Sharing a Story Gives It Meaning

By Dianne

You are allowing me to share my voice in your head - that is a sacred responsibility. There is intimacy in living in someone else’s mind and sharing that moment and I want to acknowledge that. I also want to acknowledge that there are many different pieces to my story, and this is just one small part of that.

As someone who suffers from grief, loss, trauma, anxiety and depression, I find a lot of meaning in sharing my story. Just by receiving it, you are giving me meaning.

~ 

When I was about seven years old, I remember jumping in the back of my parents 1992 Plymouth voyager - you know, those ones with the wooden paneling on the side. I was eager and excited that it was finally my turn again to make the three-hour road trip to my grandparents’ house for the weekend. My grandparents were so important to me and my two older sisters. We cycled through visiting them.

My papa taught me how to fish in the pond behind their house. I always insisted he throw back the pregnant fish. He insisted he did, as if he could really tell (eye roll).

My grandma used to tell me I was going to be a doctor. Since I was seven years old, she was grooming me. We would play doctor together with her old stethoscope from her nursing days and her old leg cast from when she broke her femur - me and grandma ended up having that in common, as I broke my femur a year ago. 

She never stopped telling me how great of a provider I would be one day. Years later, they moved down the street from us so I got to stop by whenever I would pass their house on my runs around the block or on my drive home from high school. When saying goodbye, her five foot two inch, frail but mighty warm body would squeeze me as tight as it could around my boney hips and call me doctor. I'd roll my eyes, look down and smile, “you know grandma, I don't know if that's what I’m meant to be,” I'd say, before telling her I loved her and giving her a big kiss. 

My grandma died when I was a freshman at Brown. It was spring, we were in the middle of my lacrosse season. Balancing school and lacrosse was hard. I was still deciding on what major I was going to declare so I filled my course load with chemistry, calculus and neuroscience that year just in case I needed to go pre-med.  Grandma was always on my mind.

Fast forward five years. I had graduated from Brown and attended graduate school to become a Physician’s Assistant. I think Grandma would have been proud.  I was working as a surgical PA and living 25 minutes from my parents - never did I ever want to live that close to my parents but it low key was the best.

And the work. It was exciting and meaningful. I didn't mind being – as my colleagues would say – “verbally assaulted by our arrogant attending surgeons in the OR and overworked for being new by working all the weekend and overnight shifts despite what our contract said.” It was worth it to me. Call me crazy. I loved the thrill of the unknown emergencies that would arise, and the calmness those shifts required of me. And I loved operating. Plus, it provided me with a comfortable lifestyle, living within my means, saving for retirement, dating, living with my best friend from high school, dreaming about the future while loving and appreciating the present moment. I was no longer stressed with schoolwork 24/7. And I got to see my family almost every weekend. I made it, I thought. I was in my late 20s and living the life of my dreams.

A typical day for me?

My alarm goes off for 4:45am, I snooze it. 4:47am, snooze, 4:50…crap! I shoot up from bed, my workout class starts at 5:00. quickly I throw on the workout clothes I’d laid out the night before. Sneakers on, water bottle full, sweat towel and keys in hand and I’m off. I sprint down to my car. I pull a U-turn and I speed down the road one mile to my gym. I'm 2 minutes late. Trust me, nothing has changed there, except now it is maybe 20, 30 minutes late everywhere I go. They already started the warm-up run. I throw my belongings down and jet to catch up with everyone as they jog around the building in the crisp morning air. I'm half asleep but I don't want to be anywhere else. The intensity of this gym sets the tone for my day. Lights are out, music is blasting, and 25 athletes are pushing their bodies to the limit. There are free weights, cardio, yelling, teamwork - everything that gets my blood pumping and endorphins released. 

Just like that and it's over, all too fast. 

I'm back in my apartment. I hop in the shower. I only have 20 minutes before I need to be at work. I'm rushing to the max. But I live for this. I make it to work, change into my scrubs and sneakers and I'm at the table for change of shift and sign out - where my overnight colleagues give us report on what happened during their shifts and updates on all current patients on our census.

 It was March of 2020. It had been four years since I did a semester abroad in Greece and traveled all throughout Europe. It was time to travel internationally again. So, me and a couple of friends packed up and we were going to Brazil. We made it as far as Florida when the world shut down. When we began having to realistically consider if we would be stuck in Brazil if we went, we knew we weren’t going. 

Back in Syracuse, New York, I returned to work, - there is no work-from-home for hospital workers, so, back to my typical days…

On my days off, I’d sleep in and spend the afternoons hiking, going on long runs, roller blading, boating on the lake and watching sunsets. May I remind you though, it's July 2020. Everything was shut down. There wasn’t really anything else to do but to enjoy nature and appreciate what was right in front of me. I had to lean into that side of me, I needed an outlet - I was still healing from a breakup - which was really the least of my worries. I wasn’t able to hug or kiss my dying uncle or my newborn nephew due to the steady surge of covid-19 cases. Watching the sunsets helped. There’s really something about sunsets isn't there? Might it be that sunsets are a reminder that no matter what happened in your day, it can end beautifully?And then, just like that, an opportunity to reset. 

The sunset on Sunday, July 19, 2020, did, just like that, end beautifully. But the reset took a bit longer.

I had been working a four-day stretch of 12-hour shifts. After work I took a long shower, longer than usual actually, and I’m so glad I enjoyed it because little did I know that it would be the last time I would ever be able to shower myself. 

I sunk into the couch, pajamas on and hair still wet, as I looked out the window and saw the beautiful sunset. I couldn’t help but want to get a better view and enjoy the warm summer heat. I grabbed a blanket and climbed the ladder up to the roof like I had done plenty of times before. I lay up there watching the sun escape beneath the horizon, and then, as it darkened, admiring the stars take over the sky. The quiet peacefulness of the dark night cleared my mind. I remember reflecting on how free I felt - as if the world were at my fingertips. I felt so alive and powerful, recalling how I had been able to contribute to saving someone's life earlier that night. I have the best job in the world, I thought. I truly found my calling. This is what I’m meant to be doing. 

When it was time to descend the 12-foot ladder in the darkness, I lost my footing and slipped. As I was falling, I specifically remember expecting to land on my two feet. I'm an athlete after all. 

Instead, all of a sudden, I was on my back on the hard cement ground at the base of the ladder looking up at the same starry sky that had just provided me with such peace. I felt immediate pain in my right shoulder and thought, “that’s gonna hurt like a bitch in the morning.” Nothing else hurt though and I quickly learned why. 

I went to flex my abs and put my arm out to crunch my upper body forward, but nothing happened. I brought my chin to my chest and saw my legs were not where my mind thought they were. My knees were bent, and my legs were crumbled next to me. I went to move them, and again, nothing happened.

 In that moment, I knew that I was paralyzed. 

And then an eerie silence took over....the calm before the storm if you will.

I fell on top of my phone, so Siri wasn’t registering to call 911. I didn't know how long I had to prepare myself for the chaos and uncertainty that was to come before someone found me and took me to the hospital.

I didn't know how long I had to reminisce about my 27 years of life. To think about how relatively privileged my life had been up until this point. Did I take advantage of it? Am I getting punished? Would I have done anything differently? I had just settled into my job after years of schooling. Was it all for nothing? Will I ever operate again? I was so embarrassed and in disbelief with what just happened. Can I rewind? To my surprise, even with all these racing thoughts, I remained relatively calm. I knew I could do more damage if I panicked. All I could do was take a deep breath and wait for everything to change. 

As I was about to enter the OR to go into surgery to decompress my spinal cord and repair my broken neck, I finally broke down crying for the first time. I was on the phone with my parents, terrified of what the outcome would be - my surgical knowledge knew there were huge risks. When I woke up from surgery and saw my mom sitting next to me, all I could do was smile because I was so happy to be awake and alive. But then, seeing my mom’s horrified face, reality hit. I felt so bad for causing my family pain. I knew they were so scared, and I apologized endlessly as each one visited me, one at a time - covid rules. I blamed myself for what had happened – four years later and I'm still working on forgiving myself.

As the days passed and complications arose, I became so angry. Why aren’t my nerves waking up? Why can’t I wiggle my toes? Why can’t I move my fingers? Just give me my goddamn fingers… anger turned into fury. 

Unable to move the majority of my body while lying awake but with a breathing tube down my throat, I had panic attacks almost every night. 

The tube eventually came out but because my diaphragm was affected by my injured spinal cord, I had to relearn how to breathe entirely. This was complicated by a punctured lung, pneumonia, and a mucous plug. I was so frustrated that I wasn’t progressing. Twelve days after my fall, it was my birthday, and I was begging my attending for a tracheotomy as I felt like I was drowning in my own saliva. 

The outpouring of community support I received through cards, flowers and gifts kept me from entering a depression in the hospital. There was this one card that I had taped to my wall, across from my bed and right under the tv - I am brave, I am strong, I am loved. I would recite that to myself dozens of times per day. I am brave, I am strong, I am loved. I had so much gratitude in my heart and was hopeful that if I put in the work, I would make a full recovery - because that's what life had taught me up until this point.  I was never the smartest or most athletic, but I knew how to work hard. 

This eager and hardworking spirit, though, led me to try to move my new body before I was ready. I was alone in my room most of the time - visitors were still very much restricted - but I had no time to waste. PT and OT sessions were so short, I felt like it was up to me to practice swinging my legs to the side of the bed. How was I ever going to walk in six months if I can't even do that yet, I thought. Well, this resulted in many falls off the bed which of course left me feeling disappointed as I lay stuck and helpless on the ground. Once, I couldn't reach the call bell, so I just had to wait until my nurse came into the room and frantically called a rapid response. I quickly had about ten sets of eyes looking down at me. I felt like a heavy piece of furniture that they had to brainstorm how to lift. I later earned myself a new piece of hospital jewelry and this one said “fall risk.” I feel like they should have known considering how I got to the hospital in the first place. 

When I left the hospital and entered the next stage of my recovery, rehab at Boston’s Spaulding Rehabilitation center, I became overwhelmed as I learned just how many changes I would have to make in my everyday life once I got back into the world. “Recovery” was so much more than just going to physical therapy. Bowel and bladder management, chronic pain, low blood pressure, medications, pressure sores, UTIs, short-term disability, long-term disability, SSI vs SSDI, wheelchair fittings, adaptive tools, and equipment. I felt so alone, constantly trying to explain to people what I needed when I didn’t even know myself. Realizing that I would likely be in a chair the rest of my life made me question if I wanted to live this life at all. That was terrifying.

 I've always been an optimistic person, so these kinds of thoughts were so foreign to me. the American philosopher Cornel West says that “there's a fine line between optimism and hope. Optimism is a naive mindset,” he says, and “hope is real.” 

With time, I got the daily help and equipment I needed, and I settled down into a routine. My personal care needs and daily tasks became a little easier. I eventually accepted that I would never get my old life back, and I discovered that I don’t have to walk to be happy - don’t get it twisted, I WANT TO WALK and my will to walk will never cease, but acceptance helped me develop a sense of real hope for the future. Not optimism, hope. Hope for a cure. Hope that if I keep my body strong and healthy, once there is a cure, I will be ready. Hope, in the meantime, for happiness and independence. 

BUT, even with all that awesome progress and hope, grief persisted. Why? Because grief never really goes away. 

Grieving is physically exhausting. For me, I'm constantly feeling sleep deprived but then feeling guilty for sleeping too much because then I feel lazy and unproductive. So, then I go on autopilot, but on autopilot you can only go as fast as the speed limit and in this body the speed limit is negative two mph. 

This injury, on the surface, is a physical injury, and because of this, rehabbing the physical body is the priority. But grief is powerful and is not just in the mind. If we do not tend to our grief it will reemerge in our body and limit our recovery. We’ll stay frozen and dissociate. Then, it will show up in our lives as depression, stagnancy, disconnection from our emotions and relationships.

I’m a big believer in the phrase, “you can’t heal the pain you refuse to feel.” 

Feel the pain. Feel the grief and all the emotions that come with it.

You will emerge. When the worst possible thing you can imagine happens, you have to celebrate that you made it through, that you survived. It’s wrong to say you find a silver lining, but you manage to continue on. Day after day. One foot in front of the other, figuratively speaking of course - maybe I should say one rotation after another.  You make it your life’s work to survive this thing. I wouldn’t say it gets easier with time. Time definitely does not shrink grief. Your grief will stay the same, but your world will grow around it. 

I still struggle with my trauma and my grief from losing the life I built. 

Just last month I was on the couch in my apartment. It's Sunday and I'm forcing myself to relax and do nothing - which often makes me feel guilty “I don't deserve to relax or have fun anymore,” my brain usually tells me. And this time it feels like I'm being punished for it. My insulin pump is malfunctioning. I was diagnosed with type 1 diabetes, before my injury, when I was 18 years old. Technology has come such a long way and if it weren't for technology, I doubt I would be living on my own. But technology fails us sometimes. And on those days, I fear for my life. The thing with malfunctioning insulin pumps, once you troubleshoot the problem, it usually takes a few hours to truly know if it is resolved or not. Well, a couple of cycles of that and I've spent all day troubleshooting. This means my blood sugar has been hanging out at 400 or above for more than 12 hours. My body begins to feel weak, my brain foggy and I'm dying of thirst - but I've already finished the two water bottles I've brought to the couch. It begins to get dark, and this is when I start panicking. I'm brought back to the feelings of being stuck on the ground and the embarrassment that I need help. But I can't get in touch with anyone and that only makes the panic worse. If only I could get up and walk to turn on the lights, walk to get more water, and most importantly walk to get more insulin. If only my fingers worked properly maybe my troubleshooting efforts wouldn't have failed. Now I'm hyperventilating and I have flashbacks of the panic attacks I had in the hospital. It's a complete ambush. Instead of trying to suppress it though, I let it out. I'm balling until someone is by my side. I need a hug.  

You see, grief never goes away. But my world around me has truly flourished. Every day brings new stressors and challenges, and every challenge is an opportunity to learn and to grow. To make myself a better person. Not every challenge is a grief ambush, thank heavens. 

When you first get injured, they tell you your recovery will be between six months and two years. I laugh at that now. I dedicated two full years to just recovery. My sole focus was to get as much functional return as possible while pushing the limits of independence. I was going to therapy every day. I was trying every adaptive sport and treating it as a cross training opportunity. I was talking to as many experts in the field and as many people living with spinal cord injuries as possible. I was listening to as many SCI podcasts as I could. I was researching and involved in countless research studies. And I was having surgery after surgery so I could at least use my hands to my advantage. I didn’t stop doing any of that after two years, but my priorities shifted. I wanted to get back to work. I wanted to provide for myself, contribute to society and have a purpose again.

I’ve been open about my mental health from the very beginning which really helped me understand that I have perspective and empathy and patience that I never had before. My career as a surgical PA was dedicated to fixing the physical body but now more than ever, I know there’s power in healing the mind. Which led me to accept a position as a psychiatric PA. 

That has also brought its own challenges but I'm learning that this injury is a constant eb and flow of adapting. 

I still sometimes can't help but look at others my age and think how easy their life is compared to mine, how good and normal they have it. But then I look at mine and hell, some days I get more accomplished in one day now than I did before my injury.

Next week I'm being flown out to DC and then LA for a new job I took in the adaptive sports industry. You see, the disabled community is never a community you aspire to be in, but once you are in it, you realize how badass your peers are and you want to be involved with them as much as you can. I do. They are a community that lift me up like no other. I feel seen and heard. I never feel like a burden. So, when Heidi and Jess asked Stefan and I to start a support group for people our age, it was an easy yes. 

I miss my old life so much. I miss my relationship with my old friends, my relationship with my family. I miss being a naive optimist. But I think some of that comes with the territory of growing up. I was going to miss those things whether I got hurt or not.