A Pair of Lungs, A Few Spoons, and an Elephant–My Life with COPD
Cough. Cough. “I’m so tired and my lungs burn.” “You should go to the doctor,” said my husband. I had no idea that this was the start of the worst thing that’s ever happened to me: The Illness.
A couple of years ago I was your typical 42 year old woman
Except for a lot of stress due to my husband’s Ehlers Danlos Syndrome, I was healthy. I had a job I loved, a husband and wonderful son, a house in the country and a delightful hobby I enjoyed with my friends.
I grew up in a middle class family; we all loved each other and my parents were super. I was intelligent and creative. I loved to travel. In high school I received honors and was accepted to the prestigious Governor’s Honors Program. I went to a great university; it is ranked in the top 20 in the entire nation, according to USA Today. Twelve years ago I landed a job working at home typing for a company based near Los Angeles doing closed captioning for TV shows and movies as well as legal transcription. I’ve typed speeches given by presidents of three countries, including my own. I’ve transcribed international political forums such as the Atlantic Dialogues. I worked on “The Oprah Winfrey Show” and did many jobs for Netflix and NPR Radio. I worked hard and I loved both the job and the company I was with. I never smoked, didn’t drink (much), didn’t do drugs, paid my taxes (albeit begrudgingly), volunteered and organized for my hobby group, and was a Den Leader for my son’s Cub Scout unit. I was, in other words, an upstanding citizen, a paragon of virtue, a righteous dude.
Cough. Cough. “You should go to the doctor.”
I was diagnosed with bronchitis, given antibiotics, and sent home. I didn’t get better so I went back in a week. I was diagnosed with pneumonia, given antibiotics and a steroid, and sent home. A few weeks later, still sick, I went back yet again. This time they took a couple of x-rays of my lungs. “Are you sure you’ve never smoked?” the doctor asked. “Your lungs are inflamed. It looks like you’ve been a heavy smoker for 20 years.” No, I could count on one hand the number of cigarettes I’d consumed.
After a couple of months of more illness and more doctor’s visits, I had a spirometry test and was diagnosed with a type of Chronic Obstructive Pulmonary Disease and sent to a pulmonologist. Through her and through an asthma/allergy specialist, and many, many hospital tests I found out that I have a form of severe asthma, severe allergies, and chronic bronchitis with COPD exacerbations. I was put on three types of medicine and a rescue inhaler. No one knows why I have this disease. It’s not much comfort somehow.
Cut to now, 2015, and my life is drastically different. I am on over a dozen medications. I couldn’t return as Den Leader to the Cub Scouts. My hobby group holds events almost every week; the last one I went to was two years ago. After it I was bedridden for five weeks. I can no longer participate or volunteer or be involved in helping the group anymore. I can’t garden or plant flowers or walk in the woods. I can’t work, and that brings up a whole other problem of income, an issue for another post. I can’t cook, can’t clean house, can’t drive or run errands anymore. I can’t walk more than 20 feet without having to sit down and rest. I have to use a walker and I’m looking forward to being able to have a wheelchair and an electric scooter to get around better. I can’t travel. I can’t dance, can’t sing (well, not that I could when I was healthy), can’t laugh too much, and can’t hold long conversations. On one of my good days I’m awake for only seven hours total.
I feel useless.
I feel lonely.
You might have wondered about the title of this article. By now you get the “pair of lungs” part.
A Few Spoons:
An online article by Christine Miserandino described the Spoon Theory. In it she described chronic illness and the lack of energy as having a handful of spoons. For each action you did during the day, such as taking a shower, you used up a unit of energy – or a spoon. And when you were out of spoons, you were out of energy for anything more. On good days I have three spoons to do small tasks such as bathing or dressing or making a meal or walking out to the yard to take pictures. That is it. Three. Spoons.
There’s a commercial for a COPD medication that compares the disease to having an elephant sit on one’s chest. Yes. I always feel like that. Or in other words, I’ve been the victim of a horrible fashion experiment gone wrong and now wear an iron corset two sizes too small–and it can never come off.
You may have a small glimpse into my illness.
And yet–and yet life isn’t completely miserable. A whole new world has opened up to me. I’ve discovered nature like I hadn’t before. I can sit at my desk which is at a window looking into a small grove with a huge shade tree, carpeted in the spring with violets. My husband hung up a bird feeder and now I watch the birds that visit the grove. They are beautiful and fascinating. At the bottom of the tree there is a hollow where the chipmunks and a grumpy squirrel live. There is also a resident rabbit and a visiting turtle. Watching them has become a joy.
I’ve rediscovered photography which is a huge happiness in my life.
I enjoy taking pictures of all the birds and creatures in my grove. I especially love macro photography, sharing the wondrous beauty of flowers and plants and creatures so small anyone barely notices them. I found this world because I can only walk a few feet in the yard before I have to sit on the ground and rest. Turns out, that’s where the tiny creatures live.
I have time to read. I’m enjoying every minute of rereading comfort books, and revisiting characters like old friends that live in the yellowing pages, too many to name. I am discovering bygone eras like the gritty adventures of Sam Spade and Philip Marlowe. I’m starting to map unfamiliar territory such as Goethe, Aristotle, and Dante.
I will continue writing about specifics like my limited life, loneliness, poverty, and depression even though it’s difficult to let the world in on how well I’m NOT doing anymore, how utterly sick and broken I am. How my upstanding citizen and righteous dude cards have been cancelled.
I will also continue writing about the new beauty of my life and my family. I will continue writing about my triumphs. And I will continue to hope.