And Then I Woke Up
(By the way, check out my new review of Monstrous Regiment, by Terry Pratchett, on Goodreads! It’s the first in a series of Snarky Reviews of Good, Bad, and Great Books.)
. . . And then I woke up. After a long sleep I didn’t even remember starting. Flat on my back, with strange men* wiping my bottom for me. Because I couldn’t do it.
I didn’t know I had been asleep. Apparently I almost died from a really weird and rare disease called Wegener’s Granulomatosis with Polyangiitis. It’s a kind of vasculitis, which means that your immune system attacks your blood vessels. Mine apparently came on like a bad flu at first, but the thing is that I don’t remember any of it, nothing about getting sick and going to an acute care center or being shipped from there by ambulance straight to the hospital. Nothing about being put on the ventilator the next day. Nothing about the first month of hospitalization afterward.
Protective amnesia, I guess. I was on the ventilator for over three weeks, sedated and paralyzed so I wouldn’t fight the machine. And during that time I lost my ability to walk, and at first even to lift a finger. I was lucky, though. I didn’t die, and at UCSF Medical Center I had—literally—some of the best doctors in the world. Doctors for my lungs, which were severely damaged by the disease, for my kidneys, also damaged, for my heart and liver and gallbladder, and of course rheumatology doctors who treated the strange disease that was ravaging me itself.
You have to keep your spirits up in a situation like this. It does reset your priorities when you learn that you’ve been critically ill even if you don’t remember a damn thing about it. Suddenly your independence is gone and you’ve moved from being a clear-thinking, perfectly functional person, able to walk, run, drive, shop, play with your dog and put in a day’s work at the computer, to a lump that lies in bed and stares at the ceiling, or, worse, at daytime TV. That’s bad, but it makes you think about what could be worse, like being dead or permanently disabled instead of just wonky from being so long on the ventilator.
Now every hour has its challenges, whether it’s trying to stand up or to swallow a dozen chalky pills one after another or to getting my shoes and socks on alone. Fortunately, in addition to some of the best doctors in the world I got into one of the best acute rehabilitation centers in the country—and it’s only twenty minutes from my house. I want very much to get home, but I still have quite a way to go before that’s possible. At least I haven’t lost my keyboard skills. My computer is a great comfort to me.
* * * * *
I wrote all the above while I was in the hospital. I spent two months in hospital, first at UCSF Medical Center and then at John Muir Medical Center. I’m back at home now, but everything in my life has changed. I still practice walking, but most of the time I’m in a wheelchair. The strength in my upper body has come back, but my legs are very wobbly and I had a bad fall a few weeks ago that sent me to the emergency room (fortunately no broken bones, but a fat lip and some really stunning bruises on my face and one leg). I am on a chemotherapy drug to control the Wegener’s, which is a really weird disease, as I’ve mentioned. No one knows much about Wegener’s, like whether it’s caused by a virus or some hereditary trait. I was lucky that a very savvy doctor diagnosed it early enough to save my life.
The good thing is that I’ve learned a lot from almost dying and from becoming disabled, even if it’s temporarily. Number one, I’ve learned how good most people are. First, my doctors and nurses. They’ve been incredible. Not only have they saved my life, but the vast majority of them have had fantastic bedside manners, complete with humor and humility and the kind of grace that goes beyond gifted hands. I have to say thank you to Dr. Umapathi, Dr. Chaganti, Dr. Shen, Dr. Ko, Dr. Auerbach, Dr. Tyler, Dr. Padgett, Dr. Kim, and Dr. Hilliard, among dozens of others, for everything you did for me. I would also like to thank all the nurses personally, but there were so many of them, and unlike the doctors they didn’t leave me with business cards. I owe them a debt I can never repay.
Then my therapists. Physical, occupational, recreational . . . they’ve been unbelievable, too. Therapists taught me how to walk, climb stairs (slowly, with a cane and hanging on to the railing), dress myself, make a cup of tea, play games again. These were all women, and they work hard to save people like me who, because of disease or an accident, suddenly have lost their independence. Thank you, Heidi, Kristine, Jamie, Kristin, Stephanie, Ellerie and all the others. I’d call each of you “Ms. Whatever” but we’ve always been on a first name basis—that’s how warm and friendly you are. Also, thank you, Angela, for coordinating my medical care while I was in rehab.
And let me apologize here, because I have forgotten dozens of names I should remember. I’m so sorry because my memory for the entire last year is a bit wonky and many people’s names are right on the tip of my tongue but I can’t quite get them out. I do remember your deeds, though, or I’ve been told of them if they occurred during that month I will probably never get back. If I have missed thanking you personally, forgive me.
I also want to thank the ambulance crews who transferred me from hospital to hospital for tests or procedures. These paramedics are fabulous folks and they always treated me with respect and great kindness. What a selfless bunch.
Speaking of selfless . . . volunteers. If you volunteer at your local hospital, I want to tell you right now that you make a huge difference in the lives of the patients. Whether it’s coming by with a comfy pillow, knitting throw rugs to keep our feet warm (I have one that is dusty rose, olive and cream and it is gorgeous), writing the next day’s schedule on the whiteboard, going from room to room to play music (a cellist and guitarist brightened each week for me), bringing a therapy dog or cat to visit (oh, my, how I looked forward to animal time), offering spiritual support, or just stopping in to ask how the patient is doing, you are making an enormous contribution. I can’t thank volunteers enough.
And then there are just ordinary people. Wherever I go, they are eager to open doors for my wheelchair, to make room on elevators, to offer a helping hand. I would say that eighty percent of the people who see me in a dilemma come forward to help without a second thought. I am astounded by the kindness of strangers.
Which leads me to the kindness of friends and family. They’ve done everything from keeping up a constant vigil of prayers and positive thoughts since I was diagnosed to offering me a “spare” kidney if I should need it. I have never heard my dad choke up on tears until the day I got off the ventilator and was able to talk to him, however weakly and hoarsely. With visits, cards, gifts, flowers, and phone calls my friends and relatives have shown their love and concern and contributed tremendously to my wellbeing.
And then there’s Julie, my best friend and housemate. To say that she has saved my life is like saying Tony Stark’s Iron Man suit is mildly helpful to him. She has taken over a thousand things that I used to be able to do, but that now are either a severe challenge or simply impossible. I’ve sworn that someday I’ll make it up to her, but I have no idea how. She’s an angel, a superwoman, and that’s that. Thank you, Julie. You have truly taught me the meaning of gratitude.
Another thing I’ve learned from being so sick is patience. When you’re stuck in a hospital bed or a wheelchair there’s a lot of waiting, whether it’s for a nursing assistant to help you to the bathroom or for your blood pressure to be taken for the three-hundredth time or for a ramp for bikes and persons who are disabled to show up so you can get into a building. You pretty much have to learn to be patient or you’ll drive yourself crazy.
And I’ve learned—a bit—not to fret too much over what’s going to happen in the future. No point in thinking about that painful blood draw that’s coming up in an hour. It will just add an hour of anticipatory misery to the actual event. As much as possible, go by the motto, “Sufficient unto the moment is the evil thereof.” It’s actually a tremendously peaceful way to live your life.
I also learned about modesty. If you’re really sick, it’s about as useful as a trap door on a lifeboat. As I said at the very beginning of this post, while I was in the hospital I had both male and female nurses and I couldn’t lift a finger to help myself in toileting matters. At first I had a Foley catheter so I didn’t really have to worry about using a bedpan, but the Time of the Bedpan came soon enough, and there were always sponge-baths and wound checks to worry about.
I learned to just stop worrying. My male nurses were sweet, brilliant, dedicated and fully focused on their job. None of them were interested in ogling me. So I let go of what was initially a crippling hindrance (brought on, I believe, by a misinterpretation of some passages in Genesis) and now, in medical situations, I am shame-free. That doesn’t mean I’m not glad that now I can walk (using walker or cane) to a bathroom and do my own thing, but this is an issue of independence and not a fear of using bedpans.
A less pleasant lesson I’ve learned is about pain. It exists, and you have to deal with it. I’m in pain every day, waiting to have surgery to get my gallbladder out. (One of the things they found while looking over every part of me at UCSF was that I have gallstones.) Every day I have pain pretty much round the clock, but it has to be endured until next year, when I’ll be fit to have the procedure. I’ve learned how to breathe through pain: in through the nose (“As if you’re smelling flowers,” said Kristine, my fabulous physical therapist); hold, two, three, then out through the mouth (“As if you’re blowing out candles.”) It works, most of the time. Sometimes there is nothing to do but grit your teeth and pray that you can outlast the hurt.
Yesterday was a really painful day. I was grateful that my friend Christina had recommended some really funny videos on YouTube. They kept me laughing and took my mind off the feeling that someone was stabbing me in the side. I’ve learned that humor really helps in the battle against illness or even just feeling grumpy. Laughter is such a gift.
Then there is the very sad, but vitally important, lesson that the world is not built for individuals with disabilities. Even hospitals, especially older ones, are woefully unsuited for my wheelchair. The tiny cubicles of examining rooms are too small for it; the bathroom doors are impossible to open from a seated position; there isn’t even a proper place for the chair to go in most of the crowded waiting rooms. I definitely have to address this in a book with a wheelchair-bound protagonist. For now, just let me say that a lot of work needs to be done to make this world accessible to anyone who isn’t fully “able-bodied.”
I’m sure my readers have questions for me, and I have the feeling that one of them is: What was it like when I was in a medically-induced coma for over three weeks? Did I see God? Did I get to talk with my late mom? Have an out-of-body experience?
I wish. I did have some fascinating dreams, though. I actually got an idea for a new book that incorporates a lot of the dream concepts, so I won’t tell you about them here: they’re top secret. The really funny thing is that I continued to have vivid dreams for the first week or so after I was off the ventilator and some of them seemed so real that I couldn’t be convinced they were fantasy. For instance, I was certain that one night a group of junior nurses had somehow taken the entire ICU on a voyage down a river, winding up in a rather idyllic grove where we had a tea party until the police arrived to make everyone go back home. I was so certain that this had actually happened that I asked a nurse the next morning if there had been any arrests, and I clung to my conviction despite its obvious illogic. It just seemed that real.
I was lucky not to have suffered from ICU psychosis, which led my mother to believe that she was in a concentration camp when she was in her final hospitalization. My dreams were sometimes a bit scary—especially one about the distant future, which I will definitely feature in a book—but for the most part they were fascinating and adventurous. Very story-oriented. As I gradually recovered and learned to do things like tell time again and use a call button to signal a nurse (I was too weak to push the button at first) the dreams became less vivid and I stopped believing that they were real.
So that’s what’s been going on. As I’ve said, being sick has taught me some exceedingly valuable lessons, and I am grateful now for every day that I am given. I feel so blessed to be a writer, and to have regained all my fine motor skills so that I can type—if not quite as fast as before, then close—and that I am now back to writing the books that were interrupted when the Wegener’s kicked in. This means that, yes, I am working on The War of Roses for Kindle Worlds and on The Last Lullaby. I’m even tinkering with Strange Fate, so basically all bets are off. (No, I don’t know exactly what that means, either; I just said it because it sounded good in my head.)
As always, thank you for reading this far and thanks in advance for the good wishes I know my readers will be sending me. You people are the best, and I love you!
Oh, and one last lesson I learned from being sick: don’t ever smoke! Thank God I’ve always been a nonsmoker because I would undoubtedly have died if I’d ever been addicted to cigarettes. It’s the first question everyone in the medical profession asks you when they’re examining you and trying to figure out your state of health, and I can’t emphasize too much how important it is. DON’T DO IT! It will kill you even if you avoid getting lung cancer.
*Nurses, actually. Fortunately. If they had just been random strange men I’d probably be in jail now rather than writing this.