Of course I can’t sleep, which isn’t really new for me, but it seems new right now. Now, the things that keep me up all night are the unknown, the terrifying, and the huge.
These are the scattered thoughts, flitting around my brain – I’ve got to get them out of I’ll explode. Well, maybe I won’t, but I know I need to talk with someone other than my wife. She’s so patient and loves me so much but she needs a break.
Maybe we all need a break, but here goes what I’m thinking about.
There are so many things.
Just. So. Much. Pandemic.
I have friends that I love dearly. DEARLY. They are in Manhattan right now (currently a hotbed for CoVID-19) & I’m so scared that I might lose them.
I have family that are immunocompromised and/or are in a higher risk age bracket. I’m terrified that I’ll lose them too.
I, myself, am immune compromised! OMG! CRAP!
People are talking about comparable periods in recent history so we have some sort of frame of reference for how to act. Some are talking about 9/11, others are talking about the Great Depression (which my parent’s lived through), but it’s really not like that. I briefly considered the Cuban Missile Crisis based on the major fear we’re all trying to live through.
But it dawns on me: the early 80’s and HIV/AIDS crisis – originally called GRID (gay-related immune deficiency) – we’ve been through this – the fear, the isolation of sick people in hospitals, not understanding what was going on, what to expect, who would be sick, and how they would become ill. The lack of available medical treatments. And the fear; all the fucking fear.
Maybe one way to get through all this is ask one of your gays who lived through this what it was like back then: we’ll tell you to stay fabulous, keep on loving, and protect you and your loved ones at all costs.
My son’s school wants us to do internet learning with him. Are they stinking crazy? I’m not going to do that with him! He’s scared too – if I’m up at 3AM with all these thoughts, I cannot imagine trying to teach my kid but I will help him to do is best and help him if he needs it. I cannot imagine doing any of this homeschooling stuff people are doing – my son’s got enough on his little plate. He’s 13 – I can’t even IMAGINE being his age and going through this. If you think for even one minute that these kids think this is some type of extended vacation, you’re wrong: these kids are as scared as we are.
Every night now, around 7PM, people around the world are going outside, clapping and shouting and making noise for all these healthcare – and other essential – workers right now. These brave people put each other in actual danger every single day that they go to work. They’re exhausted. They’re overworked. They don’t even have the proper equipment to do their jobs safely. I mean, people around the world are SEWING masks for them.
This is insane. Absolutely insane.
We don’t have enough toilet paper and we can’t find any. All of the stores are out they don’t know when they are getting more. I guess we are going to have to start sewing toilet paper too.
What are people without homes going to do?
How do they stay safe?
What about people in prisons?
\How do we keep them safe?
This is the most bizarre experience of my life. I alternate between denial and absolute terror 23 times a day.
I went grocery shopping earlier today & it’s clear that people are on their last nerve.
It took all of my mental energy to get through that.
I wore a mask and gloves when I went out, and as a woman passed me and saw my mask she said me, “You know, if you’re healthy, those masks aren’t going to do anything for you anyway.” I acted like I didn’t hear her. Maybe the mask isn’t going to help. But it isn’t hurting her.
People are scared. Let it go. Have some compassion for each other.
That’s what I say to her in my head.
Then, I realized she is under unimaginable stress too. I gave her compassion and I changed my mental response to her – I reminded myself that she’s scared too.
There’s world-wide uncertainty right now & we’re all grasping for a feeling of control. She is too; she’s scared like the rest of us.
Maybe the way she is navigating her fear is wanting to know more than other people; she needs that right now. And so I mentally forgave her because I totally understand where she is coming from.
There is a beautiful sense of solidarity happening too. I think that it’s appropriate for me to be positive and hopeful here now. People all over are jumping in and helping. Delivering food and meds to people who can’t get out. Delivering food to hospital workers who are not able to get breaks to go out and get food for themselves. People are giving out free lunches for families who depend on the schools for those meals.
It’s quite beautiful.
I am so fortunate too.
I have a roof over my head, and no threat of losing that (at least right now). I have an amazing wife that is on this journey with me, and who is solid when I need her to be.
I get to be solid when she needs me to be, and that helps me just as much. I have an amazing son who is challenging and fun and healthy. I have food in my belly and no threat of losing that.
I’m fortunate. I’m privileged. I am also grateful. I don’t take this for granted.
I do have hope. And I do believe that everyone around the world is doing their very best to take care of each other.
The following post is from a series called ” A letter to someone who stopped talking to me.” The posts from this series will appear on Stigma Fighters and Bank Back Together.
It’s been a while since I wrote you. Six months. What was the last thing I sent you? A postcard, probably. Someone – one of your sisters, my aunts – told me a while back that my letters to you went unopened. Hence the postcards: nothing for you to open (or not open), a pretty picture for you to look at, and less aching white space for me to fill each week. It made it easier – for me at least. Nothing too heavy. News from up here in the north. Family. Friends. Work. Then best wishes for your well-being and family down there.
Phone calls from me ceased when you could no longer take them. When you could no longer remain awake at the phone or even, perhaps, know who I was. You used to love texting, before illness took its final hold, but the special large screen phone we got you so you could take and make calls from your room languished unused and uncharged.
I cherish the times I came to visit with you, on my own or with Pam. The time I took you to Washington Wildfowl Trust to see the ducks. Holding your hand. Sitting with you in your room while you slept. I remember the moment (not precisely when but how it felt) when the question “When will I go down next?” shifted into the knowledge I would not.
And then the phone call telling me you’d gone. A week or two of uncertainty, doubt, fear. Then plans to be made. Hotel rooms and a hire car. Routes. What to wear. That was okay. I’m good with that stuff.
And then there I was, back in Liverpool one last time. Squeezed in the back of the funeral car. Your face staring at me all the way to the church from the framed photo they’d propped at the back of the hearse. Carrying your coffin – no weight at all really – up the aisle of the church I remembered so well. The priest’s eulogy. “She was a saint. Literally, a saint. She always put others first.” And I wanted to scream.
YES SHE WAS. SHE DID. AND LOOK WHAT IT FUCKING DID TO HER.
I didn’t scream out, of course. I stayed quiet in my seat. I own my share of the blame. The depth of your need terrified me and I left you to get on with it all. I wasn’t there when you needed me to be. It was easier to pretend I didn’t notice. To visit occasionally and then not at all. To phone occasionally and then not at all. To write letters, and then postcards, that said very little and needed no reply. I’ve learned a lot about being there these past years but too late for you and me. There is no going back but I would do better by you now.
I don’t believe these words will find you now any more than the postcards did. You are gone. Not gone somewhere. Just – gone. But there are tears in my eyes and perhaps that stands for something.
Being a caregiver to a loved one is one of the most gut-wrenching things a person has to do.
This is her story:
I’ve been contemplating blogging for quite sometime. I’ve been afraid to for several reasons, but to rattle off a few: anonymity, vulnerability, and pure avoidance. I have a fear that if I actually put the feelings/circumstances/questions out there, it means I actually have to deal with them. Thank you Aunt Becky for starting this blog…so I can get my toes wet.
From what I can tell of this space, many are dealing with loss, mostly stemming from the unfathomable experiences associated with childbearing/loss/postpartum/depression and the host of other issues those of us who are now “adults” face. I would like to add another sad layer to party – dealing with caring for someone whose mind and spirit are being slowly ripped away through Alzheimer’s Disease.
My mother, the beautiful, talented, smart, amazing hero of my world, is slipping away. I cannot say things like…she has had a full life, this is part of getting older etc. You see, she’s only 61 years old. We are at least 5 years into this battle (it took most of those 5 years just to get a diagnosis) and it feels like this freight train is traveling full force. Every day, for my mom, is the best it will ever be. Tomorrow, some different aspect of the person she is today will be gone. For now, she knows me, she knows my kids, she know she is my mom. She doesn’t remember where she lives, when the last time she talked to me was, whether or not she fed the dog (yes, at least 5 times now) or how old the kids are, let alone that she just told me the same story for the tenth time in a single conversation. It can be so frustrating, but I have to constantly remind myself…today is as good as it gets.
I need an outlet…and hope this can be one. Caregiving, whether its for an infant, child, spouse, sibling or parent, means giving more of ourselves than we ever thought we could give.
And that comes at a price. I look to you, fellow fighters, for insight, laughs and support. I promise to give it all back.
Four years. Four years later. And still I struggle. Not every day. But enough.
The reminders that won’t let me forget.
Seeing my daughter doing the things my son should have been doing four years ago. Climbing, running, not needing to hold the walls to walk down the hallway as he did at the end.
The surgical scar on the back of my son’s neck echoed in the scar on my soul.
The checkups, though now yearly, renew my fears… what if…
When does this end? When do I get closure?
When it’s been five years since the tumor was successfully removed? When my son gets to go to prom like the diagnosing neurologist essentially promised us? Or goes to college? Gets his first job? Gets married? Has kids of his own?
Do I get closure? Or is closure bullshit?
Yes, it does get easier. Yes, I’ve gone on with my life. But some days (most days?) I’m not convinced it’ll ever really be over, that the door on this chapter of my life will ever really close. Rather I feel that this chapter is just beginning and it’s a long one.
I try to console myself, thinking it’s okay to feel this way, that it never ends. I can be okay with that. Right?
And yet… And so… this is where I am left… my son is alive and well. Why can’t I let go of the past?
My daughter just got home from school and asked me what was wrong. I told her “I don’t feel good” but I can’t really pin down what’s wrong or why I don’t feel good.
Ever since this morning, I’ve been so out of it. Just doing a sink full of dishes seemed like it took a huge effort. I managed to haul the laundry to the laundromat. I plugged earplugs into my Blackberry, which I shoved into my pocket. I wasn’t listening to anything, but I didn’t want anyone to look at me, let alone talk to me.
I feel like this cloud is surrounding me. I can see glimpses of the sun at times, but it doesn’t last. Or it’s like I’m treading water. I’m doing what it takes to survive, but not much more.
The only thing that feels good is if I am alone, wrapped in a blanket or in bed. I go through the motions for my husband and daughter. Mostly because I know they won’t understand. And how do I explain how I feel when I don’t even know myself?
Maybe it’s the depression… maybe I need a different medication. Maybe it’s hormones. My period is due any day now, and I already know my hormones are all kinds of screwed up.
I feel alone when I feel like this. I want to talk to someone, but I don’t know who will understand. Who will “get it”. Who won’t just think it’s all in my head?
In the meantime, I try to move forward. I try to keep going through the motions.
nugget daddy and her grandmamie brought nugget to my hospital room to get ready for trick-or-treating. she was, of course, beyond adorable in her tinker bell dress and wings, sparkly green tinker bell shoes, tinker bell wand, and ballet pink tights. i pulled her tiny tresses up into the best tink-like puff i could manage, fluffed it up with plenty of hairspray and added a clip with tiny white flowers. she politely shrieked, “dada! dada!” and beamed with pride as she was showered in nugget daddy’s hair product. what, you didn’t think it was mine, did you?
then we selected where she wanted her green star stamps placed and where best the pink star stamps were suited for. earlier, i ‘d done a sample patch of each color on each of my cheeks so she could see how they both looked.
then we applied a very liberal dusting of pixie dust. i should have gotten her some “pixie dust” glitter of her own to keep in her “berry bucket” for dousing unsuspecting passers-by. ah well, there’s always next year!
we made a few rounds though the halls to the different nurses’ stations. nugget was heartbreakingly cute and insisted on holding my hand, always unsure of how to navigate around all the wires attached to her mama. i told her it was almost time to go to the mall for more trick-or-treating and that her grandmamie would be getting her the tinker bell movie while they were there.
we said our goodbyes and i swear, i just couldn’t get enough hugs or kisses from my sweet baby girl. i watched as they made their way down the hall, all the while nugget was cheerfully waving goodbye, happy as a clam, all pixied-up and ready for more candy collecting.
i stepped back into my room just as the tears started rolling down my face. i tried to sob silently for my own selfish sadness.
i hoped she was having the time of her life, holding out her fat little felt flower bag – surely that’s what fairies collect halloween candy in – and squealing with delight with the acquisition of each new piece of candy. she had oh-so-politely signed “thank you” for each treat she’d collected from the nurses and i hoped that trend was continuing at the mall. i’m so very proud of my little tinklet.
i hope i can get out of here this weekend in time for the good post-pumpkin day costume sales at the disney store and old navy. otherwise, i might have to send someone armed with a fully charged cell phone and a whole lot of patience on my behalf!