Improbable Phrases

Who says that?


Keeping Tabs

This morning as I was administering a fairly rowdy session of word games, I realized that I was standing in front of a student’s desk without a cane. Where was it? How had I gotten over here?

It’s uncommon for me to lose track of my cane. Despite a year and a half of physical therapy, I simply cannot do without it. When I started physical therapy I was sure that it would simply be a matter of time. After a while in physical therapy it became clear to me that my center of balance was different. I didn’t look different, but everything had shifted slightly.

I can’t really put full weight on my left leg. I would have to brace myself against a table to do that. I don’t know if it was always that way. Until I had lost function, it didn’t occur to me to have a baseline. My left hip occasionally pops in and out when I walk up significant hills. Again, I don’t know whether it was always that way.

This bothers me, the not knowing. There’s nothing I can do to fix or change it and it rankles. Shouldn’t I know my own body, my own limits? I know it now but it isn’t the same as knowing what the shift was. Where was the change?

Time was when I would have seen the ability to accidentally misplace my cane as a proof that I need it less. Twelve years after the surgery, it’s just an annoyance. I know I will need it, why can’t I keep track of it? I don’t know if this is the same as acceptance of my disability, but today that’s what it felt like. A sure knowledge that leaving my cane at another student’s desk wasn’t a sign that everything was changing and I’d walk normally again, but just that I was distracted.


The Fault in Our Stars Trailer

I am most excited for one movie this year: The Fault in Our Stars. I love that book so much and can’t wait to see what the movie version is like. The author of the book has given the movie his stamp of approval, so I’m not worried. Except that I’ll cry in the theater. It comes out in the US in early June and I definitely want to see it when I’m home.


In Fire Reborn

Several years ago I decided I was tired of my life being over. I needed to figure out how to live with what I had. What I had, so far as I was concerned, was a body that I wasn’t happy with. How was I going to reconcile myself to the idea that I would never walk properly again? I had no idea. So I went to therapy.

My first therapist had an agenda. She would make sessions fairly difficult. What was wrong with me, how was I fixing it, everything I mentioned in passing we had to discuss at length, etc. When the practice she was with ceased to exist, I was referred to someone else in the Loop, who was fabulous. She was a student, but to me, all that meant was that we were a little closer in age and it was easier to talk. It was while I was seeing her that I decided to get a tattoo.

I have a theory that as you age naturally your life and your basic self slides through a series of incarnations, like a snake shedding its skin. It’s when your life as you know it is over in a second, and you continue to live anyway, that things are much more like the transformation of a phoenix. A phoenix ages, self-immolates, and comes back as itself again from the fire and ash of its own death. I lost a life in 2002. The life I have now is, like the resurrected phoenix, born out of that time of fire and ash.

The problem that I found was that once I was out of the time of true fire and ash, where I could not take care of myself, I looked essentially the same. So, why wasn’t I the same? Steps were taken in both the medical and spiritual quarters to fix things. The physical therapy and healing prayer I received at the time were all done with the intent of patching things back up and setting me out to be the same as before. What no one realized, and what it took me years to realize, is that the old life was dead. Gone. Lost in the fire and ash. I had to decide to live the rebirth and build my life on that.

And so I got a tattoo of a phoenix to remind myself of the change and the loss that together created what I am now.  I had it placed under the curve of one of my surgical scars, as a reminder that the old life is gone and the new one will bear me forth on wings of its own.

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The only one in Asia

I’ve never really gotten used to the idea or the reality of having such a visible disability. I have come to the point where I accept that it is there, but I can’t seem to get to a place where I am so used to it that I don’t notice. Maybe it’s not possible.

Worst case scenario, for me, is public staring. I get a lot of double takes just by being white. Being disabled as well makes it more likely that I will get blank-eyed, much longer than comfortable, staring from total strangers at the mall. I have caught people craning their necks to get a longer look. So that’s fun.

Indonesia, by and large, is a culture based on conformity. Everyone should want the same things, do the same things, wear the same things. No one wants to stand out. So when someone does stand out or look different, even by no fault of their own, there is intense interest on the part of everyone else. There’s also the tactic of essentially shaming people back into line, but that’s a subject of another post.

The sense that I get is that conformity is so intrinsic to the fabric of the culture that it makes it difficult for people to accept things that might be new or different. Everybody has a BlackBerry phone. Why do you not have a BlackBerry?  Everybody is wearing white polo shirts, having cake, going to watch the kids compete in non-mandatory games….etc. Why aren’t you doing the same?

The last time I have felt this strong of a push to fit in and be part of the crowd was junior high. I wasn’t good at it then either. And in this case, I can’t. To be perfectly honest, I’d love to be able to do it. But wishing doesn’t make the disability go away.

I read: Sisterland by Curtis Sittenfeld (A novel about psychic twins. There was a shocking turn at the end that made the pacing seem uneven. But it was well worth the read anyway, even if the narrator seemed rushed in the last 2 chapters.)


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Lightning

As time goes on, it becomes increasingly clear that lipomyelomeningocele is not like other types of spina bifida. Other types have a genetic component or a nutrient deficiency component. As I understand the latest studies, lipo has neither. It’s the neurological equivalent of the universe giving you the finger. The odds are akin to winning the lottery, being electrocuted, or successfully completing a Rubik’s cube unassisted.  It is, however,  more common than being turned into a magic pebble.

Essentially, what you have is a disabling condition with no known factors. Isn’t that nice?

Show me a child with a diagnosed lipomyelomeningocele and I will be able to show you a child who has had multiple diagnostic tests: X-Rays, MRIs, CT scans, diagnostic ultrasound, various urological exams, gait studies, and on and on. It’s unlikely that you will be able to show me a child who has not had at least one major invasive surgery.

As with all things that are vague or have no known factors, research is done. Now, listen. I am not down on the medical community. They’ve been doing their research and ruling things out. They’ve been ruling out left, right, and center for the last 20 years. But, really now, can we not rule anything in?!? Why is it that the dots just seem to be getting further and further apart here, with a vague uncertainty on my part that there may ever be a line long enough to join them together? Is it just that cosmic finger, flipping the metaphorical bird?

Because I am tired. Just tired. Something about the idea of being the proud owner of a moderately debilitating disability that cannot currently be prevented in subsequent generations with any medical surety does not fill me with joy. Isn’t that interesting?

I find occasionally, through Googling (which I do not recommend) some things about spina bifida that give a sliver, an instance of hope. It comes in unlikely places. For instance, I was heartened this week to discover that Stephen Colbert was the guest of honor at last year’s major spina bifida fundraiser in Washington, D.C.  Way to go, spina bifida community, on getting someone with current pop culture clout to be involved with fundraising efforts! Or the fact that Gordon Ramsay, that foul-mouthed, ill-tempered bastard from Hell’s Kitchen raises money on a regular basis for the UK’s spina bifida association. That floored me. Other than loving his dear diminutive mama, it may be the only genuinely nice thing the internet has accused him of doing.

The raising of the money and the seeing of results, however, are clearly two very dissimilar things. And yet, is it too much to wish that something can be done to save another generation, another child, from being mysteriously struck by this neurological ‘lightning?’

I read:

Good Bad Mother by Ayelet Waldman (Love. Just love. How soothing her voice must be to women who are actually mothers.)
Good Omens by Neil Gaiman and Terry Pratchett (Hysterical. I had forgotten that this was the only work by Terry Pratchett that I enjoyed. Loved the old time definition of the word “nice” as something that was overly “precise.)


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Fruit and Fabric Foibles

So, yesterday I went to a local fabric place, the Textile Warehouse.

Two and a half blocks into my six block walk, I had seen a green object in the street, but I was listening to Nizlopi, humming along and I forgot about it. So I go to cross that intersection, and what do you know? That green object in the street is slippery! I fell directly onto my left hip in the middle of the street. In the split second after I fell, I looked down and thought: Is that a cucumber? No, I think that’s a lime.

See, I live in a Latino neighborhood, and people buy bags of limes to put in their cases of Coronas.  Apparently this one didn’t make the cut. Or! Conversely! This was a beer-soaked lime I fell on. Anyhow. It gets…better? I’m going to use the word better loosely.

Before I can scramble to my feet, I hear a car pull up to my right.  And it doesn’t sound to me like it is decelerating, likely because they haven’t seen me lying on the tar. And I’m thinking my obituary is going to say, “She died due to injuries incurred in a car crash following a fall onto a stray lime.”  Or maybe a tombstone: “She looked both ways, but not down. Reader, take heed.”  But the car stops, closer to me than I’d like, and I get up and walk off. Like you do, pretending that nothing has just occurred here, I can’t imagine what you’re looking at. Safely to the other side of the street and on to my destination. Someone from across the street watched this happen, but said nothing, and for this I am eternally grateful.

Anyhow, back to the Textile Warehouse.  There are several floors of fabric, very loose organization and it. is. not. clean. Though, it’s not the fabrics that are dirty. It’s just…everything else. Also, if you don’t know what you want, it is daunting. But! I knew what I wanted! And it was only moderately helpful. I asked one person, who told me to ask someone else, and that some one else told me it was in the basement. And when I went to the basement, I nearly died.  Again.  The fabric wasn’t  folded over on the bolts. It was full width on 60 inch poles. I am 58 inches tall, so the fabric was taller than me. What *on earth* would I do if I found anything I liked? This was not going to work.

As I contemplated my doom, one of the men who presumably worked there came over to ask if I had found the type of fabric I was looking for. I told him I had, and he vanished almost immediately behind a row of bolts. Crap. I found an aqua jersey knit that I wanted, and I walked around in pursuit of him, sans bolt. Maybe he’d call somebody, or maybe he’d carry it upstairs for me! Optimism, huzzah! I found him near some shimmer organza (it looked like fairy tutu material) and I asked him about getting the fabric upstairs. He said David would do it. While he was standing thisclose to me, he shouts

DAVID!”

And I nearly die a third time. As I scramble to reassemble the fragments of my last shattered nerve, David shows up and carries the bolt upstairs for me. I pay, leave, and head home with no issues.

The damage? Less than $15. And a really gnarly black bruise with green edges.


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Everyone Kept Their Distance!

This past year I was introduced to SMITH Magazine’s 6 word memoirs. In the spirit of both a short blog post and a dip into the memoir form, I have the following 6 word memoir from my trip to and from Denver this past week:

Not patted down.

It was miraculous.

I read:
In Other Rooms, Other Wonders by Daniyal Mueneedin (Collection of short stories. I really liked them. Even if most of them were fairly sad.)