Breathing Vowels

/in /by

Some of the organs that can be affected by scleroderma are the lungs, so Dr. K referred me to a pulmonologist early in the diagnosis process to have a clear idea of the state of my lungs. I underwent several tests, and not all lab technicians were kind. I frequently felt like a specimen and not like a human being. “Breathe normally!” one of them kept asking so they could get a reading. “I think I am here because my breaths are not all that normal in the first place. You are not making sense,” I thought. “Why am I breathing through a machine?” “I don’t like this!” “This is so artificial.” “There is nothing normal about this…” And the technician would repeat, “Breathe normally! If you don’t, we must redo the test and start over again.” “Why is it my fault? How can I control this?” I thought, “Relax, breathe; it’s time to do yoga,” I remembered from mindfulness classes and yoga training.

Chest x-rays, CT scans, sleep study, …

The result day was scheduled months later because that is how it goes with our healthcare system. I did not choose my pulmonologist. My insurance did…I didn’t choose my appointment. I was just told. I did not participate in this process, but for breathing. And I felt that my breaths were under the hands of a stranger. Power over my life given to an insurance company that only sees me as a client, a specimen, a black dot on white paper, a member number, not a name, not a mom, not a poet.

I want to blow on my poems like people blow on their candles, year after year: one poem, one breath, words flying. Leaf, one, e, music notes, circular motions, a, strange print, standing, water, hand, head, stay, a,a,a, e,e,e, i.i.i. o,o,o,…vowels from my lungs, my poetry. Lyrics.

Dr. S said, “Results are not bad, some mild to moderate fibrosis. That’s the scleroderma. Sleep apnea, yes.’

Nih nih nih – i, i,i. His words sounded like chalk on a board.

a, e, o, u (breaths in English)

a, e, o, u (breaths in French)

I want to go to recess, run, twirl in circles, do a handstand, and walk upside down in a world that does not make sense.

ha

A Message: Unplug “Light Chemo”

/in /by

After one of my monthly blood tests, I received a call. I was at the ceramic studio on my mindful day. Art is my food. I usually do not answer calls or texts in my space, centering, forgetting, remembering, dot after dot, fingers, clay, circular moments, and breathing. But I noticed the number. It is saved under my contacts. I answered, “This is Dr. K’s assistant. She wants you to stop the methotrexate due to high liver functions immediately. She wants you to test again in two weeks and see you in the office.” It was a Friday when I usually took my treatment and held on for a rough weekend. “What does this mean?” I thought, “What’s next?”

For the following weeks, I lived in a state of confusion, yet enjoyed the days without side effects, without nausea, without holding onto Netflix shows and texts to my friend Robin to distract me during difficult moments, weekends filled with silly emojis and silly videos, breathing my way through treatment one text and one movie at a time.

I heard the whispers of the wind in the car. I amplified the volume of my French music, of my 80s albums, and of the hand claps each time I drove in the morning, in the rain, in the snow, in the sun – I enjoyed each face of nature like a kiss reminding me to live. From that moment, I felt a blessing, a hand to hold onto while I step forward to the days ahead.
Time to visit Dr. K, “Your blood results are better…Your lungs show some fibrosis…How do you feel about starting Cellcept, a medicine also given to transplant patients to suppress the immune system.” That is all I remembered from an hour’s examination of my extremities, fingers and toes, pictures, and lab results. “How do I feel about it?” I thought, “Do I have a choice?”

I found myself at the pharmacy reading a long list of side effects. Some included:

asthma, herpes simplex infection, infection, metabolic acidosis, oral candidiasis, pleural effusion, respiratory tract infection, systemic cytomegalovirus disease, urinary tract infection, viremia. “What in the world is this list? I don’t understand most of this,’ I thought

abdominal pain, acne vulgaris, “Is any acne not vulgar?”

anemia, anxiety, “I feel anxious just reading this list.”

asthenia, back pain, cardiovascular disorder, chest pain, constipation, cough, depression, diarrhea, disorder of integument, drowsiness, dyspepsia, dyspnea, edema, fever, headache, “I have one already.”

hypercholesterolemia, hyperlipidemia, hypertension, hypertonia, hyperuricemia, hypervolemia, hypokalemia, hypotension, “enough with the “h” fancy diagnoses!”

increased lactate dehydrogenase, increased serum alanine aminotransferase, increased serum aspartate aminotransferase, increased serum creatinine, leukopenia, lower limb cramp, myalgia, myasthenia, nausea, pain, paresthesia, peripheral edema, pulmonary disease, rhinitis, sinusitis, tachycardia, thrombocytopenia, tremor, vomiting, weight gain, chills, and flatulence. “this list is pure flatulence.”

malignant neoplasm of skin, dizziness, and insomnia. “Great. I already have insomnia. Let’s increase it!”

I could barely swallow the first pill. Due to scleroderma, which affects connective tissues and does damage multiple areas of the body, including the gastroenteric, I experience difficulty swallowing, especially elements than cannot melt or are fluid by nature, such as pills. My Cellcept medication did not want to go down…I had to breathe and not give up. “do not spit it out!” I kept repeating to myself. One pill, one moment.

I might gain one moment with my children, “Do not spit the pill! Each pill equates to a moment gained with my children. One moment. It could be the moment my youngest son Nikolai graduates High School, could be the moment my son kisses his wife at his wedding, could be the moment I hold my granddaughter in my arms when I pick her up from school, could be a moment when I step my toes into the ocean, one last sushi outing with dear friend Mae, one poem, one smile, one laugh, one pear picked up from my tree, one bite into life, one last round of wheel throwing at the studio, one last cheesecake for my Mom, one last silly emoji to a dear friend Robin, one last bite of chocolate, one last sip of coffee.”

One pill. One moment. One breath.

 

A Year of Memory Letters

/in /by

Literature shows that once diagnosed with scleroderma, life expectancy changes from unknown to three to fifteen years, pending cases. Unless diagnosed without symptoms, patients seem to live for decades.

Once someone is diagnosed, symptoms have usually begun, such as icy fingers and toes, discoloration, mycosis, gastrointestinal difficulties, …and so the slow disintegration of tissues, skin, muscles, and organs. There is no cure; there are only means to slow the inevitable. Medicine made to suppress an autoimmune system set to disintegrate its own body is the only solution to gain time. Time becomes a space where all colors, sounds, and aromas melt into one sense, where the time continuum is a moment, a snap of fingers, where smiles and holding hands are captured into a cocoon.

The only words I could whisper were, “My children. My children…My children.” They are the drums that guide my steps, and each drumbeat is time and time calling me. And I whisper, “My children, please guide me.”

As the drums beat to their rhythms, holidays and birthdays pass. Each of them was honored with cards. This year, I wrote additional cards and letters to be gifted to each of my loved ones the year following my passing, no matter when it would occur. One by one, they will be given. One by one, they will touch my children’s hearts and thank them for being my light strength. One by one, they will be reminded of their wonders. One by one, they will be set to unfold and fly away like paper origami flying into the winds. One moment. One year of cards and memories.

We think of wills, money, children’s custody, and welfare. I think of my children’s heartbeats to find a note, a word captured in time: a memory, an imprint.