Every few minutes I notice — and I know it happens more than I notice — that I’m not breathing. Sometimes I don’t notice until the impulse kicks back in and my body takes a big automatic gasp of air, and sometimes there is no impulse… what an odd feeling it is not needing to breathe. I mean, you know that you have to breathe intellectually, but when the biological imperative is gone, when you no unstoppable needful lust for more air, it’s a very strange thing. You really feel removed from who you are physically, like a ghost — if it wasn’t for the constant pain trapping me in my body I’d almost believe I already was dead when this happens. It’s even stranger when my heart stops as well, which the sensors claim happens briefly about once an hour, but I only notice it every day or two. But with no heartbeat and no breath, I really feel like nothing, like I don’t exist, I could almost pull away from all of it.
But it scares me too because even thought it doesn’t hurt, I know it’s damaging me, especially while I sleep. I can see myself making more mistakes when I write, having more trouble composing my words, making sense. I don’t have any fear of death — I’m completely at terms with that at this point and while I wish I could live longer because there is so much more I would like to do and see, I can’t really complain about the life I’ve had. But what I do have a lot of fear of is having to live some terrible half death because of constantly starving my brain of oxygen. I’m waking up every day now with a terrible headache that sometimes lasts the entire day, constant ringing in my ears and a sort of seeing and thinking stars that’s spread all about my mind. I know that just by worrying about it I’m going to imagine it, so maybe I shouldn’t even think about it, but I’m convinced that I’m losing mental capacity… But when you lose bits of your mind it’s not like losing a finger — you don’t even know what you lost because it changes the nature of your being, and you just have this vague sense of dread that something has gotten worse but you can’t be sure you’re just being paranoid.
I watched a documentary about Edith Piaf while writing this. I hadn’t realized that she was a cutter. I suppose it’s not surprising given the troubled passion captured in her music that it would leak out in other ways as well. The footage of her performing with Theo Sarapo near the end of her life is quite wonderfully joyeux though. Him only 27 at the her end at 47, but unavoidably, every damn fool thing you do in this life, you pay for.
I didn’t do much today except lie in a dark room because I couldn’t think straight from the pain, but while I was up and about I also amused myself today by writing an entry on ModBlog about how resurrection suspensions look like alien abductions (you can click the picture for the entry but it doesn’t add much to what I’m saying here)… But that got me reminding myself of the wonderful mythology of “Project SERPO“, the story of an exchange program that took place between Earth and Zeta Reticuli for 13 years starting in the mid 1960s. I’ve read a fun graphic novel adaptation of it, which is actually how I was first introduced to it, but it wasn’t until I started reading more about it that I realized how seriously some people in the UFO scene took it. I really wish it was real, but I’m afraid I can’t bring myself to believe it. Nonetheless, I enjoy the myth a great deal. I’m about half-way through listening to a Coast to Coast show about it that was aired not long into when the “leak” began. If you’re curious and have some time to kill, you can listen to it here.
If I had more time on my hands, I have to admit that it would be terrific fun to create UFO hoaxes. It’s a wonderful medium that combines performance art, media criticism, and story telling. I suppose things like the John Titor time traveler hoax is another good example of this type of art.
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Ask your Dr. if sleeping with an oxygen tube is advisable, my reasoning is that it will increase your blood oxygen level when you do breathe, which should give you a longer grace period when you don’t.
Have your doctors ever talked to you about a pacemaker? My father had a heart attack about 10 years ago which damaged the nerves in the heart. While the muscles were relatively undamaged, like you, his hear would periodically stop for up to a minute at a time.
They installed some sort of passive pacemaker that only activates when it senses something unusual, like a long pause. Unlike older pacemaker users, my father can easily go to the gym for hours, and has no problem with natural variation in his heart rhythm.
Re: the breathing, another friend of mine has an extremely rare condition where the muscles in her stomach no longer contract automatically to digest food. After several years of being basically unable to eat, an experimental modified pacemaker was installed that constantly stimulates her stomach muscles, and has allowed her to return to a normal diet. Perhaps something similar could be done with your diaphragm? I have no idea if that’s possible, or what the side effects may be …
Of course, neither of these solution to the underlying issue, but they may mitigate long term brain damage and other issues.
I’d be happy to put you in contact with my father or my friend, if you like.
Best of luck.
keep writing
Shannon, since you have no Atmungsimpuls anyway, couldn’t you use a Sauerstoff-Hilfe at night? I mean, WHEN you berathe, the O2 intake is higher and this may help you. Or is it the other way around – with more O2, you’ll stop breathing even more?
i admire your strength and your passion for life.
since your heart stops, will a pacemaker be in the picture at some point?
I stop breathing a lot. Quite a few times a day. It happens more when I am tired or hungover, but it often happens just after lunch. It is worse when i am tired and trying to concentrate on something. The first thing that I notice is that my vision starts to go black and then I notice my heart rate is very slow and feint and I start breathing again. This has been happening for a couple of years now and in the last 6 months it has got progressively worse. I don’t believe that there is anything wrong with me as I am healthy otherwise, but your post here has sparked my interest. I will look into it more.
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