A Year in Body Version 63.0

Safely under the watch of Guard Lamb.

Time. Scientifically, it doesn’t change. But it seems so variable, as in how can my sons be married, thriving adults, when there were interminable minutes when they were children? A year ago yesterday I became paralyzed several hours after surgery to fuse my cervical spine. I underwent a second surgery to drain a large hematoma that was pressing on my spinal cord. The anticipated three-to-five day hospital stay stretched to twenty-three days. Neither those days nor the year since passed comically fast or quicksand slowly. They weren't gone in a flash or interminably everlasting. It was a bumpy lumpy trail whose signposts I didn’t even recognize, let alone know how to interpret. 

I'd thought I’d post my reflections on a year truly like no other in my life exactly on the one-year anniversary of my being paralyzed, but my writing wasn't ready. I wasn't sure it would ever be ready. This morning though, I realized that while the year-end wasn't a goal, passing it marked something. 

Contemplating that, and shedding a few tears, I hugged Guard Lamb, who's been through it all with me, including letting me squeeze his paws and head during rehab to exercise my hands. It's a year I'm happy to see go, but because of what it contained, it has colored every step forward. 

A Brief History

In the fall of 2012, my new internist referred me to a neurologist about the occasional complete numbing of my arms and my restless leg syndrome. Fortunately, I couldn’t get in to see the neurologist until February 2013; otherwise I might have missed out on our phenomenal trip to Peru and Chile. The neurologist ordered an MRI and physical therapy. Three weeks later, when he read the MRI, he said stop the PT and have surgery on your cervical spine immediately. I was pain free,  so it was difficult to wrap my psyche around the idea that I had a severely deteriorated cervical spine that put me at risk of paralysis at worst and at best the likely irreversible loss of muscle strength and balance within a few years. I consulted with my internist, another neurologist, and a neurosurgeon, Christopher Ames, at the University of California, San Francisco.

Dr. Ames signing my neck brace in the ICU.

On June 25, 2013, Dr. Ames performed surgery to correct severe cervical spinal stenosis (a narrowing of the spinal canal), instability of my cervical vertebrae, and damage to my spinal cord (perhaps caused by being rear-ended by a big rig in 2001). The procedure included a laminectomy to enlarge the spinal canal and thereby decompress my spinal cord, meaning he shaved off the osteophytes on my vertebrae that were due to arthritis, i.e., age. Then he fused my spine from the third cervical vertebra, C-3, to the first thoracic vertebra, T-1, seven vertebrae in all. He installed a rod on each side of my spinal column and screwed them into place—yes, with a drill. Then he packed the ground-off bone combined with other material on top of the rods. This would grow solid and fuse my spine. The rods can be removed, but normally are not. From surgery I went to recovery, then the floor, sporting my hard Miami J neck brace.

About 4:00 AM the next morning, my nurse, who’d seemed rather put out by my presence the previous evening, had me sit up, which made me nauseous. She commented that vomiting in my condition would not be good, left the room, returned (with a basin for me to vomit in? fortunately, I didn't need one), helped me lie down, and left again. I wanted to push the call button to bring her back, but discovered that I couldn’t move my arms and legs. What to do? Well, a voice inside me emerged and said just lying there was not a choice, so I started yelling, “Help! Help me!” I harbored a faint hope that my roommate, who had been profanely vociferous the previous evening, might push her call button, but there was no stirring beyond the curtain that separated our beds. I don’t think my voice was very loud, due to the previous day’s intubation for surgery. I think I yelled for five or ten minutes—anesthesia and pain medications probably altered my sense of time—long enough to worry that my lungs were becoming paralyzed as well. I paused. I listened. I yelled some more, “Help! Help me!” Finally a nurse looked in and asked what I needed. I told her I was paralyzed. “Push your call button,” she responded.

Summer vacation is over! My daughter-in-law
Jessie with my loot & me in the wheelchair.

While Dr. Cage, a fourth-year resident with gentle, cooling hands I’d met the previous evening, and numerous other medical personnel asked me questions and conferred, I continued to try to cheer up my grumpy nurse—maybe she was just having a bad shift. But when she complained that she wouldn't get any overtime pay for the extra minutes my paralysis was causing her to work, I accepted her at face value. I was taken, I think, to the ICU, where a bunch of stuff was done. I had several breathing attacks, which I’d never had before and which prompted a breathing treatment. I kept asking for my son Stephen and Doug, who were outside the room but not allowed in. The operating room called to ask where I was.

Doug would later tell me that it was a very worried Dr. Ames who reopened me, evacuated a large hematoma, ground off more bone to give my spinal cord even more room, and installed two drainage tubes, rather than the one installed in the first surgery. “I am the second happiest person in this hospital today,” Dr. Ames said as he entered my room in ICU that afternoon, for all of my limbs were working again. He was also happy that one of his students, who had assisted in my first surgery, when he saw my name on the board again, requested to assist in my second surgery. This caring about the patient, not just the procedure, would typify the staff of both UCSF and St. Mary’s. That evening, I again loss use of my left arm and leg, but as the pressure on my spinal cord subsided, use of them returned, though greatly reduced. 

Home!

There would be a further complication. While reading early one morning, ten days into rehab at St. Mary’s, I lifted my right arm to scratch my head, and my hand crashed into my forehead. “Hm,” I thought, “that’s not right.” We returned to UCSF two days later, after a bit of miscommunication, where another fourth-year resident, Dr. Zygourakis, was waiting for us and took me herself to radiology for the procedure to drain fluid from my spinal column. It was 4:00 Friday afternoon: she had called ahead to alert radiology that I was coming. There I was again treated like a fine but tough vessel. The wonderful Dr. Z. would oversee my care for the final days of my hospitalization.

Twenty-two days after what was to be a relatively routine surgery and three-to-five day hospital stay, Doug and I returned home. I took with me a superbug urinary tract infection that required over four months to eradicate. I wore my Miami J neck brace day and night. I used a walker. As I became more active, I developed spasticity on my left side, a common result of spinal cord injury.

One year later, the pain in my neck and upper back comes and goes. The C spine is built to bend and twist. The T spine is intended to stabilize and is attached to the ribs. Since my C spine is now fused to my T spine, the physiology of my entire spine is changed, with less overall flexibility and a sort of tugging and pulling if I ask too much movement of it. I long ago returned the borrowed walker and have walked as far as the 3.4 miles around Hume Lake at 5,200 feet. I am able to do increasingly longer and more difficult workouts at the gym: this week I even graduated from one- to two-pound-weights. I drive short distances in the Honda CRV we bought to accommodate my limitations and which I love, even if it does get rotten mileage. I am coming to terms with the fact that the limitations created by a fused spine are permanent and that the spasticity will require constant vigilance to keep my muscles supple and stretched. I am constantly learning what causes pain, and how to accommodate the activities to me rather than me to the activities.

Prayer shawl Aunt Gret made for me.

So that’s what happened, and that’s where I am.

Grace

But this is what really happened. When I lay paralyzed in the hospital bed, I discovered I possess a positive spirit, I who tend to depression and am prone to saying my philosophy of life is you live, you do something, you die. I discovered that deep down I want to live this life for as long as it is provided to me; to keep doing all the things I love to do, even if in modified fashion, and discover new interests; to be here to spend time with my family and friends until, as my dad once said, quoting Hunter S. Thompson, I “skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming ‘Wow! What a ride!’”

View from my "presidential suite" at St. Mary's

I would just as soon that little grain of positive thinking had revealed itself by some method other than paralysis, but I wouldn’t give it up for anything. And here is what it is: I am blessed. My depression didn’t magically disappear, and I still take my meds religiously. But in my life journey, I have experienced so much grace that helps make this trouble bearable, makes me joke about my limitations, and makes me aware that my suffering is very small compared to that of so many. 

To wit:

1. Due to my neck problems, I didn’t fly to Florida that April to visit my Aunt Gret during her annual escape from Ohio winter. She makes prayer shawls with her church group, and she sent me one before my surgery. All of my nurses knew to keep it over or beside me constantly.

Walking with my physical therapist, Gaylord,
one of so many people who have helped me.

2. I’m not recommending you rush out and make a reservation, but if you have to spend four days in an ICU, it’s good to have a phenomenal medical staff like that at UCSF. Of course the morphine pump was pretty cool. Talk about Pavlov’s dogs: I’d never been so thrilled to see a little green light in my life. But boy did Doug get his hands slapped when he pushed it for me once. The shifts were eight hours, so a lot of wonderful nurses cared for me. There was one chatty nurse with a loud raspy voice, but she was kind and let me call Doug so he could tell me I had to get another MRI. My amazing RN Steve literally made me stand up after the two days of bed rest ordered by Dr. Ames. I was fearful that if I sat up, then lay down again, I’d become paralyzed again. Steve wasn’t much taller than I and I probably outweighed him. He braced himself, put his arms under my armpits, leaned back about seventy-five degrees, hauled me to my feet then into a chair—and let me take all the kudos. One night, Michael worried about me getting ICU delirium and asked if he could wake me to check my vitals less often. That was a no go, but he showed me videos of his little girl’s dance recital, in which she was the creative cast member who was understandably utterly bored by tapping her toe three times and turning around ad infinitum. Bintu arrived late one night because Prop 8 had been overturned and San Francisco was celebrating. She relieved Steve, who headed to the courthouse to watch the marriages. It was a little silver lining to be in San Francisco amidst the excitement.

My brother, Cap, and sister-in-law, Adel

3. If you have to be hospitalized, make sure you have a great view and amazing food. I kid you not, every meal at UCSF and St. Mary’s was outstanding. It wasn’t the drugs—even Doug said the meals they brought him were great. The chef at St. Mary’s allowed as to how they and UCSF compete with one another. My first view from UCSF, when I lumbered down the hall and turned right, supported under my arms by a heavy-duty walker, was the Golden Gate Bridge. I cried. Maybe they called ahead to St. Mary’s and that’s why St. Mary’s put me in the corner presidential suite looking out over Golden Gate Park and the Golden Gate Bridge. We could really party in that room!

Emily & Mara can brighten any day!

4. Rehab at St. Mary’s was intensive, exhausting, challenging, and carried about by a team whose sole goal was to help me get back into daily living as quickly and fully as possible. Every tiny and big achievement was cheered, and I got to play games! The nursing staff also encouraged my independence, but were always there when I needed help. They were professional, caring, kind, and made me laugh. Sasha and Sima, who were with me the most, adopted me as theirs. We had a good chuckle the night Andrew and Emily brought me dinner. When Sasha saw the plastic-wrapped plate of fruit we’d put on the floor to make more room on the table, she told us in no uncertain terms that no food was to be on the floor. It was her domain, and we immediately picked it up.

5. My brother, Cap, and sister-in-law, Adel, came to visit more than once. On one occasion, I was too tired to lift my arms and asked Cap to help me eat. Being five years older than I and the oldest of we three, he probably helped feed me when I was a baby, but I don’t remember that of course. I don’t recall what I ate that evening, but I remember my brother’s eyes and smile. It was one of the sweetest experiences I’ve ever had.

My sister & me: two sisters hangin' out.

6. My friend Nikki died ten years ago of ALS. Early on in her illness, she was irate with me for not telling her as soon as I arrived about some trouble I was having. “Mar,” she lectured, “when I was first sick, my aunt told me not to expect people to know what I need, to start telling them what I need. How dare you hide your problems from me!” This week, I actually asked my neighbor Keith to install a new air conditioning filter for me, as Doug is not home.

7. When I was first home from the hospital, we hired Emily to take care of me several hours a day. She and her husband are friends of Doug’s son, Andrew, and she and I had grown close during her pregnancy. Emily is kind, smart, caring, interesting, and wise. She saw cheerfully to my every whim, anticipated my needs, created beautiful meals for me, and brought six-month-old Mara with her. She is like a daughter but also a dear friend. We had lunch together and went fabric shopping on my one-year anniversary. She’s just begun to quilt, and I’m so excited to share one of my passions with her.

Emily & Andrew

8. My sister, Becca, came and stayed with me for a week last August so that Doug could fly to Missouri to be at his son’s graduation from Marine military police training. (He's now in HMX-1, the presidential helicopter squadron.) Becca hadn’t visited in eleven years, yet she left her home and her husband, David, in South Lake Tahoe, where summers are perfect, and came to the San Joaquin Valley in the hottest month of the year. What a week we had, just two sisters hanging out, with her playing the role I love her to play: big sister par excellence, caring for me, loving me, taking me to doctor appointments, helping me learn to knit again. I managed to fix dinner for us one night, sitting on my walker at the kitchen counter chopping salad fixings. She let me do it, and she was so grateful.

9. My children’s “bonus” mother, their dad’s wife, Andrea, asks me pointed questions. I’d always thought myself an open book, but it turns out that, like my parents, I’m pretty stoic. It’s not a bad thing, but there is a time to allow others to help me, to reveal my fears, to cry in pain and frustration and longing for what was, just like my dad cried in his seventies when one of his best friends died. Andrea breaks through my hard shell. She also gave me a personal mantra: “I bless and thank my spine, the support of my whole being. It is strong, supple, and resistant. It is healing.”

Jessie & Stephen

10. My sons and daughters-in-law have loved and sustained me even more through this past year. Andrew and Stephen's medical expertise helps me understand my condition. Jessie had a spinal fusion about ten years ago to correct severe scoliosis and says I am her twin. She knows what support to give and how to make me reflect honestly. I hope Emily, a child life specialist, pioneers a similar program for adults, to provide them as she does children and their families activities to educate them about diagnoses and procedures and to normalize conditions. While I was in the ICU, she brought me a stuffed animal that opens into a pillow, the infamous Guard Lamb. Stephen visited and we had long, wonderful conversations almost every night I was in the hospital. He also gave me more gray hairs by insisting on sitting in my wheelchair and balancing on the back wheels. He and Jessie even spent his birthday with me, a rare event since his teens. The entire time I was hospitalized, Doug stayed with Stephen and Jessie in their nearby flat. Most times when we go to my follow-up appointments, we stay with them. Like his brother, Andrew calls often for long conversations.

Javier, Katie, & Andrew--my bonus children.

11. Doug’s children, my "bonus" children, gave me an ipad mini for my hospital stay. Little did we know how key it would be for me since I literally could not hold a book after I lost both my triceps. They flew home for the Fourth of July weekend last summer, Katie and Javier from Seattle and Andrew from Missouri. When it turned out I was still hospitalized, they didn't hesitate, and with their mother's support and her car, took one entire day from their short visit to drive the eight hours roundtrip to San Francisco to visit Doug and me. They have embraced me as part of their family. This weekend I will go out with their mom, Cindy, a nurse, whom I count as a friend and who also shares her medical expertise and caring with me.

12. We have amazing neighbors. Calls to Richard and our mail lady, Alyssa, who is also a neighbor, and she delivered our mail to him—as simple as that. Keith, JayeTee, and their slightly aging dog Gypsy keep a constant eye on our home, call or email if something seems amiss, start our cars, and fix our sprinklers. Chris works nights and always has an eye out on our place during the day. We give our neighbors the gate code so they can pick the tomatoes and zucchini if we are not home—thank goodness last summer was a bumper crop.

Doug on the ferry en route
to North Carolina's Outer Banks.

13. Our friends and family near and far have called, visited, written, brought meals, asked questions, and looked after Doug's and my well-being. They have gone out of their way to include me in gatherings, ensuring my comfort and safety along the way. Mark, who had a similar surgery thirty years ago, has gently shared with me his experiences on several occasions. Now he and I hold our heads the same way, but I need a footstool to look him in the eye, since I can’t look up anymore. Doug’s breakfast group, my book group, and so many others have helped sustain us. Just yesterday Doug had some more information for me from a friend he was visiting in Canada who is a PT.

14. Doug and I (and Guard Lamb) spent seven amazing weeks on the road this spring, meandering to new and old places, visiting Andrew at Quantico where he is stationed, and visiting numerous family and friends in the East. We traveled in a twenty-foot Pleasure Way class B motor home we bought from a friend, a “Ford van on steroids,” Doug says, dubbed the MRV (“Merv”—Marilyn’s RV). We still have Doug’s beloved VW Vanagon, which I also love to travel in, but it is too rough for me for now. I flew home for my Andrew’s graduation from residency. As I write this, Doug is at the final stop of his trip, a visit in Seattle with Katie and Javier. He even allows as to how he likes the comforts of the MRV. But we won’t give up the VW.

Me en route to the Outer Banks

15. I have a superb physical therapist. Rocky is knowledgeable, flexible, kind, and funny. He calls upon the expertise of others when he doesn’t know or isn’t sure. His assistant, Casey, guides, cajoles, and praises. I never have a bad day at PT. If I come in scared or sad or frustrated or down, Rocky and Casey immediately embark on rebuilding my confidence and making me laugh, and I leave feeling accomplished, upbeat, and loved.

16. When I was a little girl, my sister and I had friends who took ballet lessons. When we visited, we’d put on their ballet slippers and music and slide and twirl back and forth across their large bedroom. They lived in a county park where their dad was the superintendent. I thought only princesses and girls who lived in parks got to take ballet lessons. I studied modern dance in college, but when I was in my mid-twenties, I got to live a dream: I began to study ballet and I became a dance teacher. For several years, I taught and danced full-time, went on pointe, choreographed, and performed. Twice lucky me: learning the discipline of ballet, of stretching, of controlling the smallest muscle all lend themselves to combating the spasticity I’ve developed.

My granddaughter, Leah, 3 days old, and me.

 17. A little over four months after my surgery, a new being entered this world: my granddaughter, Leah. One of the reasons I had my surgery sooner rather than later was to up my chances of being healed enough to hold my grandchild. And hold her I did, when she was three days old. My neck doesn’t allow me to care for her without assistance, but while she is small, I am able to hold her close and feel the ineffable bond that she is part of me and I of her.

18. Doug’s love for me, his caring, his acceptance, his desire to alleviate my suffering, his advocacy, his friendship, and his good humor are boundless. When I first moved here, I lamented the lack of birdsong. Doug put in bird feeders. When we were married, with just my old preacher friend Larry and our friend Lori in attendance, Doug called my mom on his cell phone and kept her in his shirt pocket during the ceremony. He buys me vehicles, shops, prepares meals, cleans, takes me to doctor appointments, encourages, cajoles, and puts up. But mostly, he gives me himself.

Doug & Leah.

Revised Body, Year Two 

So, it’s the first day of my second year with this revised body. Several months ago I got in the warm water therapy pool we are fortunate to have at our gym. After a few weeks, I screwed up my courage and got in the lap pool, which is a pretty funny statement, for I grew up swimming competitively. God only knows how many miles I’ve swum in my life.

Yesterday I came across the swimming journal my mom kept, where she recorded that I won my first gold medal, in the 8 & under 25-yard butterfly, at Santa Clara, on June 22, 1958. I kept that medal, because it’s one of the prettiest I ever won and it symbolized a dream. But I don’t remember swimming or winning. I remember that I sat on the deck under my green wool army blanket and that my coach promised me a chocolate milkshake if I won. I doubt that it was cold that day. Maybe I was meditating on turning butterfly into a milkshake. But the first day I was able to walk up the few steps to the platform during physical therapy at St. Mary's, as I faced front, I remarked to Gaylord and Doug, with a bit of a lump in my throat, "I've been here before." I was feeling a bittersweet triumph and remembering the many times I climbed up to stand on the top block at swimming meets to receive my first place medal or high point trophy. 

I still chuckle at a high school teammate’s pondering why we swam as fast as we could to get back where we started. I could never get back fast enough to qualify for Nationals, the prelude to my ultimate goal, the Olympics, so I swam in college just to be in the water with former Olympians. It was pre-Title IX, and I don’t think anyone trained seriously. In my thirties I did a few triathlons, just to prove I could, which required swimming a few laps again. 

Since then, I’ve often joked that I get in the water twice a year just to make sure I can still swim. It’s like riding a bicycle: you don’t forget.

Doug & me on my first day outside in 2 weeks,
a glorious summer day in San Francisco;
Sutro Tower is in the background.

Except it’s not so easy now. It’s a good thing I’d already given up flip turns and butterfly and now prefer backstroke. My shoulders are stiff. My abs are weak. I wear flippers to stay afloat. When I swim backstroke, I can hear a former coach yelling, “Get your butt up!” When I swim freestyle, I have to roll halfway over to breathe, like a new swimmer who’s still learning to turn just his head to take in air without gulping water. Doug has long suggested a mask and snorkel.

So? So I am blessed. I got to find out that life is a damn good place to be. Amazing things and people have happened to me. I still get to miss my students; go to the mountains, the beach, and the desert; bake in the sun; read a great book; feel a poem; visit with family and friends; make quilts for the growing number of babies in the next generation; listen to the wind and the rain and the birds singing; and be with my granddaughter.

Day Two of Year Two is approaching. Nearing the end of Day One the young bagger at the grocery story, after I'd responded to his question about my surgery, said he was grateful I'm here. I don't know how time will feel, but the road doesn't look bumpy and lumpy, and my granddaughter is already seven months old. I'd better get that mask and snorkel and get on with it.