I get to keep driving

Had to renew my driver's license, another big worrisome hurdle for me, as it's been 7 years (I got an extra extension because of my perfect driving record - ha!), and this time I would have to take a vision test.

I put it off as long as I could.  I was pretty sure you can still drive with only one eye - Peter Falk drove that old beat-up station wagon around, didn't he? - but I was just so worried that they'd yank my license, I procrastinated like a coward.  I drive all day in my job.  No driver's license, no job.  Worry, worry, worry.

I went to the little DMV office near my home, and the wait time really wasn't that bad.  I gave the nice man behind the counter my old license. 

"Any changes?" he asked as he typed entries into his computer.  "No, everything's the same" I told him.  "Still at the same address?" he asked.  "Yup, still there" I said.  "Okay fine, now I just need you to look in here and tell me what letters you see" he said, pushing a big plastic box across the counter to me.  "Just read me the top four rows all the way across, left to right."   I read out the letters: two columns, four rows.  There was a third column, but it was blank.  To me it was blank.  A blank white column.  Empty.  No letters in it.  Not hazy, not indistinct - completely empty.  Weird. 

The nice man frowned slightly.  "All the letters, please."  he said.  I read them again, loudly and firmly.  I could see them nice and clear.  "Please read the letters in the right hand column" the nice man said.  "I don't see any letters in the right hand column" I told him.  He looked surprised.  "Are you having trouble with your right eye?" he asked.  "Yes, I have a tumor on my optic nerve" I said, very matter-of-fact.  "Oh!"  he said.  Pause.  A beat.  My stomach got very nervous.  "Oh, well, okay, I'm going to issue you a license, but there'll be some restrictions on it" he said.  Restrictions?  Who gives a flying fart about restrictions?  I get to keep my license!!!!    WOO HOO!!!

"You must always wear your glasses or contact lenses" he said  (no problem - I don't think I could find my way out of the house without them!), "and your car must be equipped with side rear-view mirrors.  On both sides!" he said sternly.  "Oh, my car has those!"  I assured him.  Oh, gracious.  Is that all?!?  Piece o' you bet yer sweet bippy CAKE, man!!!!  Yippeee!!!

Didn't I say he was a nice man?

So there we go.

I get to shoot the rifle.

I get to drive a car (or truck).

I get to keep my job.


What a relief.       

The blessing wall

This is a project of sorts that my friend and I have been working on for the past few months.

The angel, not the graffitti.

Here's my new blog about it:

http://theblessingwall.blogspot.com/

I get to keep my job

I'm supposed to qualify on the rifle range a few times a year in order to be allowed to do my job. It's a mark of how much of an afterthought we are that we haven't had any range time scheduled for the past 3 years: almost exactly the period of time during which the vision in my right eye has been seriously deteriorating. And I am right-handed, which means that when shooting I close my left (good) eye and aim with my right (nearly blind) eye. A friend who is a Marine vet told me to always keep both eyes open, but I tried that, and I missed the target altogether.

We have a new guy, and he had to qualify at range, so we all finally got scheduled to go in and prove we can hit the side of a barn for the first time since this all started for me. I was sweating bullets (ha ha) over this. I've been worrying about it ever since I noticed my vision starting to go. I thought, the next time I'm at range I will just flunk, it's that simple, and then I will lose my job, and then what will I do?

I pushed these worries to the back of my mind, but now I realize what a load it's been on me for the past 3 years.

I got to range. I tried to shoot right-handed, as I always have. I failed miserably. I don't own a gun: I don't ever practice: I'm a terrible shot the best of times. I've always shot barely well enough to qualify. Now I couldn't even do that.

The range master was really nice, and very patient. "Try again" he said. "My left eye has always been stronger than my right" I told him (perfectly true - I've been wearing glasses for nearsightedness since I was in 6th grade), "and recently it's just been getting worse" I said. (Also true!) He was very understanding, as we are both of a certain age. "I don't know what to do" I confessed. Then all of a sudden, a somewhat obvious idea hit me. "What if I try shooting left-handed?" I asked him. He shrugged. "Why not?" he said.

I shot left handed. I aimed with my good left eye. It felt very very strange, but it was totally doable. To qualify we only need to score 75%. I managed to get 86%.

I get to keep my job.

I didn't really realize what a burden of worry I'd been carrying for the past 3 years until I left the range. I think my knees actually buckled a teeny little bit. I wanted to lie down somewhere and do some deep breathing. Or take a nap.

But since I get to keep my job, I had to run right out and keep doing my job. Which I did.

YAY!!!

Health care reform

Two words: pre-existing conditions (hereafter referred to as "PEC's").

I am currently able-bodied, gainfully employed, a contributing member of society. But I am one easy job loss away from being uninsureable, just because I stopped ignoring my vision loss and went to a doctor to get it diagnosed.

Does the recently-passed health care bill change that? Does anybody know? I keep hearing about children with PEC's and how they can no longer be denied coverage, which is great, but what about non-children?

Weirdly, if I hadn't gone to a doctor but had instead just continued to live with my symptoms and worries in ignorance, I think it would have been a non-issue, insurance-wise. Even though a slow-growing, non-malignant tumor must have been there for years anyway. But as long as it wasn't official, it wouldn't count as "pre-existing". Even though it did exist previously.

Crazy.

Been a while

I'm still fine. Isn't that nice?

YAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

No growth, no change, "remains stable". "Not significantly changed in size", "within normal limits", "no new abnormalities", "stable size, appearance and extent".

No surgery!

Whoopeeee!!!!!!!!!!

We now return you to your previously scheduled life.

3 month MRI

Oh, the irony. Friends and family kept offering to take me in for my MRI. I had to keep telling everybody over and over again, "No, thank you, MRI's don't bother me, no really they don't, no really, really, REALLY! I'm fine by myself, no really, really, REALLY! No, I don't need a ride to the MRI center, thanks so much, I'm fine, REALLY."

Then my car broke down.

Well, I had to scramble at the last minute to get there in time, but I got lucky twice and made it there only a little bit late, and back home safe and sound. But how funny is that? All those offered rides, and all those "no thank you, I don't need it", and then lo and behold, I did need it. Hear that faint giggling in the background? That's the Universe, laughing at me.

The MRI still didn't bother me. I got the same technician I had my first time, the one with the feather-light touch. I listened to the spacey sounding noises and napped a little. But there was more irony in store. The MRI center has changed its clothes policy since I filled out my comment card that first time , and this time the nice technician just asked me "Does anything you're wearing contain any metal?" I was already prepared with my metal-free comfy clothes. Except that it was too cold to wear my thin cotton elastic-waisted pants outside, so I wore regular pants (with a zipper) en route, and carried my comfy pants folded up under my arm. But one of the folded corners of my comfy pants somehow got wet, so that when I went inside the dressing room to put them on, they had a big wet splotch nicely repeated eight times all across where they'd been folded. So I had to wear those horrible oversized men's open-fly hospital pants anyway. Horrible, horrible, horrible pants. But I heard more of that faint giggling, and this time I laughed along, instead of getting all bent out of shape about it.

Of course none of this matters. What matters is whether or not my little upstairs visitor has grown. I'm on my own finding that out, as my esteemed neurosurgeon can't see me for nearly a month. Here's hoping for good news.

And oh yeah, there's all that way cool stuff going on down in Washington DC today. I've been listening to the radio all morning. Let me just say this:

Yay!

What to say

I am thinking things I cannot post regarding old friends.

The gist of it is this:

I have a brain tumor. Yes, it is benign. THANK GOD!!!!!!!!! (Thank You, God!!!!!!!) Nevertheless it threatens my vision, my functioning, my life. I try to put on a brave face, but in my darkest moments I am scared shitless. When I share this information, which I do SPARINGLY and only after much thought, I am hoping for some acknowledgement of the gravity of this (to most people, myself included) horrifying diagnosis.

Failure to acknowledge this gravity is painful to me.

But I also understand that most people will be so flummoxed on being told that they honestly won't know how to respond, and as a result, may come up with words that are well-meaning but end up being the opposite of helpful, just because they lack practice at this sort of thing.

And honestly, I don't really know what to tell them either.

But I will offer some canned responses that would actually be soothing to me to hear:

"Oh my God, how horrible!" You'll probably be thinking this, but would be mortified to actually hear yourself saying it. Go ahead and say it. I'd be gratified by your outburst. I thought the exact same thing when I was first diagnosed. To hear you saying it would let me know that you felt the same as me, and that's actually rather comforting.

"Oh, no, I'm so sorry to hear that." Expresses simple human sympathy. You don't need to be eloquent. This is plenty.

"How are you doing?" Same as above, but more so. I don't care if you mean it or not. I don't care if you are sincere or not. These simple four words say "Hey, I see you're going through something big, and I acknowledge that." I can of course only speak for myself, but personally, to hear these four words is really all I want. I am going through something BIG. No, it's not malignant (THANK GOD!) No, I haven't had surgery (... yet? ... ). But it is still BIG and SCARY. All you have to do is acknowledge that, and I'll feel that I've been heard and understood. I think deep down, that's the bedrock minimum of what we really need from each other. Hey, I'm tough and independant. The minimum is plenty for me.

Now that I've told *you* what to do, I hope that *I* will always remember this advice myself, as well.

Because we are all mortal, fragile, subject to innumerable disorders, aging, and death. At some point or other, you, and everyone you know, will experience this first-hand. In the beautiful words of the Flaming Lips:

Do You Realize
that everyone you know
Someday will die
And instead of saying all of your goodbyes
let them know
You realize that life goes fast
It's hard to make the good things last
You realize the sun doesn't go down
It's just an illusion caused by the world spinning round

In parting, I'd like to point the 3 people on the planet with Internet access who haven't seen it yet to a series of videos that I, even after more viewings than I can count, still find endlessly hopeful and inspiring:

http://www.wherethehellismatt.com/videos.shtml?fbid=REHKjXy9IbP

Enjoy!

Doctors without calendars

What is so hard about keeping an appointment scheduled 3 months ago? My neurosurgeon's office just called and told me that Dr. Whosits can't see me as scheduled because he'll be out of town. What, did he win a cruise or something? Heard the blizzard warning they issued this morning on the heels of the 10 inches of snow we all just dug ourselves out of this past weekend and decided he can't take one more minute of Chicago winter weather?

Soonest he can see me is Feb. 12. Great. I get an extra two weeks to work on cleaning out my closets and trying not to worry.

Doctors! Sheesh!

Getting ready

Just short of two weeks to go now before my next consultation with the neurosurgeon. (The MRI itself doesn't bother me at all - I slept throught the last one. It's the consultation I'm worried about.)

If he says I have to have surgery, I will get a second opinon, and if the second opinion thinks so too, well then I will need to get my life in order. Which is a daunting task, because my life has always been a disorganized mess.

I've started. I started seriously cleaning house last month, because I had a houseguest coming in over the holidays. That helped a lot.

I've done even more since my houseguest left. Walk in my apartment now, and it is just about as clean and orderly in appearance as any reasonably adult home you might visit.

Ah, but don't try to open any closets or drawers. That's where all the chaos is stowed.

Next on the agenda: clean out all that storage space that is crammed to the gills with 50 years' accumulation of junk I no longer need. Now that's always a worthy project for most of us posession-glutted Americans, isn't it?

Wouldn't it be super duper fantastic if I get all this cleaning, decluttering, and organizing done, and then find out that I don't need surgery, after all? Wouldn't that just be nifty keen-o?

Sticking to the script

So I heard from another old friend. New Year's is a time for that, I guess. We haven't spoken in a year or more, but we used to be quite close. We had a long lovely chat, catching up.

I always find myself in this internal debate these days, who to tell and who not to tell. It keeps coming down to the same thing - as long as I don't have to have surgery, nobody else has to know. So far no surgery is scheduled. But my 3-month MRI is coming up fast - Jan. 19th - and then neurosurgeon number 2 will tell me if I can keep going just like this, half-blind but otherwise unimpaired, or if I'll have to have my head cut open. It's such a huge, looming Date With Destiny in my mind, and it gets bigger and more looming the closer it gets. So all the time I was chatting with my old friend, there's this upcoming date in my mind, looming. I kept going back and forth, should I tell him or shouldn't I?

We used to be very close. We were catching up and talking about things close to each of us. It started to feel stranger not to tell him than to tell him. So I told him. "Oh wow, that's awful" he said. "I knew a girl who died of a brain tumor" he said.

Oh. Now that's a response I haven't heard before. "Oh, gee, I'm sorry" I told him. Um, so, well thanks for those words of encouragement, I guess. "But it's benign, right?" he asked. "Yeah, it's benign, THANK GOD" I remembered to say this time.

So, good for me. I stuck to the script.

But I am kinda sorry I told him.

My script

Today I got a call from my oldest friend. She's a nurse. I'd been wanting to call and let her know about my diagnosis, but we haven't talked in about a year, and I felt a litle awkward. But since she moved to a distant part of the country, we'd always retained a connection, especially for some reason around New Year's, and so today she called me. Yay! She told me what's new with her - she's had an eventful year - and then I told her what's new with me.

But after I told her that it's benign, I forgot to say "Thank God. Isn't that great?"

Because benign, troublesome though it still may be, is GREAT.

Let me not forget that!

Time

When I first found out about this thing, it hit me like a pound of herring*, and I felt like a different person. Different in some unexpectedly but also slightly cliche good ways. Like, reordering of priorities, consciousness of mortality, appreciation of "the little things", true empathy with anyone in suffering, etc. etc. Just basically a more conscious and appreciative and kinder and deeper person. Good things, right?

But two and a half months on and still in "watch and wait" mode, I find myself becoming complacent and forgetful. Wanting to be a deeper person but not wanting to have to actually suffer to achieve it.

Next MRI scheduled for Jan 19, consultation Jan. 22. I'll find out then if I have to have my head cut open or not. Whether or not I'll have to experience some more-or-less real suffering. Hopefully less!

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~


*(just trying to come up with an alternative to the cliche "ton of bricks")

Forgetfulness

For the life of me, I cannot remember what I was going to say.

Living alone

I love living alone. I never feel lonely. I am selfish and self-absorbed, so it suits me. Nobody to have to consult with, nobody to have to negotiate or compromise with, nobody to get in my way. I do what I like when I like. Watch tv at 3 am, sit around all day Sunday in my pajamas, leave clothes hanging on doorknobs, or in piles on the floor if I feel like it. Eat, don't eat, cook something yummy for dinner, or nibble on leftovers standing at the sink. Whatever I feel like doing. Clean house, don't clean house, whatever I feel like doing. Company coming? Then I clean house. Just me and the cats? They don't mind the dust, neither do I.

I am not lonely. I don't have a man in my life, and don't feel the need. I'm 51 years old, a confirmed old bachelorette, and likely to remain so (to paraphrase Henry Higgins).

And yet the prospect of surgery and of lengthy recovery without anybody to help - well, who knew. Serious illness wasn't something I was thinking might be a possibility. Who thinks about that? I never did.

Ah well. What can you do? This has been my path, and I wouldn't change a thing. I'm a proud old spinster and I'll manage somehow.

Me and Kate Hepburn. Yeah right.

Mental state

I'm bad. I'm so bad. Ever since the diagnosis I've had trouble taking my job as seriously as I should. This is really, really, bad, because lives depend on my doing my job well. The lives of animals, yeah, but if I didn't think those were important, I wouldn't be in this field. And it's not like I'm blowing off my responsibilities. But I can't seem to shake this sort of obsessive inward focus, this amazement and worry about my brain and my future, and everything outside my own skull just seems somehow a little less compelling. I don't want to go to work. I just want to hang out with the cats in my sunny apartment all day, puttering around, taking it easy. It's almost as if I'm already thinking of myself as in post-op recovery, because if I have to have surgery, that's sort of what I vaguely envision it as being like. (Except of course that I won't be able to bend over or lift anything or cook or do any housework or laundry, and I'll be tired all the time, and have to sleep with my head elevated, and be on a bunch of drugs for who knows how long. Etc. Assuming everything goes well, that is! But I digress.)

This is the PRECISE thing I did NOT want to find myself doing! The self-absorption of the seriously ill - I've seen it so many times in my family, and I didn't want to be doing it myself, especially since I have such a strong Leo tendancy to be self-absorbed all the time anyway. And now look at me! Self-absorbed to the max! Fight it though I do, as hard as I can, yet despite all my best efforts I'm doing it anyway!

Aaagh! I can't stand myself!

Fear? No fear? Fear? No fear?

So when I'm feeling fine (and complacent?) am I being brave or head-in-the-sand? Am I "ill"? I have a golfball-sized benign brain tumor wrapped around my right optic nerve and right internal carotid artery. If I doubt that, all I have to do is close my right eye. Yup, there it is. Sometimes bigger, sometimes smaller, blank fuzzy gray blind spot. That's my "benign" brain tumor, choking off my right optic nerve. But other than that I feel fine!!! Denial takes hold. Friends and relatives worry and ask me "How do you feel?" I feel FINE. Fine, I tell you! Just fine!

It's so weird. Here I am with this big scary diagnosis. But I feel fine. Really. I do. I feel fine!

Not telling

I got a joke email from someone I barely know that had a stupid reference to brain tumors in it. I refrained from emailing her back. Yay me!

Vision

Got my new bifocals Friday. Whoo-ee! I can see again! Indeed, everything is so supernaturally sharp and clear, it almost doesn't look real.

I am enjoying the heck out of my new surreal vision!!!

Telling

My sister told my 20-something neices, even though I didn't want her to. I am fine so far. They have so much on their plates, both of them. They don't need to be worrying about me, especially since I am just going about my life for now. I tried my best to reassure both of them. I hope they are reassured.