By Amanda Lizon
For those of you who know me well enough to know about my surgical journey of late, you know that I have had almost as many minor and major cleft-related procedures as I have had birthdays. This isn’t what would be considered ‘typical’ for someone who was born with a bilateral cleft lip and palate, but it has been my reality, and is others’ realities too.
Those same people who know me well enough to know my surgical count also know that I do my best to see the positive parts of everything I endure. I always try to see the light at the end of the tunnel, focus on the pros rather than the cons, and remember that everything I have been through in my life is what has shaped me into the young woman that I am today.
However, and that’s a big however, surgery is tough and it can sometimes take its toll. I had my most recent surgery in September of 2016 – it was the second time I had orthognathic jaw surgery, and the fourth time that I had a bone graft where they used bone from my hips. The last time I had this procedure done, it was 2011 and they had to break both my jaws to advance them. The plus side for this more recent surgery was that they only had to break my top jaw… Yes, that was the plus side!
I have a fantastic support system in my everyday life. I have wonderful parents who have been there with me through every step of the way. My grandfather lives with me and always offers to run up and down the stairs for me when I’m too weak or tired to do them myself. My brother and sister-in-law always check up on me and offer their support and friendship. I also have a very sweet boyfriend, who loves me unconditionally (even when I am unhappy with my constantly changing appearance). I have many wonderful friends, and a very best friend who generally knows how I’m feeling without me ever having to put my thoughts into words. She is always there to offer me a hug and a shoulder to cry on, and will hunt down whatever my most desired food craving is (within the soft-food limits of course).
Despite my support system being incredible, surgery is a very mentally, emotionally, and physically challenging experience.
The mental struggle begins for me when I am told that I need another surgery. As an adult, it’s generally not socially acceptable to start crying – so that begins once I’m behind closed doors. After that initial cry, I am generally okay until about a week before the procedure. That’s when the pre-op blood-work happens. Blood-work, and the accompanying needle, is something I struggle with. People ask me all the time “they can break your jaws and you don’t cry but a little pinch of a needle and you cry?” Yup. That needle symbolizes every time medicine has been injected and burned into my veins over the course of my life, and it is terrifying. The blood-work is also a reminder to me that surgery is really happening, and soon. That is when the series of questions run through my head, mostly the same questions each time. Will I wake up? How much will it hurt? Will it work the way it’s supposed to? Will it change my appearance (for the better, or the worse)? How long until I can play hockey? How long until I can eat anything I want again?
Seconds anyone??? I’ll pass on firsts.
The physical pain begins even before the actual procedure for me. As with any procedure that requires anesthetic, you must begin fasting at midnight. If you are having a procedure on any area of your body other than your mouth, you can fast knowing that you can eat whatever you want once you wake up and come-to. However, almost every procedure I have had has required a liquid diet for a few days, and then a soft-food diet for seemingly-forever. Therefore, that means my fasting-of-foods-of-choice begins at midnight and ends approximately 8 weeks later. Sometimes I prefer to eat nothing at all, and endure the physical pangs of hunger, rather than eating the same mushy foods day after day. This is another one of the biggest areas I struggle with.
The emotional struggle also hits me the hardest the day-of, and before the procedure even begins. First you must sign the paperwork that acknowledges the specific procedure that is about to be done, and accept the risks that accompany it. Next, you must undress from your comfort clothes and re-dress in hospital gowns. This undressing, to me, feels like stripping the control over my life and handing it to someone else. Never mind the terribly unfashionable, open-back, freezing, ugly gowns they give you. Finally, the last stage of emotional struggle before they’ve even operated yet is being put to sleep. Those dreaded needles again. “Count backwards from 10 and have good dreams…” – “10, 9, 8……………”
After waking up, and for the next few weeks, the mental, emotional, and physical struggles are all intertwined, at least for me. I generally wake up in discomfort as well as groggy, hungry, needing to use the washroom, and feeling pretty alone (particularly as an adult, where they don’t allow family/friends in recovery). For the next few days and weeks, I struggle with what foods I’m able to eat, and which ones I should probably steer clear of. I spend a lot of time with ice packs to help with facial swelling, I live in my pajamas so that I’m comfortable, and I watch repeat episodes of my favourite TV shows which allow me to drift in and out of sleep without missing anything. I struggle with taking pain medication because it is a double edged sword – medication help with the pain and the discomfort, but then cause a bunch of other side effects such as lack of appetite, nausea, constipation, and/or diarrhea, just to name a few.
I also struggle with forgetfulness – that is, forgetting what it feels like to feel good. Not tired, not sore, not angry or upset. I forget what it feels like to have a good appetite, and I forget what it feels like to bite into something without feeling like everything will break. My understanding of ‘feeling well’ just becomes a comparison of relativity. Yesterday, I felt like I was hit by a truck. Relative to yesterday, I feel better. Relative to a week ago, I feel great. Relative to 6 weeks ago – I just don’t remember.
I also spend a very large amount of time thinking about when
I can get back to my regular activities, such as school, work, events, birthday celebrations, sports, etc. My surgeon, orthodontist, and my entire support system can all attest to how much I bug them about when it is safe for me to return to playing and refereeing hockey. I know it kills all of them on the inside watching me miss out on the things I love, but they also want to protect me and make sure everything heals the way it should, and for that I am grateful.
Eventually, I begin to remember what it feels like to feel ‘normal’ versus relative to the days or weeks before. Eventually, I am given the okay to eat a pre-surgery diet again. Eventually, it is safe for me to return to my regular activities. Eventually, the every-day thoughts of the procedure turn into memories. Eventually, I realize that I am okay and that life goes on, however, the recollections of surgery stay ingrained in my memory.
This is the first time I have ever shared my thoughts on paper about the experience of going through the mental, emotional, and physical struggles of surgery. I am not writing this because I want or need anyone’s sympathy, and I certainly don’t want anyone’s pity. I’m writing this for my family and friends who continuously provide me with support. Thank you for doing everything you have done for me over my lifetime to make this process easier for me, and for what you continue to do today.
I’m also writing this for the parents, friends and others who have or will be supporting someone through surgery and treatment. I hope that it is helpful knowing the things I have experienced, which, to some extent, may be similar to what your loved one has or will experience, even if it is not said out loud.
More than anything, though, I’m writing this because I know that I am not alone in this journey. AboutFace has impacted my life in a way that I cannot fully describe to anyone. The connections and friendships I have made through being involved with AboutFace, and the understanding amongst friends is priceless to me. It is what keeps me going with a positive attitude and with my head held high. I am a firm believer that everyone’s journey of living with a facial difference is different, but the overall understanding is always there – we are in this together.