Often times we throw around the words "forever" and "permanent," applying them to things that actually are not either. Permanent markers eventually wash off, tattoos can be removed, and that office meeting that "lasted forever" actually only lasted an hour. Do we really know what forever feels like?
Many times in the last year and a half battling severe Ulcerative Colitis and 4 major surgeries, I have used the word "forever." There were so many times when it felt like I was going to be in my current situation forever. It felt like I was going to be laying in a hospital bed or in pain or too weak to walk forever, but in reality, none of those situations lasted forever. I am no longer in a hospital bed, in pain and too weak to walk. In fact, I am home, walking, and growing stronger each and every day.
When I began losing my hair, it felt like it would be gone forever. Would I ever have my long, curly hair back? Looking at pictures of my hair before I began to lose it sent a horrible feeling to my stomach- an aching yearn for something I simply could not have at the moment. Each time I broke down into tears sitting on my bed in front of my mom, grieving the loss of my hair, she would remind my that it would not be like this forever. She reminded me that my hair would, in fact, grow back. It would not be immediate and it would take immense patience, but it would grow back. And guess what? It did begin growing back. Starting as just peach fuzz on the top of my head, my hair began to grow back slowly, but surely. What felt like it would be forever ended up not being forever at all.
Even though it felt like I was making a permanent decision when I was faced with needing an emergency colectomy last August to save my life, I knew my situation would not be forever because my surgeon had explained the concept of a j-pouch and how it would eliminate my need for a stoma and ileostomy bag after 6-8 months.
But when my j-pouch became inflamed and ulcerated from left-over disease and needed to be removed, I was faced with making a decision that was, in fact, going to be "forever." There was no second chance. No alternative option several years down the road. My decision to remove my j-pouch meant that I would be acquiring a permanent ileostomy, one that could never be reversed. But even after I made the decision to proceed with surgery and have since began my recovery, the concept of "forever" still has yet to fully settle.
In the back of your mind there is always this little voice saying, "it is not actually 'forever'," even though you know deep down that it is.
I consider this part of the recovery from my surgery and my battle with Ulcerative Colitis as a whole. Physically recovering is one thing, while truly understanding and accepting that I am now living with a permanent ileostomy is a completely separate battle.
Sometimes it does not feel real. Sometimes I simply cannot wrap my head around the concept of "forever." But sometimes there are brief moments when the reality of forever hits me like a ton of bricks. I will have my ileostomy when I walk across the stage and accept my diploma next spring; when I get married; when I buy that tiny house on the beach that I have always said I wanted. But I will also have my ileostomy when I travel the world, empowering patients young and old battling Inflammatory Bowel Diseases and sharing my story with them.
When I was faced with making a decision that would alter my way of life for the rest of my life at only 23 years old, I was devastated. I cannot even begin to describe the overwhelming wash of emotions that making such a scary, life-changing decision brings. It hurts; it is the kind of emotional pain that almost hurts physically. You feel a sense of helplessness mixed with frustration, mixed with sadness, mixed with longing. But as I grow stronger, finally free of my Ulcerative Colitis and surgeries, I make a conscious effort each day to focus less on "forever" and more on simply living my life to the absolute fullest. I focus on appreciating every minute of every day and the beautiful world around me. I focus on my ability to eat the foods that will nourish my body back to health. I focus on the overwhelming sense of gratitude that I feel for my family for never, ever letting me give up.
My body will never be the way it was before. In addition to my ileostomy, I now carry around a half a dozen scars, each with a story behind them. But change does not have to be negative. Change may signal the end of something good, but it often welcomes the beginning of something even better.
I may never fully grasp the concept of "forever," but that will not matter when I am busy living my life to the fullest.