I don’t know why I stopped writing this year—it is so much a part of me.
When I don’t write, I am not fully present and connected to not only myself but the world. And connection is key.
Wait—I do know why I stopped writing this year, aside from a handful of times. I’ve had five surgeries in the past 12 months. (Six in total, if you include my initial surgery in January of 2012.)
These were not little surgeries.
I had six surgeries on my gastrointestinal track, and my small and large intestines and colon. I received a pretty bag as a present, one which will never go away. But I am grateful. Six surgeries later I truly am grateful.
I have gone through phases of not wanting to talk about my health at all to publicly blogging my health roller coaster. It’s part of the nature of living with multiple chronic autoimmune diseases: feeling alone in the journey, and wanting to move forward, “killing” the “sick version of me.”
It is hard to explain where I am at. Except to say, I am healthy.
Sure you might be doubting me—how many times have I claimed this before, only to have the universe test me again? It’s thrown me back in the hospital for months on end and disrupted the life I’ve been trying to piece to together at age 34 after the past five years have essentially been lived in and out of hospital beds.
I used to tell my nurses at Scripps in La Jolla where I spent almost all of August through November of this year inpatient, that if I got paid for my time in there I would be rich! The hospital was literally home to me. Hence the nature of the human body and the roller coaster of health.
It made me realize health, just like anything else in life, is not certain. There is no guarantee, even with surgery. But there is hope. There is faith. There is perservarance. There is love.
Just because I have spent the majority of the past years on feeding tubes, oxygen tubes, IVs, ileostomy and colostomy bags, and extreme rounds of narcotics (which all of the doctors literally had to fight me to take regardless of the excruciating pain I was in), I made it. And believe me, I took myself off narcotics at my first chance!
But what did I “make?” Am I healthy? Am I sick? Is there a middle ground where I am slowly emerging back into the world? When I enter a yoga studio that I haven’t been part of in almost a year, aside from a time here or there on a “good day,” and people stare at me, I wonder—who are they staring at? Are they looking at all 85 pounds of me and thinking I look good or bad? Are they wondering if I am sick or healthy? Are they waiting for me to enter one class and then go missing in action for the next few months? Or am I just paranoid?
I don’t know the answers to these questions. I don’t know how to put my life together. I don’t know how to avoid my “past health” stuff without tons of questions. I don’t know how I feel about discussing things. It changes daily. As does life.
My health was my job.
A job that was all consuming for so long. I lost a lot: careers, apartments, milestones, relationships, friendships, the avid athlete that I was. I have been stripped literally of everything in my life. I don’t say this as a victim. Don’t feel bad for me—I don’t. But I know what it is like to find the joy in the simple things. And that is truly what life is all about. The simple things. I think it is so important to remember that this time of year more than ever.
There’s the hustle and intense energy of the holidays, and people going crazy buying gifts. I mean who doesn’t like a new sweater or iPad? But really, as someone who has lost it all and was told over and over this year that I will be “lucky” to survive through surgery, I can tell you it’s not about the sweater.
Life changes you. Let it. Don’t let the things change you. Don’t let the date on a calendar make you appreciate someone or buy a gift for someone because you are “supposed to.” Don’t wait to express your authentic version of yourself. Don’t wait to tell someone you love them.
There have been so many moments I have missed out on. But there have been so many moments I have been blessed to be part of. This being my last and final surgery this past November, I spent my 34th birthday in recovery at Scripps. It sounds crazy but this surgery and this birthday were the best by far. (I have spent many holidays and birthdays in the hospital.) But this time was different. I am different. I can’t truly explain it and unless you have gone under a life or death situation, it might not make any sense to you. But during this surgery and recovery in November part of me died. And part of me lived. And part of me was truly reborn. To the point that when I first got home post-surgery, I didn’t know where I was and I didn’t see myself in the mirror.
Everything drastically changed. Everything continues to. Life is not perfect. Life is busy and crazy and some days are so challenging for me.
I am adjusting to life with an ileostomy bag forever. But it’s not just a bag I am learning to transition with. I am dealing with a bag that leaked sh*t all over me in the airport. I am dealing with trying out different foods and realizing, okay you cannot eat peanut butter because it is like trying to get cement out of a bag. I am learning that eating too much ice cream makes my bag all water and causes my bag to loosen, leak and cause a skin infection and burn me.
I am learning that I get about two hours of sleep, and then have to wake up, empty a bag and then if I am lucky I get another two or three hours of sleep per night. I am learning that I will never get to sleep a full uninterrupted night again. I am learning that I can never do certain yoga poses again—all of the poses where you lie face forward. (Yes, that also means I can never get a massage again!)
I am learning that when I go out not only do I need all of my supplies for my diabetes (which I have had since 1987), that I now need all of my food snacks, extra ileostomy bags, baby wipes, and extra clothing. I am learning that the food you eat or don’t eat will have a great impact on your day. And I am also learning that eating a marshmallow before yoga stops my output for an hour so I can actually enjoy yoga, try to get into a meditative flow and not have to empty my bag every few minutes.
The point is I am learning. I will continue to learn. I will continue to find that balance between health being on the forefront of my mind to on the back burner. It will take time.
What I know is this:
I didn’t lose who I was. I was always an avid athlete. I haven’t been to a spinning class or the gym in almost a year aside from a few times, and a part of me is scared to go back because my body is no longer muscular and strong—I am starting from scratch. But I realized I lost the parts I needed to. I lost the addiction of knowing myself and identifying myself with being “the athlete” or being “the patient.”
I am just Kerry. I am 34. A part of me died. A part of me was born. I am not a writer. Or an athlete. Or a patient. I am just me. I am full of love. Full of hope. Full of faith. I believe in love. It makes the world go ’round.
So when you are buying your gifts and feeling overwhelmed with the intense energy of the season, remember what is important.
Yesterday, it was taking the first steps.
I was enveloped in love walking into the yoga studio. I was hugged by two amazing friends and teachers, Lindsay and Trevor. I can only say that they have gone above and beyond my health roller coaster this year and been more supportive than they will ever know. It is a bond that honestly brings me to tears. Even when months went by and I we missing in action—living in the hospital—there was ongoing and unspoken support.
I don’t have all the answers. I don’t want all the answers. I am just figuring it all out. As we all are, in different ways in our own worlds.
But we are all connected and when we are all present, not buying presents we are authentically who we are. Be love. It’s on my car bumper sticker. It’s tattooed on my arm. It’s the only thing that matters.
Tis the season. Today and every day.
Author: Kerry McQuade
Editor: Catherine Monkman
Photo: Author’s Own