I am tethered to my home, to a twenty-pound oxygen tank fitted with a six-foot cannula that permits me to go to the bathroom, to the kitchen, and to the in-house library but no further.  Although I did not begin writing upon learning of my idiopathic pulmonary fibrosis diagnosis, I do now write from my bed.

Writing this piece about my illness has been difficult, partially because I have never written about the illness that challenges me on a day-to-day basis and partially because the illness itself frightens me beyond any monster that has ever taken refuge underneath my bed, in my closet, in my nightmares, or more recently, in my daydreams. Facing the truth of this illness frightens me, so much so that for the past few years I have stayed busy in an effort to avoid looking idiopathic pulmonary fibrosis (IPF)  in the eye.

In the spring of 2012, shortly after my sixtieth birthday, I was diagnosed with IPF, which is a lung disease that belongs to a large group of more than 200 such diseases. Approximately 30,000 to 40,000 new cases are reported each year. The disease is characterized by injury to the tissue between the air sacs in the lungs; however, the primary site of injury, the airspaces, peripheral airways, and vessels are also affected.  IPF occurs in adults between 50 and 70 years of age; it is progressive and has no known cure. Upon my diagnosis in 2012, I was informed that I would live approximately three more years before IPF would take my last breath.  

Not unlike any number of people who live with a terminal illness, I soon became depressed. Suicide presented itself as a way out. Fortunately for me, an attentive daughter noticed my change in mood and behavior, and she insisted that I enter counseling. I did and was prescribed anti-depression medication, yet my feelings of being lost continued. My family members noticed my continuing feelings of despair and were always asking if I was okay, or if I needed anything.

Yes. I needed new lungs.  

By the second year of my disorder, I had begun to research treatment options and was accepted into a local transplant program at a well-respected hospital.  Nevertheless, I soon discovered that transplant would not work for me.  The restrictions that having this surgery would place on my body were as limiting as the disease itself; it involved a six hour surgery followed by a two-week stay in the hospital and one year of bed rest—complete bed rest—all on top of an extra twenty meds a day. I opted out and began to search for alternate solutions.

I came across stem cell transplant, a procedure in which the cells are extracted from the bone marrow. Of course, my medical insurance had not yet caught up with medical intervention, and I was forced to pay for the treatment out of pocket.  The first treatment came at a cost of $7500 and took every penny I had in savings.  At this point, I would caution folks who consider stem cell transplant as a viable alternative.  Some treatments are labeled stem cell transplant that really are not.  I found out much later that what I had been subject to was a platelet rich plasma injection (PRP), which extracts blood from the patient, mixes it in a centrifugal process, and re-injects it into the body.

The procedure took a couple of hours, including preparation and recovery time. Performed safely in a medical office, PRP therapy is touted as an effective counter to pain relief.  And indeed this manner of treatment provides temporary pain relief  without the risks of surgery, general anesthesia, or hospital stays and without a prolonged recovery; most people return to their jobs or usual activities right after the procedure. However, PRP did nothing to alleviate my problems with IPF. Still, I did not give up. I continued to search for a solution that would work for me. Stem cell transplant may be that solution, but I find that I must wait for medical insurance to catch up with science.

In the meantime—and the in-between times—my doctor put me on oxygen therapy.  It had been three years since my original diagnosis. I had made it past the “three years and you are dead” prognosis. And I began to look to literature for comfort and rediscovered Frida Kahlo.

Kahlo died in the summer of 1954 of a pulmonary embolism, but it is her life that fascinates me. As a teenager, she suffered an accident on September 17, 1925.  She had spent the day shopping in Mexico City and was returning home when the bus she was in collided with a trolley.  This moment transformed her life forever. Kahlo was only 18.

Kahlo's condition after the accident was so severe that doctors did not believe she would survive.  They thought she would die on the operating table. Her spinal column was broken in three places in the lumbar region. Her collar bone was broken along with her third and fourth ribs. Her right leg had eleven fractures, and her right foot was dislocated and crushed. Her left shoulder was out of joint; her pelvis broken in three places. The steel handrail from the bus produced a deep abdominal wound, which entered through the left hip and exited through the genitals. She convalesced for two years, but she would never fully recover.

Kahlo’s diseased body, her broken body, kept her tethered to her bed, to a small space within her mother’s home, where she lacked the freedom or dexterity to move about. With IPF and my need for oxygen 24 hours a day, 7 days a week, I too am tethered to my home. I cannot use the portable air tanks that emit pulsed air and can be recharged through a car’s cigarette lighter and last almost indefinitely. Instead, I must use the gas tanks that stand about the height of a three-year-old, weigh about seven pounds, cannot be recharged, and are only good for three hours. Movie theatres and grocery stores are out of the question. I order groceries online, and my daughter taught me about streaming movies so that although I may be a bit late in seeing the most recent offerings, I do get an opportunity to view them.  

While she was confined to bed Kahlo began to paint, using a small lap easel her mother bought for her. She had a mirror hung overhead in the canopy of her bed so she could use her reflection as a beginning subject for self portraits.  I keep a six-foot mirror propped against the back wall of my bedroom so that I can see who enters the front door. My floor is littered with books and papers that I have begun or nearly finished. Many nights my laptop sleeps with me.  Thanks to my renewed relationship with Kahlo  my poetry has become more assertive, less afraid, less timid.  I recently finished three poems for an anthology that the editors called “exceptionally powerful.”

I do not think I could have dealt with IPF at age 18, when Kahlo was struck with her debilitating injuries. Her dedication to her art inspires me. And eventually, I will figure out a way to go dancing with one of these tanks.