Linda gave me life: now we both just want to spend time living it.
Linda was using the ambi-bag in wee hours of the morn, to breathe for me, but I was still suffocating because my diaphragm wasn’t letting the air out correctly. She moved to massaging the diaphragm itself so I could both take in and let out a breath. I have only the vaguest memory: after a while of the chest hurting, and the throat burning, there is a feeling of fizz in the blood, bubbling super fast and the need for breathing, after being so desperate goes away.
I don’t know how long she was breathing for me, I was already on continuos oxygen for sleeping, but it wasn’t working and I remember thinking at some point, “If she calls 911 now, I’ll be on a tube the next time I wake up.” Then the blackness overwhelming me when she got the diaphragm to work. It is a bit scary as I don’t know if I am going to wake up ever again, and it is a bit of a surprise when I do.
“Hey, still here.” I think, and try to move my head, noticing that I’m still on full bore oxygen.
I had shut down on Sunday completely for two days, which is what it has been like for the last few weeks. The heat is making things hard. I was out of it, in bed, then finally able to get up, went through about 7 hours of almost unspeakable hell; when it takes two hours of concentration to take sips of water and a melted smoothie. Like a cheap car in the rain, some systems just didn’t want to go when I needed them the most, and when I went to go for a nap, I just….stalled. The breathing stopped, and stayed stopped for a long time.
For us, it is the long road with minimal hope. A lot of ‘If’s’, finding out that Linda came second for a top job was hard, and still struggling to just keep the lights on, not to mention now three years of patch and parts. There is a feeling that right around the corner, things will improve: I just have to try and get my body stable to hang in there. The list of professionals who say I ‘should be’ dead is long and no one saying ‘Hey, here’s why she’s alive.’ – which is treated like a crime in our budget cutting medical system.
Linda works hard, not just physically but emotionally. And I am thankful for each comment, effort, thought, deed and choice of caring she makes. After over a year of miscommunication and the hurts on both side, she is responding back in a way I can understand (at least most of the time). I’ve been trying for the last 6 months or more to be conscious and responsible for my actions, despite problems in understanding, reaction and hyper-emotion due to reasons I can’t talk about because VIHA would love to slap me in chemical restraint drugs.
Emotional liability, either due to a body/brain connection that is not known, or due to lack of oxygen and rerouting dead pathways. At the same time, for the same reasons, my dyslexia in reading is high, and dealing with hurts is hard because in my head and what I feel emotionally there is no space between the ‘then’ and the ‘now.’ And so when working out an issue, several emotional ‘hurts’ may be discussed, which is like having them all happen 20 minutes ago (it isn’t PTSD, I am not reliving it, it is sort of like a box sealed at the height of emotional pain, and even if that is resolved, talking about it opens the box, which is always at that strongest emotional point).
Vulnerable takes strength and is painful and difficult, while being hard and stony is easy. Closing yourself off is easy. The risk of staying vulnerable to hurt is high, but without being open to that hurt, there is no way to share, to bond, to achieve an ‘us.’
I hope that in the near future finances and the stress that causes can be lifted. Also, hoping the 10 days of heat and 14 predicted can be survived.
Recognizing the strong reactions and trying to take five or 10 minutes to just sit there, or listen to some music, or watch something that literally changes my mood, viewpoint, and mindset is what I can and will continue to attempt. The realization that I have the strong emotions of a child does not absolve me, but informs me to try harder. But it sure is draining.
Linda has been listening to “I won’t give up” (on us):
While, when trying to work out the ‘Grrr’, mine is ‘What the Hell’
Linda: “So, how many images do you think they have stolen from you?”
Beth: “Honestly, probably a few.” (the problem of importing original art from Japan and using it is that then it becomes a ‘rip fest’ – and the cost and hours of Linda and I photographing the art can be eliminated by a right click and save – After supporting many of the more obscure circles in Japan, though it is much harder now, I hope others do as well).
3 hours ago