dreaming new dreams

I am a zebra. In medical schools doctors are taught that when they hear hoof beats think horses, not zebras.  This is well and fine if you are a horse, but I’m a zebra. You see, zebras are people with rare diseases.  In 2006 I was diagnosed with Cyclical Cushing’s Disease.  It is a a rare variant of a rare endocrine disease that there are all together too many doctors who don’t believe it actually exists.

Oh good.  Just my great luck to get something that literally only a handful of doctors understand.  Cushing’s is one of those diseases where the official stats are something like 10 to 25 people out of a million get It, but I have met several people that I just knew for sure that they had Cushing’s; their hump was a dead giveaway.  Yes, that’s right, a hump.

In addition to the hump, I had a “moon face” where my face was so swollen it was twice the normal size, massive weight gain, cystic acne on my chin, a beard, male patterned baldness, wide stretch marks and my periods were screwed up on top of everything else.  These were only the outward symptoms; imagine what was going on beneath the skin.  The depression was overwhelming at times, and don’t even get me started about the insomnia.

In the most simplistic overview, Cushing’s Disease is too much cortisol. The pituitary gland, in the brain, is the master thermostat for the body’s hormones and steroid production.   The pituitary gland sends out chemicals to alert the adrenal glands, on top of the kidneys, to pump out the right amount of cortisol, a steroid.  In Cyclical Cushing’s Disease, a tumor tries to take over the functions of the pituitary. To make things even more complex, the tumor typically is not a well defined mass, it is usually a puddle of white goo involved in a complicated feedback loop where everything gets messed up. Puddles of goo do not show up well on MRIs or CT scans.   There are several types of Cushing’s, but I’m making this as simple as I can.

It took me a long time for me to get used to the idea that I had a brain tumor.  Note, I didn’t say brain cancer, I said tumor.  The surgery to remove the tumor didn’t cure me; I have a tumor somewhere else. Maybe in other parts of my skull, my brain or perhaps the tumor in my lung is another Cushing’s tumor. It just needs to be a few cells worth of tumor to wreak havoc.

There are many doctors out there that will tell you that it is impossible to have Addison’s and Cushing’s at the same time because they are polar opposite diseases. Addison’s is not enough cortisol while Cushing’s is too much. Some Cyclical Cushing’s patients achieve the impossible.

I would start the week in an Addisonian state, a Low cortisol state, and sleep for about 36 hours at a stretch.  I would slowly arrive at the “Normal.”   A place I felt balanced and sane.  But Normal would only last a few days before I would end up with so much cortisol pumping through my veins that I would be in a High and not sleep for 40 – 50 hours at a stretch.  Trust me, you really don’t want to be awake for 70 – 80 hours at a go, things start get freaky right about then.  Then as if a switch flipped, I would be flung back into the Addison state. It was a horrible, terrifying loop that I could not break. I would be flung off the cliff where I would lie broken and battered amid the rocks, only to be compelled to race back to the top crag as soon as I could move.  I was in this cycle for months, every week was the same terrible pattern.

Since we couldn’t find the trigger, we had to take away the ammunition.  In December 2006, I fairly bounced into the hospital to have both of my adrenal glands removed. Five days later, I needed a walker to go as far as the bathroom. This is major abdominal surgery, bilateral adreanalectomy, and by comparison the brain surgery is conservative.  I now have Addison’s Disease full time, instead of switching back and forth between Cushing’s and Addison’s.

Now I just lie at the bottom of the cliff, still battered but now working myself up to get ready to head out on the plains instead of racing to the top of the precipice to hurl myself out into space.

My skin is now beautiful and flawless, well, for a woman my age anyway. I no longer have male patterned baldness and my hump is shrinking. Where once I would run my hand through my hair and come away with handfuls, I now hardly lose any.  Once again my hair is thick and curls softly.  My face is still round but not freakishly so but I haven’t lost any weight.  I still have days with the near crushing fatigue, but now it is near and not totally crushing.  But the best indication that I’m getting better is that my PCP no longer feels that I’m going to keel over dead in her office.

I just started growth hormone therapy and I have hope that that will go a long way to help me feel better, to recover.  While I don’t for a minute believe the hype that it will make me look younger, I do believe that it will make me feel like I’m 50 instead of 80. I’ll take feeling a little older then I am over a lot older.  Because I don’t have a pituitary gland anymore, growth hormone is just one of the hormones that I need replaced. From what I’ve been lead to believe, wound healing is a good thing.  I currently have a few minor scratches from my new kitten, these minor scratches still have not healed after more than a month. This is a problem.

So, that is my major chronic illness and how it effects me.  Compared to that everything else is relatively easy: the asthma, the near constant nausea, a near shot immune system, and  the onion of pain with its many layers, the fibromyalgia, the costrocondritus, the pancreatitis, and the brutal headaches that make my migrains look like simple tension headaches.

I am just one giant game of whack a mole, but I’m never sure if I’m the hammer or the mole.

I am no longer surprised when I wake up in the morning.

I first heard about NaNoWriMo a week after NaNo 2005 started.  Writing a novel hadn’t really been in my plans until after I retired. But as soon as she explained what it was, I was hooked. I quickly realized though, that with my over loaded class and work schedule I wouldn’t have time that year.  I don’t even remember what that novel was going to be or where the notes are. But I was hooked; I had swallowed the lure of becoming a novelist.

Even with the Cushing’s tumor growing, eating my pituitary gland, I thought I could handle everything, but that was before I got really bad. I eventually had to take a leave from school, from my health, my dreams.

For the next few years I felt like I was Eddy the Eagle. I attempted NaNo06 and almost reached 20 thousand words. I was interrupted by brain surgery and have not made it back to finish that novel.  I realized that I was too sick to even attempt NaNo07, and NaNo08 saw less than 300 words.

But then NaNo09 rolled around. I felt energized the way I had for ’05 and ’06. I was going to shoot for 30 thousand words, not the whole 50K. I thought for sure that I could hit my goal since I had the whole month instead of a few weeks.  October was spent carefully plotting out a re-write of my NaNo’06 Novel “Shades of Grey.”  Or rather, October was to be carefully spent that way. Instead, the second week I stopped sleeping. After I hit about 80 hours without sleep, Wednesday, one of my doctors sent me to the ER, I got about three hours of sleep after being shot full of sleepy time meds and steroids, and then I slept for just over two hours that night, but the insomnia returned.

Thursday morning, I got a frantic call from a distant friend I’ve known since the 8^th grade, wanting to know if her 14 year old daughter could come live with us. Serous bad juju going down at their place, several hundred miles away. Not knowing if I was going to get a hellcat or a kitten, I did the only thing I could, I said of course.

So, I had to carve out a bedroom for my new foster daughter. The only place to put her was my studio/guest room. This is also the room my husband just stuffs stuff when he wants it out of the way.  I had to figure out where I was going to get the energy to clean up, clear out space for someone who was going to be staying a long time.  Like permanent. Gulp.

I got the room ready, and then it was time for NaNo09. I was ready. I had my beloved story all plotted out, the re-write was going to go off without a hitch. Every scene was noted and all characters were done to the point where I had their horoscopes plotted and their back story back a generation. I was set. I was ready. I was go. All I had to do was wait for the stroke of midnight, November 1, 2009 and I was going to be writing. I was going to finish my dear story that I had started three years previous.

And then I read Chris Baty’s “No Plot, No problem.”

I realized that I couldn’t re-write my beloved “Shades of Grey” for NaNoWriMo this month.  I couldn’t write it because I love it.  I am invested in it to the point where I don’t want to take risks with it. I cannot imagine killing off my characters because I am so emotionally attached to them and the story. NaNoWriMo is 30 days of literary abandon. To me that says writing full bore, petal to the metal, to hell with the speed limit, road trip!  I had to come up with a new plan.

On Halloween night, 12:05 A.M. we walked into the Denny’s restaurant for the Seattle Write-in, my first one.  I sat down with my pad of paper and my pen and just started writing. I had no clue where I was going to go or what I was going to write. All I knew was that I was going to write about 30 thousand words towards a novel. I knew that I likely would not finish, but I was going to give it my best shot. I was going to write like I dance even when people are watching. I was just going to do it.

I wrote about 1,300 words, five pages of my cramped writing in the two plus hours we were there.  The next morning I transcribed what I had written and then wrote until I had two thousand words.  I wrote 2,000 words a day and more daily until my foster daughter was to arrive, I gave myself a nice cushion because I knew I wouldn’t be able to write the two days the mother was with us.  I gave myself enough of a cushion so I could start writing big again on the weekend.

But I ended up being completely wiped out by everything. I couldn’t even get out of bed Sunday for more than a few minutes at a time. I had no energy to even sit at my computer and read my boards or check email. Not writing anything on Sunday put me behind, then I couldn’t write Monday or Tuesday either.  I didn’t get anything written Wednesday, but because I was still in bed, I decided to write more by hand and I was actually able to catch up.  I wrote for a little at a time, 15 minutes here, 30 minutes there.  Just writing when I felt up to it.

Then I would transcribe when I felt up to sitting at my computer. I might write some at my keyboard, but mostly I handwrote large sections while I was in bed.  I wrote 50 pages of my novel by hand with pen or pencil in an old battered spiral bound notebook. Sometimes the big challenge was to read my own writing.

The other thing that made a huge difference in my word count was finding the right music for writing.  I thought that something nice in the background would be the perfect soundtrack. Maybe something to soothe my jangled nerves.  Nope, it turns out that for this novel, the right music was surf guitar. Dick Dale, The Safaris, The Trashmen, The Ventures, their staccato notes were echoed by my fingers flying across my keyboard. I hit 9,000 one night. And I knew I was not going to write 30K. I was going to finish. I was going to win.  I was going to complete my very first novel.  My final word count for “Halfway to Dreamland” was 52,198 words.

One of the big things I have learned from my disability is the importance of community.  I don’t know if I can even put it into words. Just knowing that there were other people who hurt, who struggled daily, helped.  I watched in amazement as others just seemed to explode into a cascade of words, like a sky rocket of ink.  I really felt emboldened by their success. If they could do it, if Robert could write something like 400,000 words then I could write my 50K.  If RovingJack could write his novel in three days then I could write mine in a month. One after another, so many people in the disabled writer’s thread turned purple or green. It was truly inspiring.

I learned that I really do love words. That writing is like drawing only with a different type of brush and a different pallet. I surprised myself by winning. I love that I have written a novel. I don’t know how good it is, but it is mine. No one else could have written it. But I love it with the same intensity of the first blush of love, where I am giddy and silly and want to leap about the house, jumping on the sofa like when I was five.

I learned that if I can write one novel, I can write another.