I’m laying on my daughter’s trundle bed mattress in my walk in closet. Yes, the closet is big enough to store the old single mattress. I thought it was a fitting moment to lay it on the floor and close the door for my breakdown. It is raining outside. I can hear the rain on the roof. This closet is freaking silent! I should sleep in here, seriously! A/C vent is blowing on me. It’s cozy and silent. No one can hear my cry breakdown. This is good. It’s a good thing. I need to be alone. I am alone. Aren’t we all. Just alone in whatever it is we are going through. I went to facebook to look to someone, for some to reach out to, but it was all “Hey look at me” and I switched over to my blog. I looked at my followers and was deeply upset to find amidst my gems there were some rotten ones. I have porn people and child porn people following my blog. What in the hell!!! So I blocked them, I think, if you can do that on blogs. One of my followers asked if I wanted to pay him to reblog a post for fifty dollars. Are you kidding me. Pay another blogger to repost my blog. Then someone else was asking for money to support writing her blog. So I got even more upset and came here. In this quiet space. Money to write a blog. Money…to ….write…..a ……blog. I’ve seen people asking for money for just about everything but not to post a blog post once a week. But this is what has led me to my closet floor. Unless you have IT, whatever IT is, then you won’t get what you need. Be it money, the most funded disease, the most worthy cause, if you don’t hashtag christian or whatever the right hashtag is then you are just …what? I just read a blog that had 700 likes because it was hashtaged christian. And the content? Open your bible, you can get it right there. What do people want? Why do 700 people support one person but that mother whose baby died only gets a few likes and a few followers. Why do they choose and leave those who are empty to stay empty when they could build them up. Hey don’t get me wrong. I’m a christian. But I am also a supporter of any faith, gender, blah blah blah. I don’t discriminate nor follow based on a hashtag. I read blogs daily but I have not for the last week. I can’t. My brain cannot compute any more input. I can give compassion and reading to one blog a day. That’s all I can do now.
Why am I really in my closet. Because I know that my body is disintegrating, falling apart, wasting away. My vision is poor, my joints are poor, my bones and muscles we already know are hollow. So what about palliative care for me? If I had cancer I would be getting a ton of palliative care. It’s true. I worked for hospice. I know! Because they should get palliative care. Which means comfort care. But what of those like me who have not been a time frame. What of those like me who just have to watch myself disappear. I don’t get PT or massage or medications to easy my pain because all of that cost MONEY. Hospice is free. Lets see. The dentist just told me that I have some sort of displaced disc in my jaw. It could use massage and PT and that could help my trigemenal neuralgia. Insurance doesn’t cover it. I also need a mouth splint. Insurance doesnt cover that. Well for my muscle disease I could use massage twice a week. Guess how much that is. And then aquatic therapy. Hahahahaha. Like that can happen. Then there is a question of my pain. Well I have bone pain, nerve pain, joint pain, muscle pain. I’d love to get acupuncture but at 80 a pop that won’t happen. That doesn’t even take into consideration my mental and emotional health. Just to pay someone to teach me coping skills is not cheap. Comfort care is not cheap. But who am I kidding, I cant drive to all of those appointments anyway? Who is going to drive me to 2 apts a week??!!! I can tell you noone has offered. It falls on my husband. He can only do so much. The an has a job!
So NO I’m not paying for my blogs to be reblogged and I’m damn sure not paying anyone else to write their blog. Do these people not know how desperate others are for…..more important things than paying for a blog repost??????
Go on a vacation someone said. Really? You gonna pay for it? And where can I go that is wheelchair accessible and has non-fabric softener rooms. Oh and I cannot drive so how will I get there? How will I then get food.
Don’t throw out bullshit statements like you need a vacation!
Then my hair breaks off, falls out, and my hair dresser quits same day. No biggie. Just hair right. I write a blog about it. Lets go all be empowering and get a cool punk hair cut. Oh no. Already comments, oooh don’t get a pixie cut…just get a trim…just let it grow out…don’t go crazy and buz your head. Comment after comment. Not one fucking person said I am so sorry your hair fell out, are you ok? Because no one asks if I am ok, ever. Well except my husband who just opened the closet door to check on me. You know, his wife in the closet. But back to my hair. Why does it matter. Why would it make me crazy if I took clippers and buzzed my hair. Why are women labeled. Why can’t we cut our own hair if it falls out if that makes us feel empowered. I mean. Who is it really hurting. People can throw out the comments but not one fucking person has offered to come and get me and take me to get my hair cut. NOT ONE. So I went to the dentist today with five thousand, maybe less, clips and bobbypins holding all the crazy hair down.
For fucks sake does anyone have compassion anymore? I already feel the questions around posting this because god forbid anyone ever really show their true self and true struggles !…ohh are they broke….do they need money….this is not about how much money we do or do not have. This is about the fact that my body is, as I have been told over and over again, wasting away, and it would cost thousands and thousands of dollars to get me even close to be comfortable. Not even taking into account that I have to take care of my daughter by myself most of the time with a body that hurts to brush my own hair. Oh my hair fell out. But God forbid I get a pixie cut.
My dear diary, I am writing to you because i feel that not one person would hear my words right now and give me what I need. Just love. So I am going to lay in my closet where it is quiet until I can draw upon my own love I have within myself to finally emerge from here. I actually have a lot to keep me company. I have very little clothing. Minimalist in that aspect. Shelves are full of plastic bins that have my daughter and my diaries books. We used to write to each other every night and then reply each morning. We’d draw pictures and write poems and stories. Maybe I will read those to distract me. Because I have no pain management. And when your body wastes it is extremely painful. Lyme disease, muscle diseases, trigemenal neuralgia, all this facial pain, extremely painful, but no one gets it. No one asks. I had to tell the dentist that my don’t touch me sign is because I have pain and don’t want to be pat. No one has any clue how much pain I am in. No one. No one asks. No palliative care for me. Closet therapy. That’s what it has come down to. God I feel like if I put this on my blog my family will read and and judge me, say I’m crazy, say I could have had them had I just shut my mouth, say I deserve it….they will. Make no mistake, my family, if I publish this, will snicker to themselves. That’s where I was first introduced to lack of compassion. But you know what. Fuck it. I’m putting it out there. No hashtags. Just me. This is me. This is where I am. In my closet. Crying by myself because this is the point I have reached in my life. I guess, if you could gain any insight from what I have written, I hope you gain that compassion goes a long way….especially if you aren’t getting any.
My view from the floor…see…cozy…if you happen to be laying in a closet…