Discovering TRUE Strength

It has been some time since my last blog entry; I knew it would be a while until I would discover the strength to sit at the laptop and type; today is that day.

As my friends and readers know, I had long awaited and overdue spinal revision/re-constructive surgery on January 22nd. I have posted previously about my spinal diseases, and the issues they have caused me in the last decade. I waited over five years for surgery and finally, it is over!

I will share with you some of my experiences of the last month, and my own perceptions and epiphanies, in the hopes of documenting one woman's journey towards loving herself on a deeper level. I hope to inspire, at best, and to share a few smiles along the way.

Let me start in the operating room, as I lay on the cold hard table as the OR staff flitted around me, taking levels, preparing the IV for sedation. I did what I always do in operating rooms; I made jokes, I got to know the OR staff, and I worked to put everyone at ease with me.

For me, it is of utmost importance that anyone operating on me knows me as a person, not just a patient. I needed them to know I'm a humorous woman, with deep empathy, a daughter and husband. And we shared some laughs as the machines began to ping, and I felt at ease as the oxygen mask was placed upon my face. I was there, one moment, and then I was gone.

When I woke up in the recovery room my initial feeling was relief as I thought "thank God, that part is over" and then, horror hit.

"Oh god I can't move my arms!" I thought to myself.

I tried again and tears began to trickle down my cheeks, impeded by the oxygen mask, and I opened my mouth to speak but only grunts came out; my throat so sore from the oxygen tube which had been down my throat only minutes previous. "What if I can never hug my husband again... what if I can never hold my daughter?" I was sobbing now.

I locked eyes with a nurse and grunted loudly and she rushed to my side, "Mrs Bernstein why are you crying?" she asked urgently and very loudly. A few other bodies rushed to my bed and the next moments were chaos as people began asking me questions and all I could do was grunt "arms - can't move - ARMS - can't!"

The coming minutes or hours are foggy to me, as doctors and interns and nurses huddled around me, people poked and prodded me with several sharp instruments. I sobbed as I was asked "can you feel this?" and I did not. I would get jabbed in my shoulder and feel it, then feel nothing as people asked again and again "do you feel that??"

I don't know how long it was until one of the surgical staff was at my side explaining what had gone wrong; my Brachial Plexus nerve had been damaged during surgery. What the hell was a Brachial Plexus nerve for crying out loud? I couldn't think straight. He told me with no amount of doubt on his face that it was temporary and my arms WOULD return to normal. I tried to take that bit of information and hold on to it. My surgeon showed up and reiterated this to me, and I trust him so implicitly that peace began to wash over me. 

I knew that though it was frightening, it was temporary. And that was my salvation for the next few days. 

My few days spent in the Neuro-Critical Care Unit are a blur; I was on far too high a dose of pain pump Dilaudid and I spent most of my time there hallucinating and sleeping. What I do remember is trying to make others smile, and succeeding much of the time. My pain team, a good looking group of four hospital staff members would come see me often, to find out if I was comfortable, how my arms were doing, if the pain was controlled. Before I was given the pain pump they were confounded as to how i would regulate my own pain meds if my arms were not working. I told them "Put the pump between my toes, and I will use my feet. I have monkey toes, trust me it will work!" they laughed at me. And they doubted it, but I created a precedent at Toronto Western Hospital, being the first ever patient to use my feet to regulate my pain pump. Impressed the pain team, and shared a lot of laughs in the process.

I realized in that time that laughter really IS the best medicine. 

There were dark moments in those first days, mostly having to do with one particular nurse in the NCCU who was cruel, and truly not in the right field; she'd be far better suited to work in collections, or a prison... however, for the most part I connected to my nurses, and called them by name, and created heart felt connections with them.

Three days later I was moved up to the Fell-A ward on the fifth floor, progress was being made. I had requested to be taken off the pain pump, as the hallucinations were more than I could bear. I knew the dose was dangerously high and I was tired of hovering between dimensions. At one point during a heightened hallucination I was absolutely certain I was dying, and it was such a negative experience that I stopped using the pump altogether. I told my pain team to remove it, I did not want it. They respected my request and did so. So when I was put on the fifth floor I became reliant on the nursing staff to bring me my medications at regular intervals. 

During the day my experiences on the fifth floor were wonderful. I had such beautiful nurses, women like Rita, and Kaye, and Claudette were just so sweet and gentle and nurturing. But at night things changed at T.O. Western, and it was like being transported into a prison hospital; the personal degradations I experienced were horrifying, humiliating, and among the deepest betrayals I have ever experienced. Laying in ones own urine for nearly an hour, because no one will answer the nurse call is humiliating. Messing ones bed and laying upon it for nearly an hour is even more humiliating. After a week of nightly humiliating and atrocity one of the PSW's, a hilarious and gorgeous man named Rene (who preferred I call him Mr. Right lol) told me he was getting the Nurse Manager. I asked him not to, as I did not want things to get even worse at night, but he was livid at the treatment I had received. So a very kind woman came to see me, who's name I do not recall. She listened intently as I described to her how I would hit the call button every five minutes, first stating I needed help to the bathroom, and how each five minutes I would more urgently plead for assistance to the commode, and how eventually every five minutes I would state "I have wet my bed please come help me"... she was mortified, to say the least. I told her that many nights I would go for four or five hours between instant release pain meds, when I was on a two hour schedule. I explained how I had had an accident while getting myself to the bathroom one night, because no one would help me, and that when a PSW finally came to my room I asked her to please wipe the urine off my legs, and she said it wasn't her job, a PSW would clean me up in 5-6 hours.

After that talk with the nurse manager, I no longer suffered any more humiliation.

Let me please clarify here now, that aside from these night time shift issues, my experiences on Fell-A fifth floor were positive.

My final three days at T.O. Western were glorious, as my day shift nurse was a young man named Logan, who I instantly took a shine to. My night nurse was Claudette, a woman less than a year from retirement, who I had a deep heart connection with. I called her humming bird, as she was always humming gospel music and hymns. And she called me Jay bird, as I spent my first week on the ward naked under my blankets, experiencing viscous hot flashes, and wriggling out of my gown every time they put one on me. She was preparing for a trip Guyana with her husband to visit family, and enjoyed Sudoku so I gave her a big book of puzzles for her trip. I hope to visit the fifth floor in April when I go see my surgeon for a follow up, and I do so hope to see Claudette again.

Logan was an angel; truly born to nurse. This incredible young man, only 28 years old, was so competent, caring, attentive and sweet. He never missed a dose, or skipped a beat. In my early days on the ward he was witness to some violent projectile vomiting on my behalf, due to the insanely high dose of my pain pump. Later he told me that in all his years of school and work he'd never seen anyone puke as forcefully or as far as me, if there were a medal... I'd have won it lol. We shared lots of giggles. And I made sure before I was discharged that he knew in no uncertain terms that I adored him, and hoped he would always keep his zeal, passion and bedside manner - he helped me heal tremendously in his three days assigned to me.

I was released into the care of Toronto Rehabilitation Institute where the real healing truly took place. I have nothing but positive things to say about the facility, the staff, and every single detail. I was admitted on a Monday morning, and discharged that Friday. I was among a very small number of people discharged in under a week; the healing that took place there was nothing short of miraculous.

All of the nurses were wonderful, but I fell in love with Kokila, and Veleda, and I literally broke down crying when I was leaving. I waited at the nurse station as they were paged, and i hugged them both so tightly and thanked them. And they both teared up as well and told me to see them on my next appointment date; March fifth I will go visit them after I see my pain doctor, and I will take them both a card. I love them both so deeply and dearly.

I learned so very much about myself during my nearly three weeks in hospital and rehab; the most powerful thing I have taken away from those weeks is that I am strong. I am so very compassionate and kind, and I kick ass. I worked my butt off trying to heal, to get up, to walk. I worked so hard at my physio therapy, and my thanks go out to Tish and Margaret, my physio team at TRI. They helped me kick ass, and they approved my early discharge, as they saw how hard I was working, and they knew how driven I was to get home to my daughter and husband and pets. 

I feel so very blessed. I have been home a week and a half, and tomorrow it will be one month since my surgery. I am in pain at every moment, but it is the pain of recovery now; no longer the pain of disease and degradation.  My lumbar spine has been reconstructed, and as the weeks pass into months I will regain my ability to walk without the need of a walker or cane, and I have goals I will reach. I have lost 49 pounds since December 14th, and I will keep working at that, as I wish to spend my next forty years in healthy vitality. I want my outsides to finally match my insides; I am strong, beautiful, and fortified. 

My pain doctor, a wonderful man named Dr. Flannery, is a friend and colleague of my surgeon, Dr. Stephen Lewis; and he has offered to take me on simply because he can - it's a huge blessing, as there is currently a 14 month wait time for pain management in the Greater Toronto Area. He knows my goals, and he is going to help me attain them. One of my goals is to take my daughter back to school shopping in August, in a big shopping mall, and to be able to walk all over the mall with her, without aid, and without pain. He believes it is possible. And so do I.

I am grateful for this entire experience, all of it, the lonely scary nights, the beautiful moments of connectivity with nurses and staff; it all reiterated to me that people are at the core good, and kind, and that more than this: I am strong.

I am so much stronger than I ever hoped to give myself credit for. 

And I am only just beginning to tap into the vast reaches of my own potential. 

And for this I am grateful. To myself. I can't wait to see what I will do next.