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Good times, bad times.

Which, referring to the subject line here, incidentally, is the name of the Led Zeppelin song that I played about a year after I started on electric guitar, well, "played", I managed to squeeze out most of the notes, even the solo, although Iris would never actually call it "playing", it felt great, and after that I felt like I didn't need to play the guitar no more, since, hey, if you do a few Led Zeppelin songs and there are still no hordes of scantily clad nubile young women throwing themselves at you, what's the use? I actually need to look up what "nubile" means – I've heard the term being used in this fashion but I have no idea if I'm referring to nude women, women from the far and away country Nubiles or the regular kind i'll twist your balls off if you mess with me women. Anyway.

 
Good times; 10 out of 10 points for the Dutch healthcare system.
I'd like to go kitesurfing. Like I've been doing for 10 years. But the grip in my right hand is getting weaker. I asked the revalidatiearts what we could or should do? She made an appointment with an ergotherapeut (yeah, google is your friend again today), who saw me this morning, who then proceeded to equip me, within one hour and twelve minutes, with a custom-made kitebar-gripping cyborg device. Custom made. Within one hour. Picture below. Holy crap. I'm impressed. And crying again like a baby. Does this ever stop? Thank you, E. from H., for doing what you think is your job, which is doing more for 'quality of life' than any overpaid marketing strategist ever did.
2013-08-20 18.07.33
 
Bad times.
I have one friend, I mean I have a lot of friends, but this one friend whose brain is so huge it's almost bigger than his heart, he knows me, he knows I eat Omega-3 fish oil diligently since 7 years, he's got the same gut feeling that I do: does this have any effect on the disease? So without me even having brought it up, he points me to this article, that says: ALS mice that get fed omega 3 die earlier. So this one is good news and bad news. I have a telepathic friend who looks out for me on the medical field. And the stuff I took to keep me from getting depressed just maybe, may have been helping the disease progress faster. Let's see what the doctor says about this one. *UPDATE 8/30 – after discussion with the doctor, I learned that the mice basically OD'ed on the EPA-oil. So no hard feelings to the doctor here!! In the tests they gave mice the equivalent of 90 fish-oil pills per day. And in combination with DHA it's a different story also. I'm still not taking them though.*
 
Things about ALS that make me cry in a good way:
  • The sight of my colleagues diving into the Amsterdam water to practice for the City Swim.
  • Iris diving into the Amsterdam canal (OK, I can't resist asking: please sponsor her! LINK – her name isn't up there yet but she will be. And sorry for asking on her behalf.)
  • Random acts of kindness, Claartje's CD, the sight of my 4-year old neighbor kid opening the door without underwear. I wasn't crying because his penis is bigger than mine, if you're wondering.
  • Nick Cave. Live at Lowlands. Beautiful sad reality. That man is a master. Pictures of him and NIN at the end of this post.
  • Realising after our first huge fight that the idea I had about marriage (that somehow it would be difficult) is completely false. In terms of cost-benefit analysis of a relationship, at least on my end of the bargain, man, you hear people say that they feel lucky? They aren't married to Iris or they would know what REAL luck is. I gotta stop emailing and spend time with her. I hear you screaming already; yes, I will.
 
Things about ALS that make me cry in a bad way:
  • One of my colleagues swimming the practice run so fast he is back and forth before I'm even back. OK, this one is a joke.
  • Hurting other people because I feel so boxed up, so pushed, so fucked up. It's starting to creep out, to seep through, fuck it.
  • Feeling hurt by people meaning well but who mis-listen. It's not that difficult – just listen to what I have to say and stop pushing your own agenda.
  • Failing to get the time and space that I feel we need.
I'll be better once I have a grip on this, once I meditate enough to give this space. Until then… sorry for the negativity.
 
Things that make me feel good:
  • The fight is gearing up. I haven't decided yet if I am going to fight or not, if I am going to accept or push the limits, but like I said, let's try each other out, let's have a practice fight, you and me, and me is everything about me, so whoever I can tag along as well. Troops with a hunger for just a small fight are welcome to apply – and expect to get enlisted.
Cheers y'all, time to get back to work,
 
G (pictures of NiN, Nick Cave, an inside joke (R. and myself still believe there's a .000001% chance it's not ALS but Lupus, but Dr. House knows better) and a group picture of us at Lowlands)
 
2013-08-16 22.05.46 2013-08-18 22.06.25 2013-08-16 19.41.44 2013-08-16 18.50.49-2
4 replies
  1. Tjarda
    Tjarda says:

    Alle gevoelige reacties, tranen, boosheid, frustratie en tekens van liefde gewoon nog even niet hier ventilerend wil ik wel zeggen dat die haak vreselijk ‘bad ass’ is. Best stoer!

    Reply

Trackbacks & Pingbacks

  1. […] be unliveable without these things, and yet I know patients who needed but lacked them. I got a device to keep on kitesurfing, even. If you speak Dutch, check out this […]

  2. […] be unlivable without these things, and yet I know patients who needed but lacked them. I got a device to keep on kitesurfing, even. If you speak Dutch, check […]

  3. […] be unlivable without these things, and yet I know patients who needed but lacked them. I got a device to keep on kitesurfing, even. If you speak Dutch, check out this […]

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