Elle Rose
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Photo dump: me on my day ventilator
🕑 Added 2023-01-26 04:51:36 +0000 UTCI've been feeling a deep sort of calm happy feeling lately.
What if, everything works out? What does that even mean? Is the fact that I'm alive right now proof that everything is already working out?
I have one of those people who doesn't believe bad or tragic things happen for a reason… I couldn't get through the show Ozark but there are some lines where the main character expresses that sometimes shit just happens in life and there is no Real reason, it's just shitty. And we have to overcome it. Or else we are perceived by ourselves and others as failures. Selfish. We say God protect us from something if we narrowly escaped it, and we say god is merciful if instead of escaping death we succumb to it. Either way, we have no control ultimately.
We also have no control over the good things. When somebody comes along or seems to manifest out of the blue, out of our own blues sometimes, out of a long numb era when we succeeded in blocking out the pain but perhaps also blocked out the pleasure of opening again to the feeling of being loved. This internal Battle, I don't deserve the same kind of love for instance as an able bodied Woman who can use her body and so many ways that I can't. Is a disabled life Worth living till the end? Am I worth something? In these moments when these pictures were taken, I felt worth it. I know there are going to be times when I don't feel like that, and I'm going to remind myself with these pictures how content and proud of myself I was here. Maybe just to say
I was here
Is enough.
Maybe the reason why I numb myself to love is because I never experienced deep authentic love.
Existence seems so bland without passion, love, despair, that fight to keep going just to spite oneself.
I don't want to prove anything to anyone. To the society. You should know by now that disabled people are human beings . I just want to buy my own house and adopt dachshunds and go for Long walks in the forest by the Ocean and smoke weed and drink wine and read poetry while I watch the sunset. I want to never be afraid that I will end up in a facility or neglected in a hospital again. I want that part of my life to be banished from my future. The universe and all the secrets of the law of attraction and manifestation and visualization and desire remains elusive, giving and taking away. I've been taught to be cautious. I've given away everything in the past to people who gave me crumbs in return. I don't trust the sweetest framework of a so-called Love story , although I do believe in loving myself I draw to myself those who also respect and honor my story. I'm just rambling. I should be asleep because I have to wake up early tomorrow to go to Craig hospital and have my diaphragm pacer examined. Afterwards to relieve the stress and overwhelm I know I'm going to feel crossing the threshold of a hospital, I think I might go back to the KA VA bar and drink some non-alcoholic concoctions to simply feel good and shake off the partial despair I feel towards the possibility that this diaphragm pacer malfunction might require surgery. It's out of my control.
Also it's been literally freezing every day here in Colorado, snowing a lot, and my body has been spasming more frequently. The cold seems never ending. So I'm just praying that somebody responds to the video I made about hiring a weekend caregiver because as it stands I just don't get the care I need along with the movement and ability to go outside etc. Shopping or being in warm environments other than my home on the weekend. It's really tough on my body when I don't get stretched and massaged buy my caregivers on a daily basis. There are options I remind myself. Good caregivers will come along. It will all be all right. And I'm so tired…
I will for real try to do a live stream of my trip to Craig tomorrow. I have to be there at 11 AM and I'll have to ask if they are OK with being recorded, they being my respiratory therapists. It would be a very educational video or lifestream so I hope I'm successful with it tomorrow. And if I go drink KAVA afterwards, and live stream that, that might be quite lovely.
Your sleepy,
e,
Comments
Jan-Niclas Hoffmeister
You’re so so pretty
