May 26, 2016 by Amy

Thursdays

Thursdays have been my Monday lately. Thursdays used to be my Saturday, but for the past month-plus, they are definitely Mondays.

Thursdays used to be my favorite day because of doughnuts, dress downs, and patty melts. I am a simple woman with simple pleasures. And then Thursdays consistently blew up.

It was Thursday when I found out my dad had lung cancer.

It was Thursday when I blew up my family.

It was Thursday when I realized that a week after surgery to treat the lung cancer, Daddy was still in the ICU and I still hadn’t heard him speak or laugh.

It was Thursday when the doctors did an MRI on his brain and found “something.”

I know these Thursdays because of how you remember exactly where you are when catastrophe strikes. My mother remembers (well, she used to remember) where she was when Kennedy was shot. I remember where I was when Challenger blew up, and when the twin towers fell down. I remember who was around me, how I felt, how other people reacted.

Every Thursday night I’m with my writing group. This small band of diverse people gather each week to write, to bounce ideas off each other, to celebrate victories (submissions, acceptances, the finishing of first drafts, new story ideas)…to be writerly. I was thrilled when one of them invited me to join, as this is the sort of group I’ve been longing for my whole writing life. What I didn’t realize was that this little band of writers are now much more than just the people who give me good synonyms and encourage me to keep writing.

They give me real support, the kind that goes well beyond writing.

I know this because when my life blows up each Thursday night, I am with them. And they immediately give me hugs. There is no judgment, there are no questions. Just loving concern. I sit at my computer and then I start crying and they kindly ignore me until I look up, shaking, and make eye contact and they realize I’m about ready to bolt or lose my shit or, quite possibly, both at the same time.

The hugs are the good kind. The kind that are tight and long and unrelenting. The kind that say, “I have you. You are safe, at least for this moment. I get it.”

The first time this happened I wasn’t prepared. I wasn’t prepared for these people to give so much of themselves, so much of their own humanity. Our conversations around the writing table are typically pretty light-hearted. I inevitably end up laughing and feeling so thankful that I was invited into this little community where the topics are wide-ranging and I learn something new each week. I considered this group my friends, definitely, but they were segmented into my “writing friends” group. Not my “cry my heart out friends” group. (I have those, too, but I don’t get to see them the same night each week, although I should because that would be awesome.)

Then one Thursday night all my fears and emotions about my mother’s Alzheimer’s came tumbling out, manifesting themselves awkwardly in public through my tear ducts. I stood up to bolt, because no one wants to bawl their eyes out in the local coffee house. I was cramming my belongings back into my backpack when one of my writer friends stood up, too, and wrapped me in a giant bear hug. All he said was, “I know.” And I remembered that his mother has Alzheimer’s and that he cared for her until he couldn’t anymore and that he visits her all the time in the facility that now cares for her better than he can. And I knew that he knows exactly how I feel and that I am not alone, despite feeling that way most of the time. Why do I forget I’m not the only person to go through this? Why do I think that I should hide my feelings about this because no one would understand? That’s the sort of garbage thinking that derails me completely. Left to its own devices, my brain will spin and spin, gaining in speed and destruction. It takes someone who has been there, reaching out to stop the escalation and still the spin, to get me back on track. It takes someone who knows the wide range of ever-changing emotions that comes with having a loved one with Alzheimer’s. It takes someone who can say only, “I know” and have it mean worlds. Only then can I slow down, stop, and remember that I am not alone, that there is a path through. It may not be the same path, but it’s a journey that none of us has to take alone.

I’ve written a lot over the past couple of weeks, and it has helped me feel better even though I know it’ll never be published anywhere. It’s been too dark here, though, even though the dark is sometimes comforting. I need my presence here, even while I want to hide under the covers.

Daddy’s surgery was almost two weeks ago. The surgery went fine. All the stuff after – the stuff that’s supposed to be the recovery – hasn’t gone well. At all. It took over a week and half to hear him talk. I miss his laugh. I miss his ever-present concern over our well being. Instead, I’ve seen him in conditions that I will never forget, and that will always make me cry.

They don’t know what’s going on. At first, he was aggressive when they feathered off his sedation. They don’t know why he woke up once and, even with restraints, managed to yank out his IV, his NG tube, and his chest tube. The nurses finally got him subdued and tightened his restraints and, I imagine, gave him something that knocked him on his ass for his own good.

It’s not supposed to be going like this. He’s actually supposed to be home now, grouchy but whole. He’s supposed to be grimacing as he sits up and doing his breathing exercises and setting up follow-up appointments. He’s not supposed to be still incoherent at best, and unconscious at worst.

Mom knows what’s going on, generally. She doesn’t understand why he’s not home yet, which is perfectly normal because we don’t understand, either. She forgets that she’s already been to see him today. She cries because she misses him. We all cry because we miss him.

I think perhaps the hardest part is the unknown. We don’t know what’s wrong. So we don’t know how to fix it. We don’t know when it’ll be right again.

Sometimes I’m able to step outside my reality, and look at it objectively. That’s the woman whose dad is in critical condition. That’s the woman whose father has been in the surgical ICU for almost two weeks. How sad that must be for her. I wonder what’s going to happen? I wonder how she’s dealing with that? I think I’m able to do this mostly because some part of me just can’t believe that this is what is actually happening. At work, one day last week, colleagues started showing up in my office. “I’m so sorry about your dad and mom. I had no idea.” Over and over. I realized that someone must have sent out an email. It was touching and weird all at the same time, because I have been on those emails, have felt bad for the subject of those emails, have wondered how that person is coping with so much tragedy all at once. That’s when I could step outside my reality and look at myself clinically, as someone else. That poor woman whose world is crashing around her.

My sister and I take turns breaking down and building each other up. We text and email a lot during the day. She calls me with updates after she talks to the ICU nurses. She tells me over and over that I can call them myself and get updates, but I don’t know what to say to the nurses, or how to understand what they tell me. She has the medical background. She asks questions in that special code of medical language that I can’t decipher, the code that tells her volumes through data. She gets his temperature (the highs and lows). She checks on his oxygen, on his heart rate. She knows what all the different medications are that they’re trying, and what their dosages mean. She knows which is a sedative and which is for fever and which are his normal medications that he takes on a daily basis. She takes in all those terms, all those numbers and knows if he’s doing better today than he was yesterday. I say only, “What’s going on? Is he better? Have you fixed him? Why can’t you fix him?”

When the nurses answer my sister, they speak in that shared, common language. When the nurses speak with me, they speak in the dumbed-down language that they reserve for the Muggles of the medical world. “He’s doing a bit better today! Just wait, one of these days it’ll be like flipping a switch and he’ll be back to himself!” They are kind and professional and caring to both of us.

He has started coming back to us, slowly. He started speaking yesterday. When I visited him this afternoon, I couldn’t understand much of what he was saying. He wasn’t too responsive to me, and I realized that I wasn’t speaking loud enough. The nurse bustled around, belting out questions and getting crisp responses from him. I went to leave and spoke loudly, like she did. It felt like shouting to me. “Daddy! I’m leaving now but I will be back tomorrow. I love you!” He opened his eyes, puckered his lips, and gave me a kiss. He said, “I love you.” My heart soared and everything inside stilled and the universe tilted a little bit back towards center. And I realized that I will never again take it for granted when he says, “I love you.” I will remember when he asks me, for the fifth time, “Did you lock your doors? Did you close the garage?” he is really saying, “I want you to be safe because I love you.”

This Thursday was good. I am moved into a new office at work and today felt settled there. (Maintenance hung my pictures yesterday, which always makes it feel like home.) I had a wonderful end-of-the-year lunch with colleagues after an end-of-the-year plenary faculty meeting where five of my peers were recognized for being amazing people. There were doughnuts in the faculty lounge this morning. The rain stopped and the sun came out and Daddy said, “I love you.”

I’m sitting here with a group of writers, some of us writing and some of us talking about writing, and nothing is blowing up. When I arrived tonight, anxious because of how the past Thursdays have gone, two of my writer friends immediately looked me in the eye and asked how things are going. I relaxed, and said, “Much better, thanks.”

And then I sat down and started writing.

#alzheimer's#blog#daily life#family#fear#personal essay#writing