|Posted on February 28, 2015 at 7:55 PM||comments (1)|
The fog wrapped dawn slides across my window. I’m watching from my bed as the sky slowly lightens from blue-black to pearly pinks. I can’t believe I’m awake, it’s only six a.m. and I am in a sour mood caused in a large part by my nervous sleeplessness the night before. I know I need to rest before I go to the hospital, but I’m wired. Wired and tired. I pull myself to a sitting position, drag my flaccid legs across the bed, dangle and drop them to the floor, stand up and pivot semi-gracefully into my Quantum Q6 Edge power chair, waiting next to my bed like a faithful metal horse. This chair is new, paid for by the Great State of Washington, my true patron, and fits me like a glove. When I plop myself into it, the soft foam, molded to fit my crooked back and my uneven sitting position, wraps around my spindly body and holds me in a tender hug, sweetly for a machine. And it is a machine, a fact I forget at my peril. This rig has a top speed of fifteen miles per hour and a range of fifteen miles, and can crush an ankle in three seconds flat if accidentally rammed into a toilet pedestal. Or if you happen to be beetling down the sidewalk at top speed and stop suddenly and it may fling you to the sidewalk and then in an acrobatic miracle of metal, flip over on top of you, pinning you to the sidewalk and breaking your tibia – a bone that is as strong and indestructible as cement. And yes, I speak from experience.
Right now I need the bathroom and something wet and fruity for this Death Valley mouth. Like everything else on my sixty-nine year old body, my mouth goes slack-jawed in my sleep, and I find myself breathing through it. When I wake up, it’s so dry, I can hardly close it. Probably due to one of the sixteen medications I take every day to stay alive.
I remember the first pill I ever had to take regularly. I had been diagnosed as hypertensive in the dentist’s office, of all places, and given a prescription by my general practitioner. Taking one pill a day for the rest of my life was a commitment I just couldn’t get my head around at forty, but we humans can get used to anything. I think it’s a major key to our survival on earth, a major key to mine, anyway. Now I take three pills daily for the same problem, and never miss a beat. I used to watch my grandmother in amazement as she took her pile of pills every day for many of the same inherited problems. Now I am a grandma and have my own rainbow nuggets to swallow at breakfast, lunch and dinner. I tell myself these pills are going to help me live forever and I wash them and a Vicodin down with a scalding hot cup of coffee. Breakfast of champions.
I pull up to the altar in my bedroom and chant a quick Nam Myho Renge Kyo. I’m a Buddhist and have been for most of my adult life. I learned all I needed to know about Christianity early on in grades one through eight of Lutheran parochial school. I think my Christian background actually propelled me into looking for answers that were more practical and better suited to me than what that bully Jehovah and his martyred son, Jesus, had to say about things. And don’t get me started on the poor fourteen year old Virgin Mary, who had to be raped by an angel to even get into the story, and finally left behind to clean up the mess. There is no way around it, Christianity pisses me off.
Don’t get me wrong, I’m not a total heathen. I am impressed by the Ten Commandments as a civilizing guidepost of do’s and don’ts, but why the ridiculous story about Jehovah carving the stone tablets up in the mountain? Obviously, Moses was a high level social engineer and dummied up so he could use the god persona to pad his own tentative rulership. And why must every religion become a polarizing club to subdue all other ideas of who we are and where we come from. The Church grills us to “have faith” – faith in what they say is true. I am of the opinion that Faith is a cop-out, an exercise in accepting for a fact something you can’t understand because it is too unbelievable, like most of the bible. Maybe this is a sore spot for me. Faith and Healing were interchangeable when I was young. If I only had faith, I could have dropped off the body braces and walk unencumbered. But that never happened. No matter how hard I prayed or tried to be good, my body just kept twisting and curling like a well- tended bonsai tree.
I’m sixty-nine now and this body of mine is definitely on its’ last hurrah, but I didn’t have much to work with after polio had its nasty way with me when I was two. I was born in the Ohio River Valley area, one of the main vortexes for the water-borne epidemic of 1948. No one really knows how all those children contracted the disease, lots of theories, not much proof, except for the thousands of crippled and deformed children left behind.
I feel so sorry for my mother when I think of the exact type of horror she went through watching me succumb to the fever and paralysis, and finally, not able to move. I had walked at seven months, but didn’t walk again for a year and a half, which I spent in the Children’s Hospital in Toledo, Ohio. I remember very little of my hospitalizations, but one dreamlike memory is imprinted in my memory.
I am in a darkened room filled with drab olive green and brown metal beds. The beds have side bars that go up and down with loud scraping noises whenever the nurses or doctors attend to me. The bars, or the thought of bars, doesn’t bother me because I am so tired and nothing moves on my body. I don’t even have the strength to cry. This bed is all I know and it feels safe. The sounds of the other children in the room are a backdrop of moans and cries, but not very loud. Mostly it is the sound of the nurses, staunch ships in the gloom, their starched whites rustling through the wards, their soft, sweet smelling hands flitting through the dimness like pale moths.
A group of nurses come close and I see one is pushing a square metal box on wheels. A gleaming white ice-cream cart. But when she opens the top, a cloud of steam rises to the tiled ceiling. An expert jab with the long sliver tongs brings up a hot square of bright red felt and the other nurses carefully spread it across my leg. Another steaming patch is retrieved.
This time it’s yellow, and my foot is covered. Next a green square is put on my hip. The nurses bending over me are talking and encouraging me with sweet words, mother sounds, as they continue to cover me in this fashion. Soon look like a small pile of colored steaming rags. The warm, moist heat encourages my painfully contracted limbs to relax, stretch out and maybe, someday, walk again. The warm wraps feel good and my cramped legs slowly relax as the heat penetrates, turning my rigid muscles to warm pudding. I slip from consciousness into blessed sleep.
Sleeping is still one of my favorite pastimes. I’m an active dreamer and sometimes my dream life is much more exciting than what I wake up to. Especially on mornings like this. I wish to hell I was still asleep, but I’m awake and it’s time to roll on down to the hospital to see my girl.
It’s bitterly cold out, not our usual seaside marina weather. The fog has frozen on the spikes of green grass glittering blindingly as the sun breaks through. I wince at the glare, like most north westerners I have a love hate relationship with the sun. I love to see it come out, but soon become annoyed at it’s angle in the sky, always a little low, always shining directly into my eyes. Sunglasses would help but those plastic horrors that fit over your glasses never fit right, they are too heavy and pretty soon the bridge of my nose starts to hurt…..making me irritable. I could wear a ball cap with a protective brim but I’m way too vain to go there. Nothing worse than an old disabled dyke wheeling around in her ball cap. I am not that butch.
Twelve blocks later, I’m rolling into the main entrance of Providence Hospital. I’m getting to know this place pretty well. I’ve been coming here almost every day for three weeks now. Hospitals are made for wheelchairs and gurneys, so it’s really a pleasure tooling down those smooth as glass polished floors. It’s so easy and pleasant that I have to watch out for the pedestrians. They see me coming at them and they get nervous and start darting around trying to get out of my way. Usually they end up putting themselves directly in my path. I try to make eye contact as I approach, but nine out of ten people just continue looking over my head or at their cell phones. The cell phone people are the ones I really have to watch for. They are so busy reading or texting about the latest drama in their lives, I could pick them off at 15mph, easily. But I don’t. I am the picture of civility, smiling and nodding at them as I zoom past.
Hospitals don’t bother me like they do a lot of people. Maybe because I spent so much time in them as a kid. It seemed like every summer I needed some kind of orthopedic sugery. As I grew, tendons needed to be lengthened, spines needed to be straightened, toes needed to be fused. There was always something. I didn’t fight these hospitalizations too hard because I was always promised that I could drop off one of my braces with every surgery. And god knows, I hated those braces.
When I started walking again at around age four, I had the full package of Minnesota body braces; back brace supported with metal stays and leg braces that came to the top of both thighs. In those days the braces were made of metal and leather. Plastic had not yet been perfected for prosthetics. There was a little sliding lock device at both knees so that when I sat down, I could slide it up and bend my knees so I wouldn’t look like an idiot sitting there with my legs all stiff and sticking straight out in front of me. I remember that I started using twine to keep this lock open so I could bend my knees when I walked, so that summer, in I went for surgery. When I came home in a cast with something looking like a huge nail sticking out of my toe, there was a beautiful blue girl’s bicycle waiting for me. I couldn’t ride it till I got the cast off at the end of summer, but that didn’t stop me from posing for the camera standing tall beside it holding my cat and wearing my most favorite dress that stuck out like an umbrella from the five starched petticoats I wore under it. I felt like a princess that day. When I finally got the cast off that fall, my new brace only came to my knee and my left leg was brace free for the first time in eight years.
At the time, before the curving of my spine began in earnest, I was tall for my age and it was a big bike. I had to start with training wheels, but it didn’t take long for them to come off and I was sailing along at top speed with my playing card clothes pinned to the wheel guard so it snapped every time a spoke hit it, sounding like a little motor. I loved that sound and how it got louder as I went faster. I got my first taste for speed on that bike. I wasn’t allowed to cross the street, but I could go around the block as many times as I wanted.
|Posted on February 22, 2015 at 2:55 PM||comments (0)|
What a strange and uncomfortable time.
Christmas frenzy going full blast all around me and I’m vomiting blood. It started out just as a little stomach upset from drinking wine at our potluck on Saturday, December 6, 2014. Ever since my bariatric surgery last spring, I sometimes have trouble digesting when I over indulge and eat too large a portion of food. Now I realize I can’t drink alcohol. The next day, I wasn’t able to keep anything down, not even water, and I had a major stomach ache. By Wednesday, I had begun projectile vomiting tiny blood clots. The ambulance was called and I went to Providence Hospital where I stayed for 3 days as they did tests and provided me with saline and pain medications. On the 3rd day, I felt better and was able to keep food down so they sent me home. My diagnosis, “gastritis with coffee ground emesis”.
A week later, December 21, early Sunday morning, Janie started vomiting blood, a lot of it, and it was red not brown. We called an ambulance who then took her to Providence. They did an endoscopy later that day, found 2 bleeding ulcers in her stomach and cauterized them. We believed that would take care of the problem.
However, she started vomiting blood again the next day, so they did another endoscopy, but there were so many blood clots they couldn’t see where it was coming from. They set up another endoscopy for the next day, hoping the debris would clean up by then. She felt pretty good before going into the procedure room, except for a headache and tremendous thirst. However after about 10 min. she bled out on the table, and stopped breathing. Basically, she died for 20 minutes.
I heard them announce “Code Blue in Endoscopy” over the loud speaker and I knew it was her. My blood went cold and my stomach felt like it dropped right out of my body. About 15 people rushed into the room with machines and worried faces. I was crying and demanding information from the nurse at the front desk, so he called in the parish priest to talk me down. The priest helped me get nearer to the room she was in. I was in the hallway right outside the door. I could have moved to a place where I could look in at her, but I was frozen to the spot, I didn’t want to see her dead. I knew I would never forget it.
She was violently resuscitated, with a nurse actually jumping on her chest and pounding. Later, the nurse told us that she could feel how fragile and almost flat Janie’s chest area was, she said she could feel the heart under the cracking bones. After 20 minutes of pounding and shocking, they brought her back, breaking several ribs in the process. They immediately took her to the O.R. and opened her abdomen for an exploratory procedure. Finding nothing, they sewed her back up and sent her to her room in ICU.
At this point, the doctors still did not know where the blood was coming from, but they suspected that one of the ulcers may be tapping into her aorta. Because of her unique stomach placement (due to her esophagectomy 10 years ago) to find out for sure, they would need to get under her heart for a look see. She had 4 doctors putting their heads together on this, and none of them wanted to do this type of surgery on her because of her weakened condition.
On the seventh day of her hospital stay, Janie started vomiting blood, again. She had been eating well and feeling good, and was even planning to come home. A scan was performed and the doctors decided they needed to look at the area behind her heart. An incredibly young cardiac surgeon, Dr. Costas, performed a thoracotomy, breaking through her ribs to get to the heart. Sure enough, the ulcer had eaten through her aorta. Once again she bled out and her vitals went way down, once again they brought her back. Dr. Costas, sewed it shut, tied it all off, artistically padded it with some fat, and closed her up. She was intubated and put in a medically induced coma.
By this time, Janie’s older sister, Jo, had arrived from Denver, and camped out in the hospital with her. I took the evenings, she was there in the mornings. Janie’s friend, Phyllis was usually there in the afternoons. Although Janie was no longer in a coma she had been given a “saddle-block”, paralyzing the upper half of her body to relieve the pain of the surgeries and the broken ribs, so she could breathe. However, this resulted in her not being able to move anything from the waist up. We tried to make her more comfortable, but at times it was impossible. She was not allowed food or water, and the lack of water is something she remembers with a lot of post- traumatic stress. She developed pneumonia and they put a tube in her chest to drain off the liquid and started her on a course of antibiotics. She also developed a urinary tract infection from her catheter and this required another type of antibiotic.
One of her blood tests came back showing elevated h-pylori bacteria. H-pylori is an opportunistic bacteria most of us have in our stomach and/or gut. It’s highly communicable, but usually kept in check by our own bodies defenses. However, too many antibiotics or a weak immune system can cause the h-pylori to flourish resulting in acid reflux, indigestion, ulcers, coffee emesis, and even cancer. I think this is the answer to the question “WTF?” Janie had been on antibiotics for a tooth. I wasn’t on antibiotics, nor did a high level of h-pylori show up in my tests, but I think I had it, too, but my body beat it back. Janie wasn’t so lucky. A third type of anti-biotic was added to her intravenous cocktail.
She was hospitalized for 2 more weeks in recovery, with only one day out of ICU. They wanted to send her to rehab, but she was ready to be at home, so I told her I would help her recover for a few weeks since her in-home aide, Gloria, was in Alaska, visiting her mother.
That was six weeks ago. I feel great and am totally recovered. Janie’s recovery has been very slow, but sure. She can now walk several blocks if she rests in the middle, and her arms and upper body are getting stronger every day. Sadly, her near-death experience did not pull her into a light and love-filled plane of existence. Quite the opposite. She remembers a dark tunnel, with no light, blacker than anything she has ever known. And she was angry, very angry with the doctor performing the endoscopy. And then, nothing. She came away from this experience shaken and feeling not quite fully plugged in to her life. We’ve read that this is common after a near death, but that doesn’t make it any easier. #NDE,#wtf,neardeathexperience,#wheelchairlife