It’s the little things in life that we unknowingly take for granted. Simple things like blinking, smiling or even having the ability to talk. These gestures and actions come natural to us; we don’t think how to smile, we just do it. Now imagine if that ability was suddenly taken away and the gesture of smiling did not come naturally as it once did. It had become a struggling process that took mental strength and, in the end, did not resembled how you originally smiled. How would that make you feel?
This is my story of courage, determination and endless fight.
November 2015, my ENT (ears, nose and throat) surgeon had diagnosed me with a Pleomorphic Adenoma Tumour (Benign, thankfully) growing behind my left ear. June 3rd 2016, I had undergone surgery to remove the growth; a relatively simple 2-hour procedure turned into a 7-hour intensive surgery. It had become worse case scenario, the tumour had grown and wrapped itself in between my left facial nerve branches. Consequently, in order to fully remove the tumour, the branches were cut, which resulted in permanent facial paralysis, called bells palsy. This is a condition where one side of the face droops or becomes stiff because the main facial nerves are/have weakened, damaged or cut. As a result of this unplanned situation, a neurologist was rushed in to help re-construct and stitch my nerves back to together in effort to minimize any further affects on my face. Imagine cutting a picture and trying to tape it back together, it never fully resembles the original.
Recovery was its own challenge and the hardest hurtle I have yet to encounter in life. To put it lightly, I was in absolute disarray of myself; I looked and felt like a mess. I was extremely irritable with a draining tube in my neck and the constant numb feeling on the left side of my face was indescribable. I was registered at a nursing unit where they would clean and monitor my incision to ensure it was healing as it should. These visits were heart retching because leaving my home was an emotional struggle, simply because I hated how I looked. My mother, would take me to my appointments and I would plead for her to park at the front so I could run inside avoiding anyone from seeing me because I felt like a monster. “I just want to be normal again!” I would tell her. The daily battles of recovery and my emotions were mentally exhausting. The lack of sleep, liquid diet and constant cries were taking a toll while all the negative thoughts were front and centered in my mind; “Can I get through this?” and “Will I ever love/feel comfortable with myself again?”
As recovery continued, I was referred to physiotherapy to help with nerve training. This gave me the ability and knowledge to work with building up my facial muscles and understanding how to use a paralysis face. Every few weeks I would attend sessions and learn different facial exercises that would help with strengthening the muscles. This took time, patience and commitment. When I started to see small facial movements, I was beyond happy, however, the result of these movements was not beneficial to my recovery. I had unfortunately developed synkinesis. For example, when I blink the corner of my mouth twitches up. I felt discouraged; two steps forward and ten behind but motivated me to work even harder on my recovery. Those who know me, know that I am not an individual who gives up easily, I will battle till the end.
My journey with facial recovery and paralysis was isolating. Despite my family and friends endless support, it was difficult to share my struggles because they could not relate to my situation. They could beautifully smile and here I was struggling to keep water in my mouth. I knew I wanted to help and support others who were struggling with their facial recovery. While generally helping the facial paralysis field with new research and so on. During a physio session, I had expressed my eagerness to help and my physiotherapist had presented me with a few amazing opportunities. I had participated in facial modeling (April 2017), where an instructor of physiotherapy used my face to teach therapist-in-training different techniques, exercises and strategies to help facial paralysis patients. I have allowed photographs of my progress to be used in physiotherapy workshops globally. I had participated in creating a facial paralysis support group of local individuals. January 2020 was our first group meeting, where I got to share my story and support others struggling with their condition. It was a motivational, inspiring evening and truly an honour to be apart of it. Unfortunately, COVID-19 had taken a turn for the worse and our meetings had come to a pause, however, my name is still on the list for anyone who needs someone to talk to about their recovery process.
During the early stages of recovery, it was difficult trying to find myself as I had a hard time accepting my new appearance. I often felt self conscious and paranoid that people were constantly starring at my crooked smile. This made meeting new people was difficult because I was so uncomfortable and worried, I would be misjudged as someone who always looked serious and unhappy. However, the fact of the matter was that I just didn’t have the muscle to smile but so desperately wanted to. It was a constant mental battle between working on recovery and trying to feel like myself. One day I was looking in the mirror and I started to feel like myself. It made me smile and despite the desire to cover it, I looked and made peace with myself. It was an overwhelming and happy feeling. At that point I knew the past was over and I was going to make my future count, “Making up for lost time!”
I love myself for not what I lost but what I gained through this recovery. I am proud of my recovery and each struggle faced. I had the choice to give up or fight and I choose to fight for myself and my future. I was given this life because I was strong enough to live through it. I was able to save myself, see myself, help others do the same and I smile because of that. I may look different, but I am who I am deep down inside and that does not change anything. Our appearances do not define who we are, it is what is inside of us that counts. Would I like to fully smile again, absolutely, however, being a facial paralysis survivor is so much more meaningful to me!
My facial paralysis progress as of today, I still have synkinesis with my eye and lip, no movement in my left eyebrow, lower/upper lip, which prevents me from fully smiling. My face is quite symmetrical with a few asymmetrical parts. At times I become shy meeting new people, however, I try to work through those moments as best as I can.
A special shout out goes to my friends and family, especially my mother. She was my rock during this journey; right from the day I was diagnosed with my tumour to my last day of physiotherapy. Her continuous positivity and loving support helped me navigate through that challenging time. Much love goes to her!
Josie was born and raised in beautiful Vancouver, BC into a large, loving Italian Family. Growing up in East Vancouver, she attended Thunderbird Elementary and Vancouver Technical Secondary, graduating with honors and a certificate of merit from the arts department. She has spent over ten years working in the Early Childhood Education (ECE) Field, while obtaining all three educating licenses. Josie's passion for quality care has lead her into various employment opportunities ranging from lead classroom teacher to director and vice director of childcare centers. That said, with the education and hands-on experience behind her she is now pivoting and working on fulfilling her next career goal within the ECE field.