Tattoo #9
Yesterday I got my ninth and most ambitious tattoo. It’s the most ambitious because unlike the other eight, I cannot really hide it. The others are on my arms and legs, two on my torso, all easily hidden by clothes. This new one, this one I cannot easily hide. It’s on the top of my right hand, a big red poppy.
I got it for a few reasons, I’ve definitely wanted it for awhile. The main idea being, I really like opiates, I used to like them far too much. I completely understand why people pick them up and never put them down. In many ways they’re beautiful, they help you feel absolutely fucking perfect no matter how astonishingly bad reality gets. I don’t care what anybody says, sometimes you need that feeling of safety, that peace. When the entire world goes dark, a little light helps. Back when I was really sick and really terrified, really alone, when everything I ever feared happened all at once, opiates were like a nice warm blanket, a kiss from Sara, a hug from God. I don’t at all regret or apologize for taking that comfort. Try living that nightmare and tell me I did the wrong thing. However, after some time, you have to stop hiding and face the darkness. Eventually, that thing that is so beautiful will hurt you.
This tattoo, a tattoo I cannot easily hide, is beautiful, but after not too long it definitely hurt me.
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Inspiring?
A reader recently wrote…
“I wonder sometimes how you feel about being an inspiration. Because you are, as many have noted (including myself).”
I’ve actually been thinking about this and wanting to write about it for awhile. I understand that people think my life is admirable and that I’m brave, but I feel oddly about it. I mean, if my life and the way I write about it helps people, I’m glad, but I’m not trying to be inspirational. I look at myself and I see a list of flaws a mile long. As I think about it, the idea that I inspire people, I’m trying to figure out why it bothers me. I guess there are a few reasons. I feel like people admire me for things that I’m not. People tell me that they love my “positive attitude,” like I’m some sort of motivational speaker, but honestly, I’m naturally melancholy. I’m a little dark, sometimes I’m a lot dark. Sometimes I feel like Aimee Mann is absolutely fucking right about everything. Sometimes I feel like she’s writing about me.
but you sit there in the darkness,
and you make plans but they’re hopeless
So here I’m sitting in my car at the same old stop light
I keep waiting for a change but I don’t know what
So red turns into green turning into yellow
But I’m just frozen here on the same old spot
And all I have to do is to press the pedal
But I’m notPeople are tricky you can’t afford to show
Anything risky anything they don’t know
The moment you try – well kiss it goodbye
I have felt just like that so many times. Wait. Before we go any further, I have to say right now, the core of my melancholy isn’t solely from my disability, I definitely don’t want people thinking that, that answer is way too easy. I’m not that archetype. My disability causes obstacles, definitely, but my frustrations are more born from difficulties that I have getting around things that are in my way. I don’t lie around wishing that I could walk, it’s more that I just want the workarounds to be easier. My family’s just as fucked up as anybody’s, but for as long as I can remember, being disabled has been a non-issue. I was never told that I’m “special,” nor was I raised with the idea that being disabled means that I’m expressly limited or broken. I wasn’t raised with the saccharin-sweet idea that I can do “anything,” but I was also never told that couldn’t do things. My disability just has certain facts. I can’t walk, or drive a car, or play football, but so? There are a million other things to do. I grew up with the idea that I can always try just about anything, though I probably have to do it differently. So, if I am melancholy, unsure of myself, it’s more because of general anxiety than me being disabled. So, I hope we have that straight.
At any rate, I’m definitely not one with an eternally sunny attitude. I’d feel better if I didn’t get complimented for it. I am drawn to dark music and fiction for a reason, and that reason sure as shit isn’t because I’m constantly chipper.
I’m not perfectly brave either, but I feel like people think that I am. I’m nervous and uneasy as often as anybody. I’m scared every time I cough a lot. I’m scared before every trache change. I’m scared because so many of my thoughts go unsaid. افضل موقع مراهنات عربي I’m scared of dying. I’m scared there’s a Hell and I might go there. Sometimes I’m scared to leave the house, or even sleep. I don’t feel particularly heroic. العاب بلاك جاك I was so freaked out after seeing The Diving Bell and the Butterfly that I drank a bunch of brandy and passed out. That definitely wasn’t the brave thing to do. مراهنات كرة القدم اليوم
Now, here’s the tricky part. I’m melancholy, prone to reverie, doubtful, fearful, yet I’m also endlessly hopeful that as bad as anything is or feels, there’s a chance it will get better. I’ve experienced some spectacular things, so I totally know that life can be amazing. Good experiences are like heroin. I’ll endure a million bad experiences just for the chance to have things that I know are incredible. Something inherent in me keeps me chasing that fix. No matter how down I feel sometimes, I can’t quit. I’ve hit bottom so many times in the last two years, but whenever I hit that dark place, something about me lights up and I go again. Maybe I’m just an addict to anything that gives pleasure. I don’t entirely know. I just know that if I want to see Europe, or wake up next to Sara every morning, yeah, deep down, I’m willing to die for the chance. One can just as easily die living a life they don’t want.
If I come off as inspirational, that’s fine, but it’s also not intentional. I just want what I want. I’m flawed, I break, I adapt and I keep going. That is how I want people to see me.
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Can you say, God Complex?
So, Friday I went to the hospital at 6 AM for a trache change. I have to get a fresh one every 6-8 weeks. I absolutely hate this process, any procedure involving my airway makes me nervous. Every time I get this done, something goes a little wrong, or more than a little wrong, so I decided to write a detailed set of instructions, kind of a “Michael Manual.” I put 10 copies of the following into 10 red folders…
Hi there,
So, you’ll be be part of a team taking care of me today. I would definitely hate to die, it would ruin my day. I don’t speak, but I’m quite smart and I understand everything but math. I’m totally bad at math. Please talk to me and ask me questions directly.
My underlying Medical Condition:
Spinal Muscular Atrophy.
I’m allergic to:
Phenergan.
I’m currently taking:
Xopenex (1.25 ml, twice a day).
Cipro (twice a day).
Latex Allergy:
No.
IV placement:
I have veins in my hands and arms, but I’m a very difficult stick. I usually just get an EJ.
Communication without my computer:
For quick communication I use the following facial gestures (ask me to show you each gesture):
Eye brows up: Yes.
Eyes closed: No.
Crazy blinking: Help, something’s really wrong, I probably can’t breathe.
Fish face: I need a suction.
Left eye closed: I want to use the alphabet.
Use the facial gestures for quick communication, however, if I want to say something specific or if you have a specific question, we will use the alphabet.
Using the Alphabet:
Say each letter one at a time, A to Z. When you reach the letter I want, I will raise my eyebrows. In this way, we’ll spell words. It helps to write down each letter.
My BiPap and Battery:
My BiPap connects to a battery with two clips like jumper-cables. Red connects to red and black to black. Black must always connect first and disconnect last, or a fuse will blow. In the OR and in recovery, connect the BiPap to a wall-outlet and disconnect the clips. If the clips aren’t disconnected, the battery continues to drain.
My piercings:
My eyebrow piercings do not come out, just cover them with tape.
In the Recovery Room:
When I wake up, I will definitely need suctioned, both my trache and mouth. I might also need air in my trache cuff. Please talk to me and make sure I’m okay. When taking my blood-pressure, use a pediatric cuff on my leg. I also get a dose of pain medicine, either Demerol or Morphine. I take the small allotted dose ordered by a doctor. My mom and Celeste Nelson are out in the waiting-room, please send for one of them as soon as possible.
They were neatly organized red folders and the plan was to give one to anyone caring for me. It’s the most prepared I’d ever been for the hospital. I covered just about everything, right? I had a solid plan, right? Apparently not. Apparently nobody really wants to read a little manual.
Things go bad in pre-op. The anesthesiologist, a Ralph Robertson, says to my mom and Celeste, but not to me, never to me, that he’ll be putting me under with gas. My mom explains that I don’t want gas, that I always get an EJ (IV in my neck). I spell out that I use Propofol, an IV anesthesia. My mom calmly explains that I’m not comfortable using a different anesthesia without at least researching it first. At which point Captain Knock-Out launches into, “Oh, I’ve just had 25 years of experience caring for patients, I’ve worked with little 9 gram babies, but I guess you know better.” I think, “Oh, God.” My mom says that she doesn’t doubt his experience and ability to care for patients, but that I still don’t feel comfortable using a gas, especially since I hadn’t been informed about it until 3 minutes before the procedure. He says condescendingly, “Oh, so he’s more comfortable with a needle in his neck than going to sleep with a nice gas? That is your idea of better care?” We all emphatically say yes. This continues until after a bit, he seemingly relents. I know he’s not sincere, but we’re on our way to the OR.
That walk from pre-op to the OR is always exceedingly long and astonishingly short at the same time. I’m always afraid, afraid I’ll go to sleep and not wake up, afraid I’ll never see Sara again. I always tell God I’m really not ready, that I have more to do. I always make myself promises, things I’ll do differently if I end up okay. I never keep all of them, but I make them just the same.
We get to the OR, the light is bright as day. Mr. Anesthesia whispers something to a nurse and I think to myself, “Oh man, he’s going to start some shit.” He tells me he’s just going to give me some oxygen and get my IV ready. This seems reasonable, until he disconnects me from my BiPap and connects me to a vent. A vent that isn’t set right at all. My breathing is very shallow and difficult. I frantically blink and try to signal to somebody, but nobody notices. Then I get very sleepy, I get that warm feeling in my face that I usually love so much. I’m being drugged, but not with an IV. There’s no needle in my neck. I think, “that fucker did it anyway.” I fall asleep frightened, not enjoying my drugs at all, not knowing if I’ll wake again.
I do wake up in recovery, but I can’t breathe. My eyes aren’t quite open, but I hear a fellow say, “no, I think you just turn it on.” They’re talking about my BiPap, apparently they have no idea how it works. Once they get that settled and I’m breathing properly, I get my shot of Morphine for pain. Usually, Morphine feels like Christmas, like the entire world is absolutely perfect. Morphine is like kissing Sara. Yet, that day in recovery, absolutely nothing is perfect. I can’t relax. I want to see someone familiar, my mom, Celeste, somebody. Nobody is called. I develop an irrational fear that my battery will go dead and nobody will notice. My thoughts race. Have the clips been on the entire time? How long have I been using the battery? What if this battery is the battery that died an hour early on the plane to Boston? Is my battery beeping? God, I wish mom and Celeste were here. Please let me go home. Please let me see Sara again.
When I finally get back to my mom and Celeste I tell them about the vent and the gas. We demand to speak to a supervisor and the anesthesiologist. Ralph tap dances and won’t give any straight answers. He won’t even look at me, let alone talk to me directly. He actually claims that he didn’t realize that we agreed on absolutely no gas and that he still gave me the IV first, I just didn’t notice. That’s right, he still put a needle in my neck. I immediately think of From Dusk Till’ Dawn when Pete shouts at Richie, “you fuckin’ liar!” He hooked me to that vent and I went down like a Times Square hooker. You don’t miss getting a fucking needle in the fucking neck. I’ve had it done several times and remember each time vividly.
That is my problem, I remember everything too vividly. I feel things too much. It’s why I can’t relax, can’t sleep.
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Not for Michaels
Whenever Sara’s cat gets into something he shouldn’t she says, “no, not for kitties.” So, whenever I see a movie, particularly horror, that I know she wouldn’t like, I say, “no, that’s definitely not for Saras.” Normally, that phrase isn’t necessary for me. Movies and books don’t scare me, they don’t bother me at all. However, I wish to God somebody had said that to me before I watched The Diving Bell and the Butterfly. At this point, anyone who hasn’t seen the movie and doesn’t want to know the ending should stop reading right now.
To put it bluntly, The Diving Bell and the Butterfly fucked me up like nobody’s business. Diving Bell is the true story of Elle editor Jean-Dominique Bauby, a man entirely paralyzed save for his left eye after a stroke. Much of the film is shot in the first-person, looking at the world through his eyes. Waking up in the hospital, the initial sense of confusion and utter disconnect, the realization that he can’t speak, the frustration of not being able to communicate, the loneliness and isolation, it’s all there and it’s captured perfectly. Too Goddamn fucking perfectly. It was like watching a gag-reel of the spectacularly worst moments of my entire life. It’s amazing how I’ve thought the exact same things as him in certain situations. I’m better off than him in that I can use a computer and when I woke up two Januarys ago, I definitely wasn’t surprised I couldn’t walk. Still, we share so many other experiences. Of course, there’s one experience we haven’t yet shared, he’s dead and I’m not. Right when he starts to get a little bit comfortable, right when he’s perfected the use of eye movements and the alphabet to communicate, he’s hit with pneumonia and dies. One evening he wakes up coughing, mucus pouring from his trach site. It’s such a disturbing image and I can’t seem to shake it. I actually started coughing while writing this, needed a suction really badly and immediately saw that image. It was like watching how I’m almost certainly going to die. I’m going to have some kind of acute respiratory failure and no vent or medicine will be able to help me. I’ll drown, I’ll suffocate, I’ll die. That movie gave me a bunch of images to go along with things I already worry over.
Obviously, I’ll get over it, Diving Bell will fade some, but not yet. I wanted to drown it out with brandy, but I know that is the worst possible thing to do. I’m better off writing and getting things done. That is exactly what what I’m doing.
