I allowed my wellness to sink in this past week. Every morning I awoke with the thought, I am well. For the first time in thirteen years, I am not newly paralyzed and I am not ill. As this realization took over, it dawned on me, I don't know how to be well. I can do sick. I know how to navigate life with a blood infection, bone infection, and seething wounds. Taking pills, administering intravenous drugs, checking temperatures, wearing sweat pants, vomiting, grasping for hope, visiting the doctor constantly, and all of the daily pleasures that tag along with ill - these are my fortes. I know how to fight for breath and cling to life, living life, well, that is another story. I guess I can safely, with much embarrassment, say I am scared to live as a well person. I fought to live and now fear it.
For twelve years my life was a battle and I was a warrior. My role was to combat illness and remain strong for the ensuing hours each day brought. I slept, knowing the next morning I would wake up and still be sick and still need to care for myself. My focus was my infection and healing the infection. I built my life around sickness. The struggles and difficulties in my life became commonplace and I rose to the challenge and methodically crushed them, one by one. I clawed my way through a dozen doctors until I found one who diagnosed my infection correctly. I bravely conquered several, more than I can count, rounds of blood work testing, PICC line insertion, hyperbaric oxygen treatments, and emergency room visits. I immersed myself in medical language and became an expert. Nutrition and forcing food down my throat were struggles, after vomiting for years, but I wrestled them and ended as the victor. This is the life I know. These are my skills.
Today, I decided I need to rip off the band aid and start living as a well person. I need to stop anticipating the return of my previous life and start accepting the dream that is coming true right before my very eyes. There is comfort in not returning to my everyday life. If I remain diligent and steadfast and minimize risk, I mistakenly think I can control the outcome of the rest of my days on earth. It's as if staying inside is safer than venturing out, so why go out. But, I don't want to be this person. I work too hard at independence and mastering the hard things. Necessity spurs independence and I gladly accept the dare. I found purpose and meaning in the lessons learned while living such a turbulent life. I wish I were shouting from the mountain tops and jumping for joy, but I am not, I am too timid to take the first step. I worry the first moment I take that step, I will fall. I worry my dreams and hopes will, once again, shatter and disintegrate into the wind. And the biggest and most aching question of all, If I let go and start living again, will it be far more challenging than living as an ill person?
I can't answer or calm any of these apprehensions. I know I can't control life anymore than I can control death. Life as a person with paralysis is scary and frighteningly uneasy. It just is. There isn't much that calms the stirring waters of this life. The tides come in and they go out, taking with them what they choose and leaving behind broken rubble. But, I also know that sometimes, among the wreckage washed upon the shore, there are hidden treasures longing to be discovered. I put my insecurities aside, I focus on what is magical, what is filled with light, and venture forward hoping to find more treasures than rubble. I found so many gifts in my darkest days, I feel there can not be any left for me. However, I must remember this is not how life works. There isn't a tabulation of suffering or blessings. One is not more deserved than the other. My only option is to soldier on with a heart of gratitude and the will to spread love, kindness, and hope. I may carry a backpack of fear along the way, but it does not have to weigh me down - I can choose to put it down whenever I so desire and run free and dance to the music of my soul.
The next chapter begins tomorrow. I take my first step as a well person. I return to just Sarah sitting down. I feared getting to know this person the first time around and now I can't wait to meet her again. I'm guessing I already know her very well. She's been here all along just waiting for me to uncover the magic and beauty that comes with living life...well or sick, difficult or not. The journey isn't easy and I don't have pretend it is, but I do have to believe magic and beauty are always available, I just have to be willing to spot them and most of all, willing to live them.