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.