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The swish of a pink, wet tongue on my face, “Wake up mommy, it’s all okay,”—I had fainted and I woke up lying on the rug with my furry friend licking my face. I put out my arms to embrace him. He knew that I would soon be on the couch, patiently waiting for the sun to set. I have been living with a chronic, debilitating illness for over two decades. This time a Category 5 hurricane had hit me. All I could do was to wait it out. For a chronically ill person, it is called a ‘“flare” or a “crash.” I write this essay to explain my illness, known as ME/CFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome). I tried writing this a few weeks ago. But it was too arduous then—today I can type while looking at the computer screen, without the letters dancing in front of me.
This recent hurricane swept me off my feet with a merciless bout of vertigo, so that I was even unable to lie on my bed peacefully, always feeling as though I was about to fall off. I needed help walking to the restroom and was unable to shower for days on end. On top of all of this my thyroid levels were out of range; I felt internal tremors and my hands and face were visibly shaking. Unable to hold a pen, watch television, or talk on the phone, and feeling dizzy with any sound or stimulation, I felt like I was in a coma-like state. Friends and family members took turns sitting beside me, holding my hand. I will always be grateful to them, but most of all, I will always feel gratitude towards my furry friend who never left my side.
My body was unable to retain enough fluids and my blood volume and pressure were so low that I often felt that I was going to faint. For the past year, I have also been going for weekly saline infusions to help blood flow to my brain and to help me balance. If I did stand, I moved from foot to foot, always steadying myself so I would not fall. This time I truly had hit rock bottom—I was feeling scared and hopeless.
ME/CFS is so debilitating that it is like being in a flu-like state 365 days a year. The fear looming over my head was the possibility of being bedridden forever, or, maybe living in a wheelchair. To fight this I sat on the couch, resisting my bed until it was dark. I made sure to never lie down on the couch, lying down meant that I was not putting up a fight!
I was in a wheelchair now, scared. I had undergone a battery of tests. Finally, after meeting with my doctors, knowing that I was being drained of my precious energy, I requested them to speak with my husband. I would rest and try to regain both my energy and spirit.
One day, I was looking out as usual from the couch, when all of a sudden it hit me like a clap of thunder—to surrender to the Universe. Surrender doesn’t mean to give up, but to let go. I opened my arms to the Universe and said, “Please let me surrender to you dear Universe, I am ready for what is and what will be and I am not fighting against myself or anything anymore.” Nothing happened! I opened my arms again with more faith and sincerity in my voice. Hoping that the Universe had heard me, I tentatively lay back on the couch, releasing my fears. I could still hear my uneven breathing and the sound of my heart pounding. I knew that all would be okay—there was no need to fight anymore.
I slept that night. The next morning I resumed my place on the couch, staring out, no thoughts, but I felt different—I was not fearful of lying down on the couch anymore. Another day went by and there was a light feeling in my heart and a voice saying, “You can rise above this, you have done it before and you can do it again.” From that moment on, I told my subconscious, ‘‘I am healthy and phenomenal things await me.”
The sun rose again, and again I was in my meditative pose on the couch. This time I dared to look at my iPhone screen. The first email that popped up was one calling me to listen to a webinar on how to change and shift my patterns in difficult times. I clicked on it and I was listening to a webinar. I was shaking and weak, but I took my eyes away from the phone screen and just listened, staring ahead. Something was awakening and the Universe truly was listening. Tears silently rolled down my cheeks as I knew this was a synchronous moment and the patterns were going to shift.
Lying on my bed, wearing headphones, I began to listen to special morning and evening meditations. At first it felt very uncomfortable and all I wanted to do was to pull off my headphones and scream. But then, gradually, with kindness, I relaxed and let in the sounds. It was unbelievable feeling white light and energy move through my body. I shook the first two days and the tremors increased. Maybe it was the energy starting up, not knowing which direction to take it was bouncing around in my body. On the third and fourth nights of the meditation, I woke up with nightmares and I knew my psyche had started up. I was back on my couch the next morning, but something was different. The mind had started up and bouts of sadness washed over. Over time I learned to release this and the feeling of emptiness was replaced with a warm feeling of love and internal gratitude.
I felt wooshes of gentle but warm gratitude for the simplest of things, the kiss of my furry friend, the air that I breathed, the warmth and love in the acts of my caring husband, family and friends. Synchronous opportunities are everywhere but we have to be aware and look for them.
People wonder and have these questions lingering in their minds: Why does she come for social events and laugh, maybe on a good day even dance like at a wedding? Why? My acts lie in the need to want to be normal, to experience what most of you do, to be carefree and enjoy such moments with gratitude.
You have to understand that ME/CFS people and their families live in a different light. When returning from that social event full of joy, they can experience the lashing winds of the hurricane all over again. This PEM or Post Exertional Malaise which we feel after an overexerted situation can bring us to a point where we have to stabilise by lying in bed. We do learn to pace ourselves to avoid a flare, but occasionally we go over the threshold which is a low one already. For example, showering in the last few months has been unbearable. It can take a week for me to gather up the energy to take one and even then I cannot hold the hand-shower or tolerate the pin-like feeling of water on my body. However after this ordeal, all an outsider can see is a smiling, well dressed person. As a community, we do not to ask for pity, but for awareness and a more empathic society.
I have taken the effort to write this for a purpose—to spread awareness for the ME/CFS community. An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed.
I have taken the effort to write this for a purpose—to spread awareness for the ME/CFS community. I would like you to be knowledgeable about this illness. An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed.
We all go through struggles and untold pressures in this fast paced society. Make a little time for yourself—breathe, realize the beauty of life and what you have been given and always look for opportunities to make it a happier place for yourself. Look within and see your inner self—if you need to shift any patterns, do so and bring your life to a frequency of internal peace, gratitude and joy. I am trying with the help of the Universe!
Check out showtimes for the award-winning movie Unrest which aims to spread awareness about this condition.
Geetanjali Arunkumar is an artist, ME/CFS activist and mother of two. She lives in sunny California with her husband and beloved dog. She can be contacted at firstname.lastname@example.org