probably think is the last time.
I’m scared of what I’ll see when I see her. She’s thinner and she can’t speak and she’s hurting and she’s frustrated….and there’s this thing about someone so helpless and quiet, who looks at you with wide, frustrated eyes and an open, silent mouth; it makes you want to treat them like a child. But she’s not; her mind is sharp as it was when she was an Registered Nurse in the pediatric unit of the local hospital. It’s not that her body’s not working because her brain stopped. On the contrary, her whole body stopped working while her brain is just as good as ever. She’s a prisoner in her own body. She feels everything, but she can’t move. She hurts, but she can’t do anything about it. She knows what she wants to say, but the words won’t come out. It’s like everyone’s worse nightmare, come to life. It might be the cruelest disease imaginable.
I wonder, but I don’t know, how she feels; I’m afraid to ask her. I don’t know why. Maybe because I think it would hurt her to explain it? Maybe because I think it’s about as impolite as asking a woman her age or her weight? Maybe because I’m afraid I don’t want to know, because I can’t even imagine the depth of her sadness and hurt.
I also don’t know how my father feels. Once she’s gone, he’ll be the only one of his family left. I can’t imagine the loneliness that comes with that; your family is the only witness you have to certain parts of your life. To have them all gone, to have to carry those memories and stories and experiences all on your own now, must be terribly heavy. My heart aches when I think of what he must feel. Watching him watch her is the hardest part of being here. He looks at her like my little brother looks at me. It’s heartbreaking.
But I’m glad I get to see it. I’m glad my husband champions our coming back. I’m glad we’re not falling short on goodbyes this time. I’m glad we’re here for her; I’m glad we’re here for my daddy. I’m glad we’re here. Even if it’s scary.