I am finding it difficult to write at this moment in my life. Every time I try to do so, my mind goes blank. The reality is that for the first time in a long time, I am scared. I have noticed that there’s a feeling of sadness pervading my mood these days. The loss of friends by natural causes and by life choices, my elderly mother’s issues and the deterioration in my mobility all contribute to this feeling of malaise.
I am having dreams that are very vivid and intense, where I am still walking, running, visiting places all over the world and behaving the way I used to be before I landed in a wheelchair. When I wake up and reality hits, I have a sense of panic. The reality that nearly HALF of my body no longer works right rolls over me like a gigantic boulder. My heart begins to beat faster and faster as I imagine myself TRAPPED in an immobile cage that was once my body.
As a result of Inclusion Body Myositis, the chronic, progressive, untreatable neuromuscular condition that engulfs me, my legs no longer work. My left hand and arm are virtually useless and every day I feel my right hand and arm gradually weakening as well. Right now, I’m typing with one finger, the only one strong enough to press a key. I often have to take breaks because my shoulder, the last muscle left in the arm area that I can use, gets very tired.
Every day, upon waking up I quickly realize that my dreams of strength, wellness and mobility were just that, dreams and not real. The dreams are replaced with panic then sadness. It is not a crippling sadness, more like a persistent annoying buzz of an unwelcome flying bug that prompts my mind to start running.
I find myself questioning life’s most intimate dilemmas, that include punishing myself for dripping salsa on my newest shirt... three weeks earlier. Lately, I’ve noticed that it really doesn’t matter where my thought processes start, I end up wrestling with the reality of five years in a wheelchair. I’m surrounded by the “whys” and “ifs” of my health problems. The Ying and Yang of hope and sadness, life and death pervades my thoughts.
I have no time to play hide and seek with my monsters. If I would do that, they would own me and despair would drown me. I have been in that dark place before. I am not going back.
The first thing to confront and identify the actual feeling. Is it fear? Anger? Sadness? Resentment? In my case, the biggest demon is fear. The fear demon is the image of myself trapped in a cage of a totally unresponsive body. I start thinking of the future, the nature of my degenerative disease, the pervasive loss of mobility and the fear of not being able to defend my happiness against that huge threat.
In that specific moment I give my own heart a little push forward, then together with my heart I become “The Little Prince” from Antoine de Saint-Exupéry’s book of the same name. I, like “The Little Prince”, find myself gazing in wonder as the sun sets below the horizon and I quietly undeIrstand that there will also be a sunrise. I’ve learned to accept and even to celebrate the inert intimacy of my feelings and the capability I have had, thus far to confront and overcome whatever tries to steal my ability to seize, cherish and enjoy every day left in my life. I wake up from that temporary unpleasantness of defeat but also hiding in the corner there is always the hint of hope smiling over my land.
“To sleep, perchance to dream - ay, there's the rub, For in this sleep of death what dreams may come...”
“There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy.”
-William Shakespeare, Hamlet.
After waking up from the nightmare, this quote came to mind. I opened my eyes and instead of sinking in despair, I realized I am still alive, safe and in love with my life. Because my life is the perfect storm that I conquered. The masterpiece I am sculpting slowly, day by day.
My life is at a turning point but my voice is still intact. I will never let silence reign over my mood because when I wake up from that dream, I am not a tragic character like Hamlet. I’m the pulse, and I’m the pen. I am the thunder after the lightning. The spark of light that will calm my heart and let me know there are many more dreams to dream and for that, I’m thankful. ¡Que viva la vida!
It’s not just another day, it is also one precious day less. I am going to make it count! Time to wake up from my dream and be thankful for the gift of life. Time to get back into the fight for my happiness like only I know how to do. It is my happiness, my treasure to keep safe, even when surrounded by the threatening, whirlwind.
It is my life and I will make happiness a reality one more time. Because I can.