True currency..

That clip is kind of an explanation of one of the million things on my mind when I named this post. I think Lester Bangs is one of my favorite characters played by Philip Seymour Hoffman. He comes off like a total jerk at first but then there’s this scene and you realize that he’s pretty smart and not nearly as unfeeling as he might pretend to be.

So much on my mind right now. It’s been hard to focus everything that’s been on my mind together enough to make what I would consider a concise, worthwhile blog post so instead I haven’t been posting at all. But that isn’t good for me.. or the blog.. so instead of getting what I feel like is a neatly put together, well thought out and clever post, you are going to get desperately uncool word vomit from a hurting heart. Lucky you!

I’ve been reading a lot of my brother’s writing lately. Before he passed away I had never lost anyone that I was really close to so I didn’t have a clue of how death and grief truly worked. One of the biggest shocks to me after John passed was how losing someone in real life is so utterly unlike losing someone in the movies.I suppose that should have been self evident but it wasn’t.

In the movies people die and the people that survive them grieve, they might be sad or angry or even a little on the crazy side but eventually something happens. Something happens to make sense of the loss. And often if there was unfinished business between the dead character and the survivor there will be some sort of plot device that solves this problem. A letter the person wrote and left for the living one to find later or a journal or a video or some kind of backstory discovered through other characters all of which, while not making the person’s death ok to the one who lost them always brings them some sense of purpose or closure to the loss.

There is nothing like that in real life.. real loss. The sharpest edge of grief does get blunted with the passage of time but the person shaped hole remains. The senseless robbery of it all remains what it is.

I of course, didn’t know this when I first lost him, so my 1st inclination once I forced myself to accept the unacceptable knowledge that he was gone was to pore over all his artworks, blogs, journals, anything he had written, drawn or recorded on. I was s lunatic detective trying to piece together the reason why or way for it all to be okay again.

I now know that doesn’t exist in real life. Now, when I am reading and re-reading his writings I’m trying to create a timeline of his addiction. Trying to figure out more of what John’s story really was versus what we all led ourselves to believe it was.

So there’s that. I’m also working toward getting my weight loss surgery at Beth Israel. I just had my physical and I am going to be seeing my rheumatologist and asking him about a scooter or a power chair. Years ago when I asked him for one, he refused to prescribe it saying that I’d become dependent on it and lose my perfectly good ability to walk. I no longer have perfectly good ability to walk. I cannot straighten my back or my legs, every time I do stand and walk usually brings further injury and inflammation and also chances of falling. I really hope he will cooperate this time. I don’t know what else to do. I can’t participate in anything like this. I have very little quality of life.

I am only 38, but I have the limited existence of a much older woman. As a matter of fact, I know women close to twice my age that are more mobile, more functional, more an active part in the lives of their loved ones. I would rather be in the world using a power chair than not a part of it without one.

I’ve dealt with the difficulty up till now with a walker that has a fold down seat. It helps me get around without falling and if I need to stop and rest I have the seat there to do so. I guess my increased frustration with my lack of mobility stems from all this bad weather we have had lately. Snow and ice on the ground make it harder for my wheels to roll properly. The frigid temperatures hurt and I don’t have the ability to move through them quickly.

So I have more appointments and I have unknowns. My weight loss surgery process is slowly lumbering along. Maybe the wheelchair or power chair to come. Also, on a family level, there is this kind of will she stay or will she go thing going on with Daughter.

She moved back in when Husband got really sick, ostensibly to help me get through all the added demands of managing everything I normally do, plus Husband’s role, plus caring for Husband,etc, etc. The problem is she does the things she wants to do. Like she’ll cook which is awesome, but she resents even the smallest request to pick up after herself. I know this is because of the extremely touchy history between her and Husband. He worked her to death when I was too out of it to do what I was supposed to, or to stand up for her.

Plus we don’t have a room for her anymore. She moved out in 2013 and only in the past 6 months did Husband turn her bedroom in to his studio and give Son her bed and dresser. They are both just nondescript pine so there was no issue of Son protesting the hand-me-down. I think he secretly enjoys having things that used to be hers. When he misses her he reads all the little graffiti she wrote on there and tries to figure out all the little drawings.

As I finish this for posting I am battling some kind of allergic reaction. My lips puffed up like I’d had bad Botox and it became hard to draw a breath. I took some Benadryl and let Husband and Daughter know what was going on so in case I pass out or something else they would know what was up. I have no idea what the hell set me off.

I don’t have any medical backup for this but it seems like I’ve had quite an few allergic reactions since my splenectomy. So I’ve been through this enough times that i know that all these episodes mean staying awake after taking mass quantities of Benadryl. The waiting is weird because of the Benadryl has me sleepy and thinking weird non consecutive thoughts.

Great! I had Orange is the New Black on in the background as I typed this and now Husband is being all judgmental about my viewing choices because of Natasha Lyonne was swearing her head off the second he came in the room. I really do not need crap from him right now.


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