Glenn Branca is Dead, but not in my heart

He was a crucial part of my growing up from obnoxious teenager to starry-eyed young adult. I had met a lot of musicians and actors but meeting him nearly made me faint. I Ardently loved him for what he did. I didn’t want to be a groupie, I wanted to sit at his feet and learn.

I don’t tell too many people this but when I did get to hang with him in person (I’d talked to him on the phone a few times before) (i’d also technically met him in person but at the time all I could get out of my mouth was “that was a great show” while staring) we talked about a lot of things and he told me he was managing a new band in New York. HE ASKED ME IF I WANTED TO MOVE TO NEW YORK TO BE IN THE BAND.

Sadly, at the time I had no desire nor means to move to New York, but I’ll never forget that My hero, Glenn Branca offered me a chance to be his protege. But I was intimidated. Yes, Me. I was so terrified by the notion of failing in his eyes that I said “oh wow, no, not right now… maybe in a year?” I said no because I wasn’t ready for that much change.

The band was named Rat At Rat R and I have two albums by them. I liked them but they never really took off. It doesn’t matter; Glenn Branca did a lot of work and I could have POSSIBLY worked with him. I could have massively changed my life by moving to NYC and joining some band he produced. But it just didn’t seem like a rational thing to do. and I was absolutely petrified at the notion of doing something with that much expectation. I was 17. I was just happy to be considered his “biggest fan…. possibly my only fan haha”

I’d written to him a few times after that and always received cordial replies. I wish I hadn’t gotten rid of the email I was using last time I emailed him.

But it doesn’t matter that much…. I let him know how important he was to me and that’s ALL that ever mattered to me when I met my heroes. Just to give them the validation and appreciation they had earned.

Oh Glenn… I hadn’t talked to you or even checked out your new work in a while but I will always love you. With all of my starry-eyed, hungry, girlish heart.


Lost Brain Cycles

Scalzi tweeted back at someone for criticizing him. He’d complained before about how writing during trying times sucked and someone essentially told him to get his act together and quit whining or whatever. Scalzi basically outlined how creating under bad circumstances robs an artist of their productivity and all creators regret having “lost brain cycles”

Damn that wonderful man. That’s exactly how I feel about it too.

I’ve got to study. I’ve got to occasionally do work. I’ve got to pay bills, go shopping, make food, clean up, do laundry, spend time fixing the kids’ problems and occasionally fix a problem or two of my own. All of that is time I could use to create. to write.

Obviously there’s times one must work and times one must play and sometimes there’s time to create- it’s not all about just creating. But when times are hard, it’s not just about time on your watch, it’s about energy, creative juices, inspiration and feeling well enough to even try. Because (and this becomes more true as you get older) you absolutely must give your body and brain down time. Even if all I did during the day was fret over bills, that was still stressful and upsetting and now I need “off time” – except now I’ve got to go to the grocery store and get food. Which is more stress; figuring out what I can afford and what is appropriate and what will stretch my dollar etc

After a few days of this kind of thing, there’s not much left in me for creating.

People say “just sit down and do it!” and I wish it were that simple. The last time I sat down with every intention of working on my writing, I got maybe a paragraph done before I realized I was falling asleep. The time before that I sat for 40 minutes and wrote perhaps one sentence, because my mind kept wandering away. Another time I re-read the same two sentences twenty times before I gave up being able to even understand what I’d previously wrote.

Duress is normal, sure. Creators can create under duress, sure. But we need basic survival things out of the way in order for creativity to continue. (This is why Patreon exists)

I wish I could create a fund for myself that made it so I didn’t have to fret over money, not clean houses and maybe even hire someone to do some of my basic errands once in a while. Or maybe just rent a cabin for a week. So I could focus on nothing but writing for a whole week. I wonder how much I could get done? I wouldn’t even have to worry about what time I slept or woke up. I’d get up when *I* felt rested and then after a few cups of coffee and sitting on the porch swing looking at trees, I’d get up and start writing. And knowing me, I’d write all day without even realizing what time it was. And I’d start yawning and find out I’d written into the night, I’d made quick food for myself and eaten while still writing. I’d fall asleep on the couch while thinking of my next chapter. I’d not want to stop until I felt finished.

It would be glorious.

But that’s not the kind of thing you can do when you’re still worried about how you’re going to keep the electricity from being shut off or whether you’re going to pass that next exam. In fact you’re probably going to fail in school which means you’ll never get a decent career which means you’ll never have enough money to even think about escaping this cycle of poverty; you’ll always and forever be fretting about bills, time and energy until you DIE and those wonderful stories trapped inside will never be shared.

JK Rowling, you say? May I remind you that she went through everything I’m talking about in the seven years it took her to write the very first Harry Potter book. Think about how much she could have gotten done without all that? Once she was on a decent track to financial non-duress, she didn’t have to take seven years to write the next book.

That’s what I’m talking about.

So support your favorite writer. Even if they aren’t writing anything right now.

The Horror of Beauty

I have had four children. I am also under five feet tall. I have an “orphan disease” called Jarcho-Levin AKA spondylocostal dysostosis. (I’ve written about that a couple of times) which means rather than having a long torso and short limbs like most “classic” dwarves, I have a short torso and long limbs. So you can imagine how confounding it was for my body to fit a baby in there.

Strangely enough, my first child was my largest and the only one I gave birth to naturally. The other three were in transverse presentation which just means they lay sideways inside me and refused to turn upside down like a good baby should. Babies can’t be birthed sideways. So I had three C-sections.

Now, imagine if you will, a torso about 7″ long being stretched out to accommodate a series of creatures from 21-23.5″ long. Yeah that doesn’t work so good. I was already pretty stretched out after my firstborn (9lbs and 24″) but with exercise, extended nursing and a healthy diet, my tummy receded. Mostly. I had the classic “pooch” with massive stretch marks. I didn’t care, of course, because I was so thrilled to have a baby. I was in my late 20s and assumed I’d “snap back” at some point.
Well five years and two more babies I sure as hell didn’t “snap back” at all. I got worse, of course.

Mostly I didn’t mind. It was annoying to have a flap of flesh hanging down but I kept believing it would shrink back… after all, the doctor said my hips would shrink back, right?

My hips did shrink back. My tummy skin did not. The hip shrinkage made the tummy non-shrinkage look worse, in fact. Chee thanks, nature.

By the time I had my fourth and final child, at age 41, it was pretty damned obvious that my tummy pooch was not ever going to shrink or otherwise stop annoying me. By the time I recuperated from the last C-sec my tummy pooch was a hideous foul thing. It hung a full FIVE inches below my pelvis. It obscured my precious parts from sight. It was bulgey and ugly and so deeply wrinkled that my navel appeared to be a cavern and I worried ridiculously about hygiene, afraid one day I’d be navel-cleaning and discover a nest of small mammals residing in it.

The worst part though, was the “flap”
I’m not talking about the piece of flesh itself, I’m talking about the SOUND it made when I moved. It made a very audible noise when I moved if I did not clothe myself carefully.
When I say “clothe myself carefully” I am being coy. Clothing myself with the pooch in mind was a process in and of itself. There needed to be cloth underneath the fold to muffle the sound it made and absorb sweat plus there needed to be cloth on top of it to help buffer the movement AND there needed to be tight cloth over the whole thing to try to tamp it down and smooth the surface appearance. After all that, I usually needed a nice loose layer to go over everything. Buying clothes was a depressing event because this flap basically added about three inches to my tummy area. If I bought high-rise pants to go over the whole thing I had to get a size 14 (42″) but if I got low-rise pants to go under the flap, my butt would sag like a gangsta wanna-be. And I don’t have a lot of butt to begin with. Short shirts were out of the question. Forget something like a halter top or bikini. HAHAHA. I wore man’s size large shirts which went to my knees and just left it like that. I looked like I was wearing my night clothes every time I went anywhere. Lets not even get into wearing a dress. I could sort of get it all under control by wearing underwear and super-tight pantyhose or tights. But dresses aren’t made to fit me anyway so to find one that was nice looking but didn’t accentuate the weird bulgey thing in my midsection was just an exercise in futility. So slovenly was my usual couture. I preferred to wear elastic band skirts with tights under and a long shirt on top. Even so, it was a production just to choose my clothes every day. Heaven forfend I went anywhere that required excessive walking. And by “excessive” I mean more than the steps it takes to get from the car to the nearest doorway. When confronted with stairs in public I nearly cried. If I was dealing with a baby and thus without any attendant hands to hold over my gut, the “flap” was thunderous to me and I often toyed with the idea of hurling myself over the stairwell just so I could break my ankle and have an excuse to NOT climb any stairs for a while. This was not a happy time for me. Moving about outside of my own house was a prospect that gave me pause more than once. Vanity? Don’t talk to me about vanity! I could have been walking around with legs like redwoods and a face only a monkey could love, and I would have been less self-conscious than having to hear that GDmnd “flap” sound every time I took a step. Oy and Vey. There were times when I chose to sit immobile just to avoid hearing it one more moment. And everyone who knows me IRL knows I hate to sit down (I’m too short, can’t see anyone, I prefer to stand) I sometimes wondered if I could get away with just using a kitchen knife and then rushing to the ER where they’d be forced to finish the job for me? Of course not, but damned if I didn’t think about it at least glibly. I wasn’t sure the requisite psychiatric brouhaha that would ensue would be worth it.

Still, it was an ever-present part of my life, this pooch. The size of it, the look of it and the sound of it were inescapable. Reminders that my body was used up, broken and worthless as an object of admiration forevermore. Which was a crying shame because at this time of my life, I was oddly more conscious of the fact that the REST of me was pretty damned awesome. It was just this horrid horrid fleshy bit that wouldn’t stop haunting me.

So, to sum it all up: the pooch had to go.

Let’s jump ahead through various and painful, related but ultimately inconsequential anecdotes about finances and just say, I got the money. Six Thousand dollars. Maybe not a princely sum to many people but it might as well have been six million for all the money I had. But fear not, I found a way to get the money. Namely, my (ex)husband got a medical loan. i would have signed away the next five years of my life to get rid of the pooch by then. Despite still having student loans and a barely treading water income, we took on a loan to pay for it. It was that important to me.

I did research and found a very highly regarded doctor who had all the certifications and stamps of approval and high reviews etc etc. He actually charged a fair price – some were jacking it to $8-10K. And I liked him too. Which is always a good thing.

So I had the surgery. Yeah of course I was scared. Surgery is scary stuff. You get put under. Someone is cutting you open. It’s a scary thought. The surgeon told me it would take anywhere from 4-8 hours. Dear gawd.

I woke up and… I really don’t remember. At all. I’m sure I was wheeled out at some point and taken home. I think I was allowed to stay at the recovery place for a day? I don’t remember. I really really don’t.
I was completely doped out of my mind. Thank goodness.
About two days later (?) I remember waking up for the gazillionth time in horrible pain. It was the day I was supposed to stop lying in bed and start moving around. I knew how important that was because I’ve had three c-secs. You need to move around as soon as possible so your blood doesn’t pool up, start forming clots, traveling to your lungs and/or heart and kill you. oR worse, clog your brain and make you a cretin for life. Yeah, so I got up.

Let me tell you… when they say abdominal lacerations are the most painful thing going, they are not kidding around.

Let me detail some things for you first.

A tummy tuck generally requires two main incisions: one straight down the middle and one horizontal, curved to your pelvis. The perpendicular incision usually goes around your navel which is removed for repositioning. The cuts do NOT go through your muscles but your muscles are rearranged to go back to your midsection (where they were before you got pregnant and had an alien try to split you in two) The abdominal muscles are then stitched together tightly in order to stay in place while you heal. The flesh is cut according to the pre-op drawing they do on your belly (yes they actually draw it on you first. With a sharpie), the navel is then fit back into the new cuts. Liposuction is applied in certain areas to flatten it smooth and the fascia is rigged into place (might be sewn, might just be pushed and held in place by overskin) then the skin is sewn back together. In layers. The inside is sewn with individual sutures and the outside is stapled. Then more liposuction to finish the ‘sculpting” and they start covering everything up with massive amounts of bandages and tape.
Unfortunately the curved pelvis cut is right on top of your pelvic bone so the tape is afixed on top of the pubic hair that is right at the top. Myep. WOW does that hurt.
Anyway, while they are sewing your midsection, you may (I opted for it and paid extra) get a lidocaine drip inside. And by “inside” I mean a loooooooooong tube about the size of an old fashioned stereo speaker wire is left inside you alongside the midsection cut. There is a tube on each side of the cut. There are holes all along the tube. The tubes are connected to a lidocaine drip “machine”. I say that in quotes because when we examined it, it turned out to work solely on the principle of vacuum. The tubes are connected to a large hospital-grade plastic bulb of lidocaine housed in a small box. The ‘caine hangs around your neck and using vacuum pressure it leaks slowly out. There’s nothing mechanical about it but it’s kind of nifty. It ekes ‘caine inside you right next to your incision.
Because incision pain is no freakin joke, yo. How do I know this? Because despite having this wondrous “machine”, I still was in horrible horrendous pain. I could still feel the incision, just in a muted kind of way. But trust me, its bad enough there’s probably not enough painkiller in the world that would make that go away without death. It actually felt like someone was still slicing me open down the middle, just in a slightly softened, muted kind of way.

So I woke up with my entire midsection bandaged heavily and tape tugging on my pubic hair and a weird thingie hanging off my neck and a catheter in my urethra and two tubes attached to bulbs one on each side of me to catch internal fluids. But I was supposed to “move around”


So. My life became a dull hazy repetition of movement and pain. I was lying in an armchair (you can’t lie down flat because getting up and laying down requires bending at the waist, which you can’t do because of all the bandaging. and it hurts like hell. Like pass-out kind of hurt) with my feet up in compression stockings wearing the skankiest, most People-of-Wal-mart kind of dressing “gown” with a box of ‘caine hanging off my neck and two plastic bulbs of bloody fluid pinned to each side of my gown. I am a classy kinda gal you betcha.
The catheter, luckily, was taken out on the second? third? day. taking it out kind of hurts but hell you time those pain meds right and who cares, amirite? I would get up whenever I was cognizant enough to remember it and start shuffling around. I’d usually shuffle to the bathroom whereupon I would start the procedure to sit on the toilet.

Unsnap gown. Unpin bulbs of bloody fluid. Put each bulb in a pocket. Pull spanx down (you have to wear spanx to help compress against the massive inflammation. more on that in a minute) partway. Take each BoBF and gently, carefully, duck it under the spanx to get the tube free and put it back in the pocket. Finish pulling down spanx. Shift ‘caine box to the side so it doesn’t bang into the toilet during the next move. Brace one hand under, on the toilet seat and one hand against he wall (pain meds make you kind of unsteady). using all the strength in your arms, lower self as SLOWLY as possible with back as straight as possible, down to the toilet until backside makes contact. it helps to lean to the side. Do business while trying not to cry out in agony. Rest a second or two. Do the wiping. Brace arms again for rising up. ONce upright, pull spanx partly up. Duck BoBF back under spanx so tubes are coming out from bottom of underwear. Pin each BoBF to the gown again. Snap gown. Swing ‘caine box back around to front (this is important step to remember otherwise the box is likely to swing unexpectedly and either clock you in the chest or catch on something like a doorknob while exiting the bathroom)Exit bathroom. Check BoBF to see if they need emptying. They always do. Follow procedure to empty BoBF. Try not to gag on the smell of bloody fluid. Put bulbs back on tubes with severe suction such that you can feel it pulling the fluids out of you. Shuffle back to the chair of doom. Repeat variation of toilet maneuver in order to rest in armchair. yay. I moved around.

So there’s these bulbs of bloody fluid. They are the drains coming out of your incision. They allow the body to release inflammation liquid without making your sutures pop from the pressure. It’s T-cell white cell interferon I don’t fucking know what the hell it is: its bloody, it smells gag-alicious and you have to not just empty it periodically, you have to measure the fluid, sanitize it all down with rubbing alcohol and write down the fluid volume on a chart. yeah. Fun times, my friends.

Let us not forget: you also have to get a shot of blood thinner in your thigh every day. Since this is an intra-muscular shot, the needle is pretty effing big. Like “don’t look at it” kinda big. The shot itself is pretty big too. I know because I had to get that shot for ten days in a row and the shots came in a box which was about 6″ tall. So it wasn’t like a little prick, it actually took a couple of seconds to push it in. You may not think a couple of seconds is much but when someone is forcing burning liquid into your thigh muscle slowly, you perception of time changes. Hurt like a mofo to get it every damned day. We wouldn’t let Lil Miss into the room because I didn’t want her traumatized by seeing me get that shot. I know my husband was not exactly loving having to give it to me when I’d cry out during the giving. Who likes hurting someone who’s already suffering? Nobody human.

So that was my basic daily routine for ten days. I shuffled and drained and toileted and sat and popped pain meds and shuffled and slept and hurt and hurt and hurt.
Somewhere around the fifth, sixth? Day I began to actually feel some differentiation in my hurt. I will share them all with you!

Of course the incision hurts. Its the first thing to hurt and the pain of it is bright, sharp and slicing. Imagine a paper cut across your midsection and pelvis. Now spray some of that green throat stuff on it. That’s what it felt like. It pretty much drowned out the pain of everything else. But somewhere before the first week was up, the pain of that receded just the tiniest bit and I noticed the myriad other pains.

Muscle pain. You think you know muscle pain? You work out or you sprained your ankle or you tore a ligament? Yeah, that’s pain. But you don’t KNOW pain until you’ve had abdominal surgery that causes the muscles to cramp up over and over which pulls against internal stitching at the same time.
I’ve been in labor and it hurts, I will not lie. This pain was verrrry similar but guess what? It was way worse.
Uterine contractions are cramps, yes. You can feel them when they happen. The uterus is large and cramping against a solid object inside of it so it’s essentially trying to squeeze the object out like closing a fist around a bar of half-used soap. But the muscle cramps of the tummy tuck are amazing breath-taking cramps that made me do nothing but sob. And that’s WITH high-dosage lortab. Those cramps were so hard (you could feel them, hell you could SEE them from the outside) that more than once I actually wondered if my body was going to tear something of its own accord. The cramps were so hard that it actually restricted my breathing. At one point I was sobbing and shuffling half-bent to the bathroom where I got a towel, put it under the hot tap until steam was rising from it and slapped it on my belly. My skin turned bright red and my husband said something about burning myself but I could not hear anything. Those cramps put childbirth to SHAME. The saddest part of it was that nobody, not the doctor, the nurse, the PA, the office girls, not even the literature had mentioned anything about muscle cramping. I had NO idea this was going to happen. I do believe the first time it happened I called the surgeon’s office terrified and of course they told me it was perfectly normal.
If I forget everything else about my tummy tuck, I’m sure the only way I could forget the abdominal muscle cramps is if I suffered brain damage.
And those cramps went on for longer than a week.

Believe it or not, the bandages and tape hurt. Some of it was because the tape went over my pubic hair as I mentioned, but some of it was actually because my skin was reacting to the tape or the glue in the tape. At some point I could not stand the feel of it in one little area – about 2×2″- and began to prise some of the tape off. I ended up cutting some of the bandaging away from that area. There was no stitching or incision in that area so I figured it was reasonably safe to do so. But the affected spot was seriously inflamed. Angry red and starting to weep. I smeared it with antibacterial ointment and tried to keep it untouched. Then there was the pubic hair tape. I ended up prising some of that loose as well. Because, as is typical, the top of my mons was shaved to facilitate the surgery and when the hair started growing back, it was underneath a ton of surgical tape. This is not a recipe for happiness. So I prised the edges of that off and retaped it with store-brand bandage tape in a looser way. Lil better. My hair follicles were not amused.

I could feel some pain around the incisions, as noted, but it was muted and weird. Partly because of the ‘caine drip but also because the surgery had cut many nerves which were now “dead”. So the incision area had a lot of numbness in it but there were plenty of nerves that had *not* been severed so there was also plenty of feeling. Combo: deadened-but-really-painful.

Because narcotic pain killers don’t confuse the brain enough, yanno?

But I have not said anything about pain killers here.
Yes, I had a nice big scrip for narcotic pain killers. I also had a prior scrip for lower-dosage pain killers from a previous condition.
The problem was that, as nice as lortab is (and it IS, I loves my lortab) it barely covered the pain I was feeling. At least for the first two weeks.
Part of the problem is dosage: generally everyone is allowed to have ONE pill every 6 hours. It doesn’t matter how big or small you are, how your body metabolizes food, how your body processes medicine, or how high your pain level is. You get one pill every six hours. So that is what we stuck to.
As many pain sufferers know, that *might* have worked for some people, but it didn’t work for me.
I’d get about 2-4 decent hours of pain killing with that dosage. In those 2-4 hours, I’d have about one hour of blissful COMPLETELY pain-free time which I would use to recline and sleep. The other 1-3 hours, I’d just feel slightly unhinged from mild pain. But it was enough panacea to keep me moving and do a little socializing with my family. The last 2 hours of every dose was hell. I’d feel every single incision, bruise, irritation and cramp in my entire surgical area. And there was nothing I could do about it. I couldn’t read, I couldn’t do the internet, I couldn’t do much of anything worth a damned in those 2 hours. Just sit dully waiting for my next dose and hope that maybe I could sleep the two hours away. I cried, I whimpered, I gulped a lot and I shuffled around trying to stay distracted. But those 2 hours… I hated my body and I hated the world.

So, to sum it up: the first ten days of recovery were Dante-style hell. I actually remember it in a sort of hazy blur of pain and bathroom trips swirling around that green chair I lived in.

Ten days out, I got my bandages removed completely. and the staples along my midsection were removed. My midsection incision was actually healing really nicely. It was weird as could be to see my navel as a puzzle piece fitted into my body but it was heartening to see my navel as an actual bellybutton instead of a miniature spelunker’s paradise. My pelvic incision was not looking so hot. Of course, this is where all the fluid collects (yay gravity) and where most of the bruising occurs as well. My incision was not healing uniformly either. But I knew that was “normal” from my last c-sec. I no longer needed the drains and so they were removed.

Let me tell you something: having someone pull long thin tubes out of your abdomen is a very weird experience.
I had no idea those tubes were so long. I’d guess about 2-3 feet. So now perhaps you can see that having someone pull them out of you is a bit on the surreal side of life.
How do they do it? By fooling you!
I was lying down on the exam table, they had just taken out my staple and checked everything over (including that raw reactive area I told you about earlier which they wanted me to keep putting antibiotic ointment on it)
Then the PA says to me “look in the other direction. Great, now I’m going to count to three. When I get to three I want you to take a deep breath and hold it.Then I’ll pull the tubes out. Okay?”
I was ready.
I can only guess this was done to keep me from screaming.
I’ll be honest, it didn’t hurt very much but it was so squick-inducingly weird that I probably would have cried out in some form if she had not surprised me like that.
Now of course that only works once. And there’s two tubes. But I played along anyway.

After the Bulbs of Bloody Fluid were gone, I had to make sure the open holes they formerly occupied were kept clean and dry. One side closed up almost immediately. The other side didn’t. For almost another week. Another call the to surgeon’s office. Not totally “normal” I’m told but not to worry about unless it starts seeming infected. Hokay.

Next up on the “things to get a little anxious about” was the pelvic incision itself. It wasn’t completely closed when they took all the staples out either but they didn’t seem too concerned about that. It was closed on the inside and I remembered from my last c-sec that that was okay. The outside would close later so long as I kept it as clean and dry as possible. I was told I could debride it occasionally but not to go too crazy with that. Debriding is when you swipe an astringent on an open wound. Its a little squicky but it doesn’t generally hurt and it appeals to the germ-worrier in me.
So two weeks after the surgery and I still had the ‘caine box and an incision that was partially open and weeping as well as a hole in one side that was also open and weeping.

Did I mention that I had to wear spanx during this entire ordeal?
Yes, compression garments are an absolute must. It helps compress the swelling, hold everything in place while you move around and it maintains the integrity of the surgery during healing.
I had never worn spanx in my life. I had no idea what to even buy when we went shopping for them before the surgery. I wish I could remember but I think we got two of a size small and later he had to go back and get me two medium or maybe it was the other way around??
The ones we got originally were so tight, I felt I couldn’t breathe and they left deep purple marks in my waist. So the husband cut a notch in the waistband. It helped tremendously.
Oh remember I said I’d stifle a cry when going to the bathroom? That was because of removing the spanx. Wearing compression on swollen tissue may not feel great but removing said compression during the healing time is a whole new level of agony. Fluids rush in, tissue swells up, gravity feels doubled and everything suddenly is just kicked up a notch or two. That means that when its times to put the compression garment back on, there’s NEW swelling to compress. Which is a refresher course in generalized pain as well. There were a few times I opted to keep the spanx off for a few more minutes just to give my body some time to calm the hell down. It seemed to help actually.

After about twenty days it was time to take the ‘caine tubes out. The bulb was pretty much done dripping. I called the office but it would be a few days before I could get an appointment to get them removed. I didn’t feel very comfortable with the notion of having the tubes sitting around in me no longer fulfilling their purpose so I asked if perhaps we could take them out. The office assured me it was perfectly fine. Just pull them out. I think there were some instructions somewhere… either verbally or in text… but the gist of it was “grab the tubes at the top and pull upwards until they come out”

And I thought the Bulbs of Bloody Fluid tubes were long? Dear gawd.
Because the ‘caine was all done, I could feel those wire-thin tubes snaking their way through me, over my organs, along the front of my stomach muscles and my diaphragm. Yay more squicky. And yes, they were bloody. The holes closed almost immediately. But I noticed the scars of the holes lasted a long time. I can still see them; two tiny spots of white.

So after two weeks, I was finally tube and bulb free but still had a open wound or two to deal with. I could finally move around upright, lie down (carefully) and go to the bathroom without wanting to stab anyone. I still needed my pain meds and I still had some serious issues with how things were looking down there but over all… I was finally recovering.

It took about two months for my incision to totally heal shut and start to scar up. I used special silicone tape that really is amazing. But I used it TOO much and it began to wear away some of my “good” skin. Still, I have almost no scarring along my pelvis. I still have some childbirth stretch marks but I could care less. The surgeon had asked me about them, if I wanted any extra work done for those and I told him “those are nothing to me; they are cosmetic. I Don’t care about cosmetic, I just want to wear regular clothes again”

It took about six months for my bellybutton scars to fade enough that I am not reminiscent of Frankenhooker.

Sadly, I did end up with the dreaded “dog ear” on one side. That is a surgical issue whereby the end of the incision doesn’t close up tightly enough and it hangs forward just a bit, kind of like a flopping dog ear. One side is fine but the other, not so fine. It only bothered me because I could FEEL the skin (barely)touching me in that one spot. The traumatic memories of the pooch probably make me a bit oversensitive about that sort of thing, though. I thought about someday going back to get corrective surgery, because I know it can be done in an office visit under local, but really, it’s not a big deal. Now I’m glad I chose not to worry about it, because it’s been nearly a year since the surgery and I’ve noticed that the “dog ear” has decreased enough to where it doesn’t look like a dog ear anymore… more just a little extra fat now. I think wearing Spanx 3x a week is still helping. Or maybe it’s the increased activity i’ve been doing in the last couple of months.

The appearance of my stomach has changed several times since the surgery. Once the swelling had gone down, while my abdominals were still tight and cramped, I actually had a sort of washboard kind of thing going on. I was tickled because I never looked like that in my life! It was kind of cool. But it didn’t stay that way. Frankly I’m glad: it was odd looking on me and it also restricted my breathing. Once my muscles loosened up and stopped cramping, my stomach became the basic round thing I’d had long before bearing children. This was what I wanted. I had not seen THAT stomach since my 20s and I was very glad to see it again. The “washboard” thing wasn’t me. I thought it was kind of interesting, but it wasn’t me. The lipo that was done is kind of interesting as well because I hadn’t realized that I could have a bit of contour to my stomach either. I suppose it is just age but I dont’ think I ever had those contours. But its subtle and I like it.

The most important thing, however, is the clothes.

I now can shop at a department store for pants and get a size 11. Low rise, medium rise, it doesn’t matter (high rise goes to my ribs) I’m still a size 11 pants. I can wear shirts that fit me now. I have a couple of dresses now and I wear them WITHOUT tights.
I bought shorts.
I bought a sexy slip.
I wear tank tops.
I put on a pair of daisy dukes (although I felt super-silly) and looked at my belly button.

I put on a bikini. And posed for a picture.

And I smiled.

Being a Tom-Boy (from the vault)

When I was a girl, I wished I was a boy. 

I couldn’t say why, just something I knew…
I knew that boys were faster, rougher, louder. Boys were everything I wanted to be. Boys could climb trees and no one worried about their clothes. Boys could play War and no one told them to mind their hair. Boys were supposed to be rude and obnoxious, brash and brave, cool and cunning, everything I wasn’t expected to be.
I was told many times I could be who I wanted, do what I liked, be anything I wanted to be. But I knew it was a lie.
I was a girl. Girls were supposed to be pretty, sweet, quiet and nice. Everything that was hard for me.
Boys were supposed to play games; swing a bat, throw a ball, run all day, hide and sneak.
Girls were supposed to stay put; play “house”, draw pictures, talk all day, smile and giggle.
I wanted to be me; running and talking, throwing and pretending, imagining and laughing.
Being free to play any way I wanted, whenever I wanted, no matter who was around.
But I knew that was “wrong”. Because so long as I ran and yelled, bossed and talked, pretended and threw balls, I was hearing the question behind me from somewhere, someone…
“why are you like that? is there something wrong with you?”No matter how many grown-ups told me to be myself, I could never miss the one grown-up standing silently by, frowning at me – the weird little girl who wouldn’t “play nice”.

They told me I would grow up to be a woman and there is greatness in women, but I was not fooled. Men were tall, had muscles, wore clothes that got dirty, fixed cars, gave orders, moved mountains and took charge of their families. Men played with their children and made noise, threw them on the couch, teased them, ran with them, got dirty with them.

Women were quiet and took care of their kids. Women told their kids what to do when the kids didn’t want to do it. Women kept everyone clean and polite and boring.

Even in the light of feminism and equality, I could see the truth. Men were exciting, women were dull.

I didn’t want to grow up to be that; clean and neat, polite and nice.
HOw could I command a pirate ship if I was worried about my hair? How could I learn the arts of Ninja and save the people from evil while minding my manners? How could I fly in a rocket ship to the moon if I couldn’t go anywhere without my toothfloss? How was I ever going to be president if I couldn’t get mad and bark out orders?
No matter how many women told me I could be president, I knew they were lying. Because I am a woman and I must keep my house clean, my kids polite, my schedule in order, my hands to myself.

I wanted to be a boy because boys grow into men and men were allowed to go outside. Men changed the world, while women cleaned it up.

Now I am a woman and everything is different. Everything except… the same things I saw when I was a girl.
Little girls still wear ribbons in their perfect little hair and get in trouble for messing it up. Little girls still get punished for being too bossy. Little girls still get evening dresses for playing dress-up instead of pirate swords. Little girls still learn to change a diaper before they are six. Little girls still get ignored and sneered at when they ask for help in math class. Little girls still receive barbie dolls for christmas without a rocket ship for her to fly.

When I talk to little girls now, I want to tell them the things that someone should have told me:
“You can act like a man and you will still be a woman. You can go out and get dirty, mess up your clothes, boss people around, take chances, discover new things and take charge of your life.

I want to tell them “you can be a woman and make mistakes and laugh at anyone who tells you it’s wrong. People will look at you funny and ask you why you are like that, but you just tell them this:

You can be a woman and still change the world.

Another Installment About Growing Up With Jarcho-Levin: AD

Okay what you have to understand is that up until a few years ago, we didn’t have a name or specific medical label for our condition. When I say “we” I am talking about those of us in the family with Jarcho-Levin:AD. That would be my father (the first), me, my brother, my second son and my third son. My second brother and my first son and my daughter are all unaffected. So although I didn’t grow up completely alone, I was the first female to have it. Now, my family of origin is a family of science-lovers. I wouldn’t call us nerds (at least my parents) because I can’t think of anything they really obsessed over. They are just science-loving people. My father has a degree in applied physics and my mother is a medical technologist and phlebotomist. I was raised with many off-beat and radical concepts – they both also being hippies – like Zen and social justice activism as a way of life, but information and knowledge was our core. Science, logic and rationale trumped everything in our household.

So when I was around 4 years old, my parents began taking me to a certain hospital that at the time was known for their research on disabilities. I have no idea what prompted it, other than most likely my parents scientific curiosity. I do, however, know what pushed it into the lengths that it went: the doctors. The doctors told my parents they could figure us out. Nobody said anything about cures or treatments, obviously there is no cure or treatment for this kind of genetic disorder, but the doctors fed my parents respect of science and belief in the nobility of medicine and the “payoff” was going to be knowledge.  To this day I wonder, as well, how much intimidation was involved. My father is not a firebrand, not brave, he isn’t the type to feed his own ire and let loose his emotions. Its the downside to being a logic-worshiping family, I suppose, but my father is also a product of his upbringing in some ways as well; he was raised in an environment where he was ridiculed for his difference, mocked, teased, and humiliated on a regular basis (until college, he says) so my father isn’t the type to stand up against someone who puts on the Big Dick In Charge act. If that Big Dick is affiliated with science? No contest.

At least in the beginning.

So this famous research hospital convinced my parents to subject ourselves to a barrage of study. Mostly, of course, that was me. Why me? Because I was a wee child and they could study my growth pattern. So they said.

So, for the next four years, I was an object of medical study.

I will tell you three instances of what happened during that study. I don’t remember much else, and neither do my parents. The few times I brought the subject up, they had difficulty recalling any details of those four years. My parents twist their faces into strained concentration and say “I don’t really remember… was it only one week?” and specific events during those four years bring “Did that really happen?”  while they try to find a shinier and brighter side of it all “remember we would take you to Baskin-Robbins afterwards?”

I know it isn’t a real questioning of my memory, but a distancing of their own culpability. Of course, I do not blame them, but I am a mother, and I know my absolution is little comfort.   The study happened and we all know that.

In the beginning, the doctors convinced my parents to leave me in their charge for a week. Maybe two weeks, I can’t remember. What I do remember is bits and pieces, obviously.  I was four. I had been living with my dad and (step)mom for barely a year when this began. They tried to explain to me that it was temporary, that they would come visit me every day and I would be fine but, you know… four years old.

My bed was in a huge auditorium sized room with at least twenty other beds and cribs all in the same “room”. I remember it was huge and weird because the walls were wood panelling halfway up but the doors were heavy steel.  The bathrooms were standard public style bathrooms, through a door on the right at the end of the room but on the left side was where all the medical people went in and out. Sometimes they came out to be with you, give you games, food, take your vitals, but sometimes they came out to take you behind the big steel door with them. This wasn’t ominous per se, because everyone who went back there came back out, of course. At least the kids I was familiar with. But behind that door, you never knew where they were going to take you. Every day, it seemed I went to a different place. So I dreaded being called behind that door.

Let me tell you why.

One time they called me behind the door. I ws taken to a standard medical exam room. I was stripped and robed and told to lie down on the table. Then whoever brought me in left. After a few seconds of waiting by myself, (hell maybe someone was in the room but i don’t remember them speaking to me) a line of people came filing in to stand around the table I was lying on and look at me. They all wore surgical face masks and caps and gowns. All I could see were eyes. and gloves. The masks were talking to each other but I couldn’t understand them at all. Their muffled speech made no sense to me at all. Someone else was talking to me, a woman, from behind all the masked people and she told me to hold still. One of masked people grabbed my arm and jabbering his muffled dialogue all the while stretched my arm out and lifted up a needle to put in it.

I freaked.

I remember, very clearly, that eventually they got what they wanted (they were drawing blood) by having three people hold me down while the main mask screamed his muffled words at me. Of course I watched that needle go into my vein and felt it so sharp I thought they were trying to kill me. I screamed, I cried, I howled bloody murder. All the while the main mask was screaming right back, and the woman behind them kept chanting “hold still! hold still! It’ll hurt more if you keep moving!”  Eventually someone got the bright idea to terrify me: they said “If you don’t hold still we’ll do it again”

I held still after that. But I cried so hard I couldn’t even tell my parents what happened when they came to visit.

Another time, they called me behind the door. I asked if I was getting a shot. The nurse was irritable and told me “no, you never got a shot int he first place! Besides, you’re just getting an x-ray!”

Ah the x-rays.  Frankly its a wonder I have gotten pregnant so many times from all the x-rays I’ve been given. We’ve got quite a few in my parents house. I have a set myself too. My x-rays are probably floating all over the country from hospital to hospital in some dusty old box of crap nobody wants to open because of  HIPPA.

So x-rays weren’t so bad. Except you had to be naked. And x-ray machines at that time were half the size of the room and made entirely of metal. Nice freezing cold metal. Also, there were times they wanted x-rays from angles I was not capable of complying with, so I’d be strapped in and the machine rotated until they got what they wanted.  Not so bad. Just tedious. You had to hold your breath for a while too. But x-ray techs were fairly nice guys and nurses were happy that I wasn’t screaming or crying so usually after the x-rays we were done and I could go back to the big room of beds.

Like I said, there were a lot of other kids there. They were there for many different reasons. Some kids were sick and were there to get better. They didn’t do much except sit in bed, get visited by the nurses and occasionally go through the door.

But some kids were a different kind of sick.

I made a friend in that room.  A little boy, I think his name was Tommy, and he was bald. I asked him  and he told me because he was sick. I think Tommy must have been a lot older than me, maybe seven or eight, but we quickly became friends because we liked the same things: cars that go fast and batman. Most times Tommy couldn’t get out of his bed so I’d bring things to him and sit on his bed. Sometimes he’d ask me to just play on the floor next to him because he was tired. I never asked much about his sickness. But I remember the day he was gone.

Children disappearing wasn’t unusual. I’d notice kids missing before. Sometimes the answer was “oh she got better so she went home” and sometimes the answer was “his treatment was done so he went home” every now and then it was “he’s in another part of the hospital now, he’ll be going home later”

Tommy was the first time they didn’t mention “home”. “He’s gone” was all they told me. I thought they meant he went behind the door. I waited for him to come back out of the door.  When bedtime came, I asked again; no one stayed behind the door after bedtime. “he’s gone, honey” was all the said. So I went to bed not understanding where he was.

I think I dreamed he came back. He was not in his bed, he was walking. His face was bright and ruddy, like he’d been running and he came in holding his mother’s hand. He ran to me and hugged me. It felt so good to hug him. We played on the floor and ran around the beds in the room.

Then I woke up and he still was gone. My parents came to visit me and I asked them when Tommy was coming back. My mom started crying and couldn’t speak. My father finally told me. I didn’t understand what “dead’ meant. But I knew by my father’s tone that Tommy wasn’t coming back. Ever. So I cried. And I believed the door was why he was gone forever. I hadn’t seen him go through it, but I knew that door had swallowed my friend up and wasn’t ever giving him back.


There were other memories of that study. Other memories of that hospital stay. Maybe not nice memories, but not so bad ones. The time I got my blood drawn and didn’t even notice because they put me in the x-ray room on a blanket and a nurse talked to me about my favorite books while the phlebotomist did the draw on the other side of me. They gave me a lollipop for that.

I remember having other friends too. I don’t remember their names and it seemed like no one stayed as long as I did but I did have other children to play with. I remember getting in trouble all the time because after lights out, I would tell funny stories to all the other kids from my bed whenever the nurse left the room. We tried to laugh quietly but it never worked: she’d hear us and come back in to shush us all. Didn’t take long for her to figure out it was me every night. One day a nurse I liked very much made mention of my stories. She looked at me smiling and told me I was making the other nurses mad so I needed to tell the stories quieter.

After Tommy was gone, I remember drawing pictures over and over. I always drew the same picture: my parents coming to get me. Sometimes I drew my dad and my step-mom. Sometimes I drew my biological mother. Sometimes I drew all three of them.

Sometimes I drew Tommy going home with me.