“You said the medicine was ‘injectable,’ ” I said. “That means that it’s able to be injected. So you don’t have to inject it, right?” It was my third appointment with the neurologist, and I was battling her over proper administration of injectable medication. Sure, she was armed with her years of training in the physiology of the human body, and my only weapon was a working knowledge of English suffixes. But I wasn’t ready to surrender.
“The medication is delivered in shots. That’s the only way to take it.”
Dr. Davino’s wiry grey curls sprang out wildly like a child’s bouquet of dandelions, and she blinked humorlessly at me from behind her black-rimmed glasses. Her strict air of finality clashed with the billowy rainbow-colored gauze skirt that she wore.
This was a blow. I’d been banking on that suffix to help me escape the terror of having to give myself a daily shot. Since the suffix had betrayed me, I tried the only other avenue I could think of.
“Well — could I go to a doctor’s office to have them do it?” My mind raced through a checklist of questions. How much would a $10 co-pay each day run me? Would I be able to leave work early enough every day? Could they shoot me up on weekends and holidays?
The answers proved unnecessary, her definitive “No” trumping them all.
“You can’t go to a doctor every day. You will have to do it yourself.” Dr. Davino’s expression and abrupt tone were hard to read. I couldn’t tell if she was laughing at me, sorry for me, or impatient with me. Whichever it was wouldn’t change the reality — I was going to have to learn how to give myself a daily shot.
A few weeks earlier, in the first week of June, I’d been stunned by a call from my primary-care doctor. Dr. Zander had phoned me at work to give me the results of the MRI he’d ordered because of a small patch of numbness on my right hand. I wouldn’t have been nervous about getting his call if the MRI had been of my hand, but the imaging had been done of my brain. It didn’t sound good that my brain would warrant a phone call. Sure enough, I was unpleasantly surprised to learn that the MRI had indicated the likely existence of multiple sclerosis.
As a flaming extrovert, I knew I’d need to share this nerve-wracking information with friends to help me cope. But this was also the most stressful time of the year in my job teaching fourth-graders. The mysterious malady that suddenly had a name had been sucking the energy out of me for the previous few months, leaving me exhausted. And right now, each day included hours of correcting end-of-year tests, filling out report cards, boxing up books for summer, and organizing a fast-approaching camping trip for the whole class. I needed to talk to friends, but I didn’t want to hear scary stories of anyone they knew with MS. Learning the specifics about any crippling effects of the disease would crush me with more anxiety than I could handle just then.
So each time I’d unburden myself and tell someone, I’d also instruct my new confidant to withhold any and all negative information she might have about MS. I even put this muzzle on my sister, Ann, a physician.
“I can’t learn anything about it until I’m done with school,” I told her over the phone the night after Dr. Zander’s phone call. “I’m fine with hearing any ‘good news’ stories about MS, but I’m not ready to hear anything bad.”
Ann kindly played along, and told me my first cheerful MS story. “Jim just reminded me that we have a friend with MS. He’s doing so well that I forget he even has it.”
There we go! These were the kinds of stories I was open to. I did hear others, though. After school one afternoon, I popped in the classroom of Pat, a fellow teacher. She was taking down brightly-colored self-portraits of seven-year-olds from the windows while I talked about the diagnosis I was expecting. Pat nodded respectfully as I delivered my “no scary stories” admonishment, and then launched immediately into an energetic account of her brother-in-law’s health.
“Oh, that’s a horrible disease! Just horrible!” she exclaimed in her robust New York accent. “For months, Charles couldn’t feel his feet at all, and one day he stepped into a bathtub of water that was scalding. The burns were terrible! The skin was hanging!”
I gasped in shock, as much from the fact that this vignette had passed Pat’s “no scariness” test as from the graphic picture she’d painted.
“How is that a good news story about MS?” I asked, my brown eyes wide in horror.
“Because now he’s doing great! He’s sixty-seven, and he plays tennis every day!” Pat was so genuinely warm and compassionate that I didn’t tell her I would have cheered Charles’ tennis prowess even without that little tidbit about his shredded foot-skin.
But most who spoke to me about MS kept it light and optimistic. The only other stories that penetrated the protective filter I’d set around myself were those of ranchers, runners, hikers, and still-walking elderly people, all of them with MS. It began to feel almost as if MS were a medical condition that infused one with strength, vigor, and stamina. I knew it was a mirage I was seeing, but that was just fine with me. It was very pretty.
Over the next few weeks, school ended, and Dr. Zander sent me off to a neurologist. After a couple of lengthy appointments with Dr. Davino, I had a definite diagnosis and a big pile of reading material.
Dr. Davino had explained to me that although MS was incurable, there were four injectable drugs that had demonstrated some ability to slow the progression of this auto-immune disease. She had handed me four boxes, one from each of the respective drug companies, and instructed me to read the booklets, view the four videos, and decide my preference. Each pamphlet and video, of course, proclaimed the superiority of its medication over the other three.
The day after my official diagnosis, I carried the stack of boxes to my tiny TV/VCR combo and picked up the first video. Before I’d even jammed it into the VCR, I felt myself getting light-headed and heard the familiar roaring sound beginning in my ears.
My fear of needles was as old as I was, and it was extreme. I’d marked my thirteenth birthday by collapsing in a faint on the floor of Capwell’s in downtown Oakland, where my mom had brought me to get my ears pierced. I’d keeled over after ear number one; ear number two only happened after the sharp sting of smelling salts yanked me back to consciousness. I came to, vaguely aware of a sea of shoe tops and ankles passing by in front of my nose. In adulthood, I was deeply committed to donating blood every ten weeks, but teetered on the edges of losing consciousness every time I’d go. The blood bank nurse would guide me, sheet-white and wobbly-kneed, over to the refreshment counter, where I’d scarf down enough cookies and juice to convince the counter girl that I wouldn’t pass out. I couldn’t handle even distant relatives of syringes. When I was eleven and my mom joined me in the bathroom to explain how a tampon worked, I started swaying and had to sit down on the toilet seat, still fully clothed, my head down between my knees.
As I viewed the informational videos on the various medications, I found that they meshed surprisingly well with the rosy-outlook initiation to MS I’d structured for myself. In the videos there was no pretense that MS caused health and well-being, but there was an undeniable abundance of beauty. Each presentation featured some variation on the beauty theme: outdoor scenes, green grass, sunshine and flowers, bike-riding, lots of smiling, and companionship. Care was taken to show that even though the depicted patients had a potentially crippling disease, there was no reason for them to sit alone at home and mope. Once they injected the right medication, those with MS could head to a park, pick some flowers, and picnic with friends. “MS: The Happy Disease!” is the message I jokingly told friends I gleaned from these sessions at the VCR.
In between all their cheery activities, the patients on film were shown giving themselves shots. They made it look so simple — grasp syringe, wipe with alcohol swab, slide needle in, and head back out into the sunshine. The patients were unflappable, able to independently and calmly perform injections in any of seven different body locations. For those hard-to-reach hips, the demonstrations showed how an individual could coolly administer the shot with strategic use of a straight-backed chair. Why didn’t any of these people look as traumatized as I felt from simply holding the video box?
After taking copious notes on the pile of pamphlets and the four videos, I was dismayed to realize that the drug I was leaning toward was the only one that required a daily injection. The other three medications were administered once, twice, and three times a week, respectively, which was a huge mark in their favor. But the possible side effects of those three were very serious, and all three caused flu-like symptoms for the day following every shot. I didn’t want to take a medication that would make me feel sick.
So I explained my rationale to Dr. Davino at my third appointment with her. By the end of the hour-long session, after I’d lost the Battle of the Suffix, I had a feeling of relief that I’d made a decision, and of dread that I’d have to confront my fear by myself.
The first dose of my new medicine was to be administered in Dr. Davino’s office two weeks later. That way, the nurse practitioner, Lynn, could both teach me how to give the shots, and observe me afterwards for any allergic reaction. I perched on a chair, waiting, my elbow resting on the crinkly tissue paper-covered exam table at my side. After a few moments, Lynn breezed into the room.
“Okay! Let’s get you started!” She, too, wore a brightly-colored flowy skirt, along with a turquoise scarf and heavily-beaded earrings that swung and clicked together as she moved. The casual clothing, sandals, un-dyed hair — I liked the vaguely ‘60s feel of the people who worked in this Berkeley office. I let out a little sigh, and tried to relax.
As she held out a blue plastic object the size of an electric toothbrush, Lynn said cheerily, “So, let’s have you inject in the leg for today. You’re so slim that it might hurt you a little if we start in your stomach.”
Ooooh, she’s good, I thought. Though she had no way of knowing I’d always struggled with my weight, her decision to open with a fib of flattery had been effective.
The blue plastic object turned out to be an auto-inject device. Some kind soul had invented this thing; it did most of the dirty work for those who were squeamish about plunging the needle directly into a pinch of flesh. I wasn’t mechanically inclined, so Lynn broke it down for me the way I break down fractions for my nine-year-old students.
“First, unscrew the top from the bottom. Stick the top half into the bottom half and push it until you hear it click. Hear it?” I nodded dutifully. “That loads the spring. Now push the syringe needle-first into the top half. But leave the cap on!”
Oh, boy. There were already several steps to remember, and we weren’t even close to the stabbing part yet. I tried to concentrate while Lynn walked me through the process that ultimately led to my pushing the little button and delivering the medication into my leg.
“Great job! And it didn’t even hurt much, did it?” Lynn’s congratulations conveyed a triumph I didn’t feel. With shots, it wasn’t pain that scared me; it was deeper than that, more visceral. I was glad to have the first one out of the way, but I knew that the real test would come when I would inject myself at home, alone.
The next night, I entered the Jack-and-Jill bathroom of my little Craftsman bungalow, and shut both doors. No way did I want the distraction of my big, hairy dog, Cody, trotting through my sterile set-up. Then I laid out the materials: blue auto-inject, several alcohol wipes, and packaged, pre-filled syringe.
I washed my hands thoroughly, and then sat on the lid of the toilet, my pants lowered so that my upper left thigh was ready for the jab.
“Okay, push the syringe into auto-inject, needle-first.” I rested the top half of the blue auto-inject against the bathroom counter, perpendicular to the surface, and pressed the syringe into it until it would go no further.
“Good — now pull the little red plastic thingy to take the cap off.” I pulled, and the protective cap popped off the syringe, exposing the needle. I immediately knew something was wrong. The needle was ready to go, but the bottom half of the auto-inject was still lying on the bathroom counter. Crap! I’d pulled the cap off too early! I hadn’t even attached the spring-loaded plunger that would push the syringe into me. Then I realized I’d also neglected even to load the spring, and the plastic tube that I needed to use to load it was now holding the syringe.
Taking a big breath and trying to focus my thoughts, I gauged the length and diameter of my index finger. Concluding that it would work, I stuck it into the bottom half until I heard the spring click. Then I decided to carefully remove the syringe from the top half of the auto-inject. Should I re-cap it? Would that contaminate the needle? Would I then get a deadly blood infection? I decided against re-capping it, and instead pushed the bare-needle syringe butt-first into the spring-loaded plunger half of the auto-inject, taking great care not to accidentally stab my finger.
Suddenly there was a plastic snapping sound. I’d apparently pushed the “inject now” button, and the syringe, with nothing to hold it down, torpedoed out of its holder. It shot across the room, with expensive liquid MS medication spraying out along its trajectory. I stared in shock, thankful that I’d blockaded Cody from the bathroom and that I’d not had the open syringe aimed at my eyeball when I’d fired away.
Most of me wanted to quit then, but I forced myself to stumble out to the refrigerator to grab another syringe. Back in the bathroom, I loaded the auto-inject successfully this time, sanitized a large expanse of upper thigh with the alcohol wipe, pressed the auto-inject to my leg, and then took a deep breath.
“Okay. One... .two... .THREE!”
Nothing. My thumb didn’t push the button; my hand didn’t even twitch. Evidently, counting hadn’t fooled me into thinking I was ready. This time, I resolved to count more quickly.
“One — two — THREE!”
Nope. This was ridiculous. I needed something to push me over the edge, to force myself to make that tiny move of my thumb. Maybe I shouldn’t count.
So I just held the device to my leg and stared at it for a very long time, feeling the pressure build inside. It was finally that pressure that made me push the innocent little button and inject the medicine into me. I’d done it.
I thought I’d feel relief or pride, but I didn’t. Instead, I immediately burst into tears. I felt traumatized, battered, and very, very alone. I wiped off the drops of blood, got my dog, crawled into bed early, and lay in the dark watching my favorite video, “When Harry Met Sally.”
Early the next evening, the phone rang. It was a patient-support case manager, calling about the medication, asking me how my first home injection had gone.
“Well, I eventually did it. But I’m one syringe short now, because I accidentally shot one all over the bathroom.”
The patient-support woman’s response didn’t strike me as real supportive. “Do you know how expensive this medication is?”
The words spilled out. “I know it’s really expensive, but I didn’t try to do it! It wasn’t my plan to waste it. I messed up! It’s confusing, and I’m doing this alone! I’m by myself!” I choked back more tears and got off the phone as quickly as I could, the truth of what I’d just said slamming into me in slow motion.
I was alone.
I had never expected to be forty-three and living alone, but I was. I had no kids, and no husband. I had a boyfriend, but we hadn’t been happy, and I didn’t see that changing. Besides, he’d been traveling on the East Coast for six weeks. My friends and siblings loved me and were very supportive, but my moments in the bathroom with the syringe and my fear had made it very clear: when it came down to it — I was alone. I knew intellectually that we’re all on our own at some level, but in that moment, I felt it. And I felt a fear of being alone that stretched out into the unknown future. I knew that the MS might make my life difficult someday. But that’s not what I was afraid of. I just didn’t want to be alone.
Nothing changed outwardly that night. But somehow, feeling the aloneness so starkly was the start of my turnaround. Each day after that, I began to feel less fearful of injecting the needle, and more capable. By ten days in, my skill and confidence had skyrocketed. There were no more tears, no more episodes of counting, and no more squirting torpedoes. I wasn’t sure to what I could attribute this improvement, but it didn’t matter. It felt like a miracle. I was injecting myself!
Driving home one afternoon, I was marveling at how rapidly I’d changed in the few days since my phone call with the support lady. As I zipped through the dingy Webster Tube toward Alameda, the words came into my mind: “I am the absolute queen of self-injection! I am the queen!” It sounded funny; I smiled.
Moments later, I was on my front porch, pulling mail out of the black metal mailbox. Tucked in among the bills and ads was a stiff envelope hand-addressed to me, and alongside my name was a little sticker of a crown.
How weird. A crown? Then I turned the envelope over and saw written, in my friend Alexa’s rounded script: “It’s good to be queen!”
I was floored. Had I ever thought of myself as the queen of anything, prior to my “Queen of Self-Injection” declaration of just two minutes earlier? I didn’t think so. Slowly, I opened the envelope, and out tumbled a photograph.
Of me. Wearing a crown.
I was — a queen.
Alexa had sent me the picture of myself, taken at a New Year’s Eve party eight months earlier. I think she sent it because she thought my hair looked really good in the picture. (It did.) But I feel like something bigger than Alexa sent it to me. I’m not sure what. Something reminding me that I am stronger than my fear? Something telling me I don’t need to feel alone? Or maybe just something trying to make me laugh? It didn’t matter — I let it do all of those for me.
I kept the photograph on my refrigerator for several years, where I could frequently remind myself that I’d conquered fear, and that I was capable of more than I could have imagined. That Christmas, Alexa, who by then knew the story, gave me a little blue pillow embroidered with the word “Queen.” I love that pillow. I smile when I see it, and feel soothed when I rest my head against it.
I’ve since had experiences far more difficult than learning to inject myself ever could have been. My husband had surgery for cancer. I’ve lost my father, and my mother. There have been other deaths, other losses. I know there will be more. I still get afraid of being alone.
I’ve been injecting myself for ten years, and now I don’t even blink when I do it. While I’m giving myself the daily shot, I can carry on a conversation, scold the dog, listen to sports-talk radio, or answer the phone. I can’t safely keep more than one syringe in the bathroom at a time; sometimes the experience leaves so little an impression on me that just ten seconds after I’ve put things away, I can’t even recall if I’ve done the shot. It still feels like a miracle that I can do this.
I usually don’t even use the auto-inject anymore. It’s a little more painful without it, and more obviously invasive. When I do the injection myself, without an aid, I have to be more conscious, less passive. I have to actively grasp a pinch of skin between my fingers and pierce it with a needle, watching the needle go in. I am forced to think. It’s a quick reminder that I can do something that once seemed impossible. It is a touchstone for me, evidence that I can grow in ways I can’t always predict.
When I give myself that little stab with the needle, it’s sort of a “So there!” to my old fear. I can’t say that yet to my fear of someday being alone. But I can inject myself. That’s really something.