Sunday, August 25, 2024

Still

 It took the Barren 16 days to clear the virus....16 days of sleeping on a couch for me, 16 days of fretting and worrying, but we got through it and he even had a consult with a doctor about removing his gall bladder and in the end decided to keep it for now.

Meanwhile my parents have refused any and all assistance my brother or I offer to them directly. I say this because I still book and confirm all my fathers appointments "behind the scenes", so he is prepared for each appointment. He has started seeing a psychologist,  and my mother has pinned floppy hopes that it will "help him". I have become far more jaded and based on what he has refused to do ANY homework/self-work for all his occupational, speech and physical therapies...I would be VERY surprised if he creates the opportunity for himself to grow...but I would love to be surprised.

My relationship with my parents has been altered in a significant way. In fact I described it to The Barren the other day like this: it is like I have lost both my parents, but they are still here and I am left watching it all disappear each day in a new way. Like an extended period of grief and mourning. It breaks my heart in new and different ways every time I call them. 

Yesterday I acted impulsively and decided to drive the 40 minutes to their place and offer a CPAP pillow I had sourced for my father thinking that it might make it more comfortable for him and then he would wear his CPAP longer than just a couple hours a night. I hadn't seen my parents in well over a month and when I arrived and knocked on the door; it swung open with great force and my father was standing there, without a cane or walker hunched over and glaring at me. Then said hello, looked at the pillow in my hand and said what brings you here? I said I had gotten this for you to try...I was..., before I could even finish my short sentence he responded...NO, DON'T NEED IT. (he said these words in a short, loud and stern way) I started to show him the features of the pillow and again he said "no, I will not use it. Thanks though" and that was that. Like we didn't say much else after that.

My mother, peeped around the corner, said it looked like a comfortable pillow and that she was sorry he turned it down. I was interrupting their dinner that my father was microwaving. I had not even entered the house yet... I was standing on the front porch still...

I left them to their dinner and got back into my car....I felt so much. I felt so...I was glad I had invested so much in my fathers recovery, but it was like a neon sign that I was far more invested in his recovery than anyone else. That is where I am trying to heal from right now.

When The Barren asked how the visit went I said "Abruptly" 

I am struggling to get past all the trauma of the past three months. It has left me numb and uninspired and fumbling to find myself again. I have developed a new side effect, I am not sure if it is from the new infusion medication or stress but I am now learning about Burning Mouth Syndrome

I feel like I am falling apart; all my seams have come undone and I do my best daily to wake up and focus on anything other than everything else. My therapist use to refer to it as the " chop wood carry water" of life. Picking yourself up and doing tasks in an effort to keep moving and giving yourself time to do everything else that needs to be done so you have space to work on yourself and your thoughts.

The Barren is at his annual music week away for the summer and is having an amazing time. I am so excited he has this time. He is with his bestie and they are learning all sorts of new techniques and music theory from the best of the best. I literally could not be happier or more proud of him for taking this time for himself.

I am home solo trying to pretend I am at an artist residency....and make something. 

I have put film into several cameras and have shot some images...I have made some green developers and I hope to see if the pinhole photos I took today created any images. I have been feeding myself clean food, I have participated in a community garage sale, but only for an hour and a half, as the people who started coming freaked me out...hahah I have been writing down ideas and contemplating new materials. I am catching up on admin work for my website, etsy shop and wrote a newsletter announcing what the latest was.

I guess the whole reason for this post is that I am still here. 

I still have not gotten the virus, I still mask in most public spaces, even with glares. I am still waking up with a smile each day, even when my whole world is tilted and new things seem to gather around the edges. I still have a sense of hope that one day I will be able to travel again and feel lighter in mind and mood.

I do hope that if you got to the end of this post that you are doing alright, holding on to the edge of your day...finding something sparkling in it....because that little bright thing is meant for your to notice and hold.

3 comments:

Mali said...

I love your last comment. Finding and noticing and appreciating those little things brings me so much joy. It keeps me going. I love that you are feeling that too, and I love that you are still waking up with a smile each day. Enjoy your peace and quiet this week!

The swap between being a parents' child, and becoming their ... in essence ... parent, is really hard. And yes, as you said, there is so much loss involved. I wonder, with your dad's accident and diagnosis, if he is having personality changes? That is common with dementia patients, and especially in men. I'm so sorry that your thoughtfulness was rebuffed so easily. And that your mother is in denial. It all sucks, and I'm sending hugs.

I'm really sorry about the burning mouth syndrome too. It doesn't sound dissimilar to atypical trigeminal neuralgia (which I have) which is burning of the TN nerve, and I feel it in my cheek, at times excruciatingly. I have a medication now that pretty much keeps it under control, and I see (through Dr Google) that the medications they recommend are all used for TN too. Just a thought worth talking to your Dr about.

Lollipop Goldstein said...

I am doing okay, but you sound like you need a big hug. I love that quote in the beginning because it's so true. You are someone who needs love, too. And we are out here for you as you navigate this really impossibly hard situation.

Infertile Phoenix said...

I am so glad you are still here. Thank you for posting. I'm glad you remain covid-free and that the Barren is well again and got to go to his annual music week.

I am very sorry to read about the changes in your parents. Recently, I've been thinking about how I'd love to hang out with my parents when they were in their mid-40s... But that's impossible. It's my turn for the mid-40s and it's their turn for the early to mid-70s. And, yes, there are personality changes, and, yes, I'd be lying if I said I'm having an easy time with the changes.

You might feel like you're falling apart, but it sounds like you are still functioning. You are doing so well, in general, but especially with what has been on your plate for the last several months. I like your idea of looking for something sparkling. I live by the philosophy of enjoying the little things. Otherwise, my thoughts, feelings, and existence would get stuck in the muck.

Abiding with you <3