sit-your-ass-down disease.
And here I am again. The tick of the IV pump next to me as the fluid moves from a hanging bag through the plastic tube that enters my body just above my elbow on the inside of my left arm by way of a bed-side procedure. Antibiotics to fight the infection in my lungs and anti-naseau medicine to fight the side effects of the antibiotics. The bedside table on wheels flanks the other side of this bed-island piled with journals, water bottles, a bottle of digestive enzymes, my markers, and my favorite coffee mug formed out of the red clays of Lake Naivasha, Kenya.
A few people reach out. Fewer after they get to know that this is my norm and isn’t a dramatic hospital stay. After they normalize my condition. They say, “How are you feeling?” It’s a complicated question that no one really wants to hear in my reply. Instead of saying, “My body hurts, my lungs are starting to feel less congested at the cost of my ribs and intercostal muscles beaten by the respiratory therapist with the best intentions. My esophagus is spasming from the steroid medications, which makes me think I’m having a heart attack and I continue to scare the shit out of the nurses. I am reduced to accepting the shame of asking for pain medication. I am lonely, but not in a way that is fixable. My mind is unsteady and waffles between optimism and despair.”
Instead I reply, “I’m doing ok.” Sometimes I add a smiley face emoji for emphasis on the ok part.
My husband of 22 years calls the disease that I live with the sit-your-ass-down disease. It’s medically referred to as cystic fibrosis, but I prefer his title for this life-shortening chronic illness. It’s more descriptive of the double life I live - one side out in the world and one side behind the heavy wooden-looking door of a room on the sixth floor in the hospital; the door that clicks shut and isolates me for two weeks at a time.
Outside in the world, I move quickly, urgently through my to-do lists. The constant ache in my lungs fuels my intensity to live as much as I can. I am a mother of a brilliant college student and partner to a kind man and loving father. I work in the field of education and the environment and concern my three to four gigs with impacting the wellbeing of the world - natural and human. I garden with urgency to support native pollinators. I hike and run and do yoga and spin class and cook. Every morning I do 45 minutes of inhaled medications and journaling to keep my mind from spinning out. I do the New York Times Wordle religiously because I imagine it’s keeping me from cognitive decline. I apply my obsessive/compulsion toward avoiding the hospital. Until I can’t.
Until I have to sit my ass down.
I suppose getting knocked on my ass is a better description. The putrid taste in the back of my throat signals that another infection is on the horizon. My lower back aches so deeply I can feel it in my back teeth. I feel hallow, empty except for the gurgling mucus filling my lungs. After a few days, I text my nurse who has been with me for more than twenty years. Our exchanges are short. Punctuated by familiarity. I pour myself into the car and head to the clinic.
The distance between the clinic and the hospital is ten city blocks. The distance mentally is a divergent road of obstacles and emotions - one way relief knowing help is coming soon, the other knowing the help is painful and lonely. The hospital room on the sixth floor respiratory unit has a wooden door that clicks shut and closes off the outside world for two weeks. Fourteen days. 336 hours.
In the outside world, I don’t count days and hours as I fly through life fitted with my other identities of mother, partner, professional, daughter, friend. The exterior of my body is average and provides little clues of my illness. There are scars from the IVs and PICC lines, a few scars from a back surgery, but most of the scars are in my nervous system and emotional command center. No one can see them and I don’t let on. I compensate for my bodies frailties by being more than….stronger than….smarter than…. I don’t fear being ill because illness has afforded me more life than most people get to live, but I don’t like being meek. I enjoy independence and struggle with asking for help.
I don’t put on a false persona in the outside world. It’s really me that people interact with through emails and on calls and as I speak to large conference crowds about my work. But I used to close off my CF side to the world. I stifled my gurgling cough. I stayed out late. I pretended that I lived inside a body that could handle a twelve hour work day and then another. Until I had to sit my ass down. Then, I would close off, shut out the people who didn’t need to know, and click the hospital door closed.
As I watch my hair go grey with immense delight and feel the joy of aging, I realize that the heavy barrier between my double life is not serving me anymore. I’m finding that my friends don’t really know me, my family doesn’t understand me, and I am requiring more accommodations to be a professional because I can’t fake-it-until-I-make-it anymore.
The people who know me, the me who lives with CF, know that I go to the hospital. They text me and ask if I need anything or say “feel better.” But the hospital is only one third of the illness experience. First, there is the falling part. The period of time where the putrid taste rises in my throat and I begin to resist the need to lay down mid-day and cancel a few calls. The four or five days that I struggle until I text my nurse and make my way to the clinic. Then there’s the two weeks in a room on the 6th floor behind the click of the heavy wooden door where I don’t see anyone without a gown or mask due to the risk of further infection, and I don’t see anyone I love except my husband. Well, I take that back. I love my nurses and doctors.
The three to five weeks after the hospital is the most difficult. The perception is that I am out of the hospital, so I must be better. But the fourteen days of IV antibiotics and steroids have some particular effects on my body that make it anything but better. The infection is gone, but I am allergic to most of the antibiotics, so the nausea/anti-naseau medication lingers, my appetite is gone, my pants fall down and my muscle mass that I fight for everyday disintegrates. The steroids reduce the system-wide inflammation, but leave a manic mind in their path. My guts produce a black goo from the medicine to combat constipation, yeast builds in the places that no one wants it, my hair is falling out from the medications and I feel hallowed out internally. I am weak and cranky. This is my “better.”
For the three to five weeks I shuffle through my house, irritable. The only creatures who like to be around me are the dogs and I love being with them because they don’t chew too loudly or ask me how I’m feeling every ten minutes. I begin to ride my spin bike again doing the low impact rides, listening to the instructor affirm that I will get stronger. I meet with my therapist and talk about the frustration of chronic disease. I do my work. I parent and partner. I begin to cook meals again. I sit outside in the sunshine. I go for walks and eventually hikes.
And then I am "better." Back to my baseline of 75%. Until it all happens again.
#CFawarenessmonth #CFirl #chronichealing