Out of the valley of death... (cue dramatic music)
Okay, I’m back in the blog saddle at last, after a few months’ hiatus where I’ve been recovering from this extremely difficult year. So, this’ll be mostly a catch up session. Apologies in advance for it being so long!
It began, as you probably know, on January 24 when I went into hospital for a straightforward partial knee replacement surgery. I’d injured the knee a few times over the years… once landing the wrong way when parachuting, and others during my acting career, (mostly a couple of runs of Macbeth where I played the goddess/witch Hecate) when I’d throw myself fervently to my knees on all kinds of cement and wood surfaces. I remember at the time thinking, “I’m going to pay for this somewhere down the line.” Didn’t think it would be quite this soon, but there you are.
I’d had a few difficult years as the 2000’s progressed, where I felt less and less well, with no explanation. I hid it successfully, which turned out to be detrimental to the extreme. Unfortunately, doctors and people in general had no idea how much effort I had to put into the slightest thing… such as attending conventions, signings, dinners, parties, or traveling anywhere. There was never a time I wasn’t trembling with my heart racing and feeling light-headed and fatigued.
There turned out to be a perfectly good explanation in the end, of course. But it still defeats me how a great many physicians and specialists could miss the fucking obvious: my thyroid was out of whack because of antibodies attacking it. Somehow, all these professionals who boast about how superior their health care is… well, over a period of 7 years they totally missed it. It took a naturopath in my small home town to run the right blood test. A simple antibody test, which if had been run in 2003 when all this began, would have clearly shown that I had an autoimmune disease named Hashimoto’s. Thanks to a caring neighbor and friend, Bridgette Dever-Storey, who noticed how frail and ill I’d become by 2010… she took me to that naturopath and we finally discovered the name of my enemy. And once you know your enemy’s name you can fight him.
On thyroid medication, I began to improve gradually, but long story short: Hashimoto’s doesn’t keep steady symptoms, and one can flip-flop from hyper-filled-with-hysterical-energy to hypo-God-I-wish-I-were-dead apathy and exhaustion.
I lived, I wrote. I laughed, I cried, and carried on as best I could. One thing I noticed after that, was that certain of my friendships were bordering on toxic. So I learned to phase those friendships out when the person proved to be too demanding, too needy, too taking without giving, too thoughtless. This was one of the hardest things I’ve ever learned to do. For I love people and hate to cause pain or offense to anyone. However, trying to keep everyone happy was pretty much killing me. Particularly when their behavior was SO damn selfish as they took my friendship and generosity for granted. I think a friend calls people like that ‘psychic or emotional vampires’.
Funny, almost the first thing I tell people when friendships start out is the one behavior I won’t tolerate is being taken for granted. Some people must have thought it didn’t apply to them, as they blithely did things like expecting me pay for just about everything, or keeping me on the phone for hours at a time when I’ve made it clear to the world that I find talking on the phone for more than half an hour a waste of my time and energy. Or they just were like brick walls with their emotions, leaving me wondering from what outer rim planet they came from. People who consistently leave you wondering what in the hell they’re thinking and if you try to discuss it, you end up feeling you’re the one with the problem…. Well… best not to continue banging one’s head against the proverbial brick wall, right?
Moving on… the next chapter. I came out of the knee surgery very well and expected to spend one night in the hospital and get home the next day. It was early evening before I came out of recovery, and had missed dinner. I feasted on 3 puddings and settled down for the night in my hospital room.
As usual, my heartbeat hammered in my ears and chest, and showed no sign of slowing down. For a few years I’d been forced to take prescribed sleeping pills to get my body slowed down enough to fall asleep. But I never got enough sleep, and always felt tired. I didn’t have any with me, and I assumed the sugar-filled desserts were making it worse, so I resigned myself to a sleepless night, and settled to watch the television on the wall opposite my bed.
The on-duty nurse routinely checked vitals on the machine I was hooked up to. At one point she said, “Your heartbeat’s a bit elevated. Let me know if it gets any faster.” I assured her that 105 beats per minute was normal for me at rest.
I’d asked the nurses and doctors I’d seen over the past several years if a heartbeat like that was normal, but universally I’d get a blank stare and they’d move on as though I hadn’t spoken. Then I’d forget about it until the next time. And if THEY weren’t worried, why should I be?
I finally switched off the television and light and tried to get some sleep. Lying in the dark, with the hospital quiet all around me, all I could feel and hear was ‘thump-thump-thump’ resonating through my body and thrumming in my ears. I glanced at the machine I was hooked up to, and to my alarm the heartbeat had escalated from 105 beats per minute to 130. I took a deep breath and let it out slowly, as this often helps slow things down.
I looked again. 135. More deep breathing. I decided that looking at the machine was agitating me, so I switched the light back on again and began reading the book I’d brought. A first edition of “Logan’s Run” by William F. Nolan. With a surname like that I wondered if he’d agree to be my guest of honor at the St. Patrick’s Day party later that year. I shelved the thought for future pondering, and without meaning to, glanced at the machine again. 145. From there I watched it move up to 150, then 151, 152, 153. I must be making it do that by getting tense, I guessed, and forced myself not to look. I reached up and pushed the machine aside so that I couldn’t see it.
By this time I felt very light-headed, and a sort of fluttering cascaded round my chest. I pulled the monitor back round. 160. Shit, I realized I had to make a decision. Do I let it play out; let ‘nature take its course’? Or push the call button? 165. I’d better fucking well decide, hadn’t I? 168. Okay. I pushed the button. The nurse came in almost immediately.
“I’m very sorry,” I told her. “But you asked me to let you know if my heartbeat increased.”
We both looked at the monitor. 172.
She reached to switch off my call button light and smiled. “Not a problem, honey. I’ll just be a moment.”
Her ease of manner calmed me significantly. I returned her smile as she left my room. Within minutes, she came back accompanied by a team of people who entered the room with purpose, pulling a machine on wheels with them.
Irish gallows humor kicked in. “Please tell me that’s not the defibrillator!” I laughed, yet tears ran down my face. It *must* be serious, I thought. I felt a sudden stillness descend on me as I understood it was indeed serious. But surprisingly I wasn’t frightened. I just felt really sad that I hadn’t put my affairs in order before the surgery. Anyone having to go through my myriad of belongings and files would have a huge, confusing task ahead of them. Then conversely, the laughter seemed to counteract the escalating heartbeat. As we watched it gradually slowed, finally settling around 150.
“That’s still too high,” was the team’s consensus. But they left, taking the machine with them, and an intern doctor was roused from his sleep and brought in.
Many questions and several blood draws later a portable x-ray machine was hauled in, then a CAT scan was ordered. As the nurse and technician wheeled my bed through the corridors to the imaging department, the technician explained what he was about to do. When he told me he was about to put some ‘medicine’ in me prior to the scan, I said, “Wait. Do you mean iodine contrast?” To his nod, I explained that iodine is the last thing a person with Hashimoto’s should be given. It could have catastrophic results!
“Then we can’t do it,” he replied irritably. “I wish you’d told us that.”
“I DID,” I answered, equally irritated. I’d spent about 45 minutes on the phone prior to admittance answering a host of questions. “However,” I added, feeling the inappropriate Irish guilt for being ill-tempered (even under these circumstances), “the nurse I spoke to on the phone in admitting hadn’t heard of Hashimoto’s, so maybe something got lost in translation.”
Luck was on my side, though. A technician in Nuclear Medicine was in the hospital, even though it was now 3:30 in the morning. The poor thing was there trying to catch up on her backlog of work, but readily agreed to put me through a series of scans. First she had to order the radioactive stuff from Portland, so my bed was pushed up against a wall in the corridor while we waited. I closed my eyes and tried to doze.
Thoughts of my life, pinpointed and put into sharp context by this moment ran through my head. I don’t believe things were ever as clear as they seemed at that moment. I now understood how fleeting life is… how rapidly it can pass, and how very quickly it could end. If I got through this, I knew what changes I had to make in my life. I’d muddled along too long, taking the easy road at times, not speaking up because it was easier to let things slide. Putting up with being treated with less than respect. Feeling guilty about things I had no need to feel guilty about. No more. I needed to make whatever time was left to me matter.
A courier brought the ‘stuff’ within a couple of hours. Soon I was pretzeled between and under the vast scanner. 45 minutes later I was wheeled, not back to my room, but to Intensive Care, where yet more blood was taken for lab work. That would make about 6 draws during the night. The atmosphere in Intensive Care was very different to where I’d been. And worst of all as far as I was concerned, there was no bathroom!
Morning came quickly, and with it more lab work and more blood draws. The inside of my elbows looked like a row of angry red headlights. I don’t know why they didn’t draw it from my IV in my left arm, but I guess they know best.
A heart doctor heralded the start of the shift, and as I was still averaging 120 bpm at rest he prescribed heart meds to bring it down. The scans had shown nothing abnormal, so an ultrasound was ordered. It felt to me that we’d missed something, that things were running out of control. I wondered if we were heading down yet another dead end as far as diagnosis were concerned. As the doctor spoke about a heart murmur he’d detected and if heart disease ran in my family, (it doesn’t) a thought came to me.
“I have Hashimoto’s,” I began.
“I know, I read that here,” he said, and continued his monologue.
I held up a hand to halt him, index finger straight up, à la Margaret Thatcher. “I’ve been on Armor Thyroid meds for hypothyroid. What if,” I said, “my thyroid’s gone hyper, and I’m in fact overdosing the medication?”
“I shouldn’t think so,” he replied. I almost accepted that, so set in my passive ways. But no longer. I scowled, making him add, “But it’s worth testing for.”
He actually was really nice, polite, and eager to help, but I’d realized I could no longer treat doctors like friends. That had gotten me nowhere in the past. I had to keep a professional distance and question everything.
The lab technicians reappeared almost immediately. “Are you sure?” the new me demanded. “I had blood taken half an hour ago.” They checked their clipboard and withdrew. I smiled to myself. Took me long enough, but I was beginning to feel in charge of my well-being for the first time.
I had my cell phone with me, so I texted friends to tell them what had happened. I have special gratitude to Neil Shannon, Lynn deBeauclaire, Jessica Polanco, and Jay Lake, who all came to visit me in IC.
After my visitors had left (they weren’t all there at the same time), the heart doctor returned and announced that I had been 100% right about the thyroid going hyper. It had accelerated into Graves’ Disease, and I no longer had Hashimoto's. My enemy had a new name, and was easier to face because unlike Hashimoto's there are specific symptoms and specific treatments. He explained about my options: radioactive treatment or surgical removal, and that if left untreated, the disease would lead to certain death. Although he was totally deadpan as he spoke, my imagination had him saying, “CERTAIN death!” in an overly dramatic fashion. “OooOOOOoooh!” went my Irish gallows humor in my head, imagining a scene in the 80’s movie “Labyrinth”.
So the murmur he’d heard in my heart was apparently due to the fact that I’d lost a lot of blood during the knee surgery, and there wasn’t enough for my heart to pump properly. I’d already signed a pre-admission permission to give me a transfusion if necessary, so the doctor informed me I was to have one, and then left.
The on-duty nurse in IC arrived shortly after that with a blood bag, which she deftly hooked up to my IV. “You might feel a burning sensation when it goes into your arm,” she said, and with a smile, left me to it.
Now, I’d realized how serious it was the night before. But when I actually saw the Red Cross bag of blood attached to me, "It *must* be fucking serious," I thought. I watched the blood slowly weave its way through the curling lead toward my arm, and felt a sudden panic. What if it’s the wrong type? No one asked me what blood type I was! (Never mind that they’d taken 7 blood draws and it was printed on my ID wrist band!) I hauled myself up onto my elbow and peered at the label on the bag. Reassured it was O Positive, I lay back down. The blood had almost traveled all the way to my arm. Did I want someone else’s blood in my veins? Weren’t there all kinds of taboos and superstitions about that? Reason had obviously left me for a moment and I shook my head at myself. Of course I wanted the blood. I needed it to survive. Then it reached my arm and began to mingle with my own blood. It didn’t sting or burn, but I felt frightened and very much alone at that moment. I could hear visitors chatting and laughing quietly in adjoining rooms in the Ward, and tears welled up in my eyes as I felt sorry for myself, facing this life-changing, terrifying moment alone.
Now, I like to keep my faith private. I do believe in a higher power, but it’s my own business how I like to interpret that. I find organized religion is not for me, however… so during admittance I had rejected the hospital chaplain’s offer to visit me.
Just at the very moment I was most feeling alone, the curtain to my cubicle twitched and a dark-haired young woman appeared. “I’m from the hospital chaplain’s office,” she said. “Would you like a visit?”
“You couldn’t have come at a better time!” I said, half-laughing, blinking back my tears.
She came right over and pulled a chair close to the bed, and took hold of my hand. I felt embarrassed and silly making such a fuss, and I told her so. She laughed and we got to talking about Ireland. It turns out she’d actually been to Northern Ireland (where I’m from) and had been to the very castle that is my most favorite place on Earth: Dunluce. She’s the only American I’ve met that had been there, apart from those I’ve taken there myself.
So, I’m not saying that’s evidence of a higher power, but it certainly was very interesting timing.
A lot of changes happened in me that day. It’s not the first time I faced death… but it’s the first time I took it seriously. I had the radioactive treatment not long after that. Now, after several months that I never want to go through again, I am feeling better than I have in years. I’m still recovering, which I have to remind myself. But I’ve learned to pace myself and to be honest with people when I’m not feeling well. But those times get less and less. I no longer need sleeping pills and feel so much better rested in the mornings. I am regaining my social life and catching up with good friends. I have been traveling, as my Facebook video of parasailing in LA is witness to. And now I’m writing again.
I feel so blessed to have had the support and love of my family and friends. Oddly enough I feel like I belong on Earth much more than I ever did before.
And yes, William Nolan was my guest of honor at the St. Patrick's Day shindig! And my brother, Steve, traveled all the way from Scotland for it, which cheered me immeasurably. That party was a turning point for me in my recovery. Surrounded by friends old and new, laughing and singing. (Even though the beautiful Michele Freeman made me cry with her lovely rendition of An Irish Blessing on the harp!) :-)
I'm gradually learning to reject my passivity when it comes to conflict, so please excuse me if I ever sound a bit grouchy. I'll get better at expressing myself!
So, that’s pretty much it. I’m sorry this blog is so long, but a lot of you asked what had happened and I didn’t feel up to writing it before. :-)
Here’s to a great holiday season this year – and you can bet your boots I’ll be celebrating with a vengeance!