Issue 12 / Winter 2018
“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 human physiology, and my only weapon was a working knowledge of English suffixes. But I wasn’t ready to surrender.
“The medication is given in shots. That’s the only way.”
Dr. Davino’s wiry gray curls sprang out like a bouquet of dandelions, and she blinked from behind her black-rimmed glasses. Her air of finality clashed with her billowy gauze skirt.
This was a blow. I’d been banking on that suffix to deliver me from the terror of giving myself a daily shot. There was one final avenue.
“Well – could someone at a doctor’s office do it?” My mind raced through a list of questions. How much would a $10 co-pay each day run me? Could I 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 abrupt tone was hard to read. I couldn’t tell if she was laughing at me, impatient with me, or sorry for me. Whichever it was wouldn’t change the reality – I had to learn how to give myself a daily shot.
A few weeks earlier, my primary care doctor had phoned me at work to give me the results of the MRI he’d ordered because of numbness. The phone call wouldn’t have scared me 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, the MRI indicated that multiple sclerosis was likely.
As a flaming extrovert, I knew I’d need to debrief with friends to help me cope. But this was also June, the most stressful time of the year in my job teaching fourth-graders. The mysterious malady which suddenly had a name had been sucking the energy out of me for a few months, leaving me exhausted. And each day now included hours of extra work: correcting end-of-year tests, filling out report cards, boxing up books for summer, and organizing a year-end camping trip for the whole class. I needed the support of friends, but learning any specifics about crippling effects of the disease would crush me with more anxiety than I could handle just then.
So each time I unburdened myself, I also instructed my confidant to withhold all negative information she might have about MS. I even put this muzzle on my sister, a physician.
“I can’t learn about it until I’m done with school,” I told her the night after Dr. Zander’s phone call. “I’m fine with ‘good news’ stories about MS, but I can’t hear anything bad.”
She 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 welcomed. I did hear others, though. Late one afternoon, I popped in the classroom of a fellow teacher. She was taking down brightly-colored self-portraits from the windows while I talked about my anticipated diagnosis. Pat nodded respectfully as I delivered my “no scary stories” admonishment, and then launched immediately into an account of her friend’s health.
“Oh, that’s a horrible disease! Just horrible!” she exclaimed in her robust Boston accent. “For months, he couldn’t feel his feet at all, and one day he stepped into scalding bathwater. The burns were terrible!”
I gasped, as much from the fact that this vignette had passed her “no scariness” test as from the graphic picture I envisioned.
“How is that a good news story?” I asked, horrified.
“Because now he’s great. He’s sixty-seven, and plays golf!” Pat was so genuinely compassionate that I didn’t tell her I could have done without the vision of third-degree burns.
But most friends kept it light and optimistic. The only other stories that penetrated my protective filter were those of ranchers, runners, hikers, and still-walking elderly people, all of them with MS. From my perspective, it began to seem as if MS were a condition that infused one with strength, vigor, and stamina. The mirage was soothing.
Over the next weeks, school ended, and Dr. Zander sent me to a neurologist. After some lengthy appointments with Dr. Davino, I had a confirmed diagnosis and a pile of reading material.
Dr. Davino explained there were four injectable drugs that might slow the progression of this incurable, immune-system disease. She handed me four boxes, and instructed me to read the four booklets, view the four videos, and decide my preference. Each pamphlet and video proclaimed the superiority of its medication over the other three.
The day after my official diagnosis, I stacked the boxes next 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 in my ears.
My extreme fear of needles was as old as I was. For my thirteenth birthday, my mom drove me to Capwell’s department store in Oakland to get my ears pierced. I keeled over after the first ear, and lay unconscious until the sharp sting of smelling salts yanked me back to a sea of shoe tops parading past my nose. In adulthood, I was committed to donating blood every ten weeks, though I usually fainted. Then the nurse would guide me, wobbly-kneed, over to the cookies and juice, where I’d scarf down sugar until I could convince the volunteer that I wouldn’t pass out again. Even distant relatives of syringes were too much for me. When I was twelve and my mom entered the bathroom to explain how a tampon worked, I started swaying and had to sit on the toilet seat, still fully clothed, my head down between my knees.
The informational videos meshed with the rosy initiation to MS I’d structured for myself. They gave no pretense that MS caused health and well-being, but each presentation featured some variation on the theme: green grass, sunshine and flowers, romping golden retrievers, bike-riding, laughter, and companionship. Even though the patients in the videos had a potentially crippling disease, that was no reason to sit 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 gleaned from these video sessions.
In between their cheery activities, the patients on film administered shots to themselves. 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, independently and calmly performing injections in any of seven different body locations. For those hard-to-reach hips, the demonstrations showed how to 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?
After taking copious notes on the pile of pamphlets and videos, I realized with dismay that I was leaning toward the drug that required a daily injection. The other medications were administered once, twice, and three times a week, respectively, which was a huge mark in their favor. But their possible side effects were significant, and all three caused flu-like symptoms afterward. I was reluctant to take medicine that would make me feel sick.
So at my third appointment with Dr. Davino, 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 was to be administered in Dr. Davino’s office. The nurse practitioner, Lynn, could teach me how to give the shots, and observe me afterwards for any allergic reaction. I perched on a chair, my elbow resting on the crinkly tissue paper-covered exam table. 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 clicked as she moved. The casual clothing, sandals, un-dyed hair – I liked the ‘60s feel of this Berkeley office. Sighing, I tried to relax.
As she held out a blue plastic object the size of an electric toothbrush, Lynn said cheerily, “Let’s have you inject in the leg today. You’re so slim that it might hurt a little if we start in your stomach.”
Oh, she’s good, I thought, perking up at the fib of flattery.
The blue object was an auto-inject device, which could do the dirty work for those squeamish about plunging the needle into flesh. I wasn’t mechanically inclined, so Lynn broke it down for me the way I break down fractions for my fourth-graders.
“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?”
“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. 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, more visceral. I was glad that the first one was done, 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 Craftsman bungalow, and shut both doors. It wouldn’t help matters if Cody, my big hairy dog, trotted through my sterile set-up. Then I laid out the materials: blue auto-inject, 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 thingy to take the cap off. I pulled, and the protective cap popped off the syringe, exposing the needle. Immediately, I knew something was wrong. The needle was ready to go, but the bottom half of the auto-inject was still lying on the 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 hadn’t even loaded the spring, and the plastic tube that was needed to load it was now holding the syringe.
Taking a big breath and trying to think intelligently, I gauged the length and diameter of my index finger. Concluding that it would work, I jammed it into the bottom half until I heard the spring click. Then I carefully removed the exposed 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 stab my finger.
Suddenly there was a plastic snapping sound. I’d 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 gasped, 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.
I almost quit, but forced myself to stumble 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. Counting hadn’t fooled me. This time, I resolved to count more quickly.
Nope. This was ridiculous. I needed something to push me over the edge, 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, the pressure building inside. It was finally that pressure that made me push the button and inject the medicine. I’d done it.
I thought I’d feel relief, but instead, I 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 and watched When Harry Met Sally.
Early the next evening, the phone rang. It was a patient-support case manager, asking me how my first home injection had gone.
“Well, I did it. But I’m one syringe short now, because I accidentally shot one all over the bathroom.”
The patient-support woman’s response wasn’t 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 my words 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. I had a boyfriend, but we hadn’t been happy, and I didn’t see that changing. 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 that we’re all on our own at some level, but in that moment, I felt it, along with 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 in that moment. 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, I felt less fearful of injecting, 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. It felt like a miracle. I was injecting myself!
Driving home one afternoon, I mused about 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 floated through my mind: “I am the queen of self-injection! I am the queen!” It sounded funny; I smiled.
Moments later, on my front porch, I pulled bills and ads out of my metal mailbox. Tucked in among them 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, in rounded script: “It’s good to be queen!”
I was dumfounded. Had I ever thought of myself as the queen of anything, prior to my self-declaration of two minutes earlier? Slowly, I opened the envelope, and out tumbled a photograph.
Of me. Wearing a crown.
I was – a queen.
My friend Alexa had taken the picture of me at a New Year’s Eve party eight months earlier. She’d sent it to me because she thought my hair looked really good. (It did.) But I like to think that something bigger than Alexa sent it to me. Something reminding me that I am stronger than my fear? Something telling me I don’t need to feel alone? Or maybe just something to make me laugh? I let it do all of those for me. I kept the photograph on my refrigerator for years.
I’ve since had experiences far more difficult than learning to inject myself ever could have been. Six years later, I listened to the doctor tell the wonderful man I’d married that he needed surgery for cancer. I’ve lost my father, and my mother. There have been other deaths, other losses. There will be more. I still get afraid of being alone.
I’ve been injecting myself for fifteen years, and now I don’t even blink when I do it. While I’m giving myself the shot, I can converse, listen to sports-talk radio, scold the dog, or answer the phone. I can’t safely keep more than one syringe in the bathroom; the experience leaves so little an impression on me now that just seconds after I’ve put things away, I sometimes can’t even recall if I’ve done the shot. It still feels like a miracle that I can do this.
I don’t even use the auto-inject anymore. It’s a little more painful without it, and more visibly 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 reminder that I can do something that once seemed impossible. It’s a touchstone, evidence that I can grow in ways I can’t always predict.
When I give myself that little stab with the needle, it’s 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.
Sue Granzella is a third-grade teacher in the San Francisco Bay Area. Her writing has been recognized as Notable in 2016’s Best American Essays, and she judges the humor category of the Soul-Making Keats Literary Competition. Granzella has received numerous awards in that same SMK Competition, and she won second place in a Memoirs Ink contest. Her writing appears in Full Grown People, Gravel, Ascent, Citron Review, Hippocampus, Lowestoft Chronicle, and Crunchable, among others. She loves baseball, stand-up comedy, hiking, road trips, and reading the writing of eight- and nine-year-olds. More of her writing can be found at her website and you can find her on Facebook here.