There is no medication or surgery or therapy for this; the only treatment is to provide oxygen artificially from an external source. This means that I must rely on a large device called a concentrator, which transmits oxygen through a plastic tether inserted in the nostrils.
At home, I have a long tether which permits me to move around the house, even though it constantly becomes caught under doors or around chair legs. When I leave the house, I carry a small canister that has a short tether and contains a limited amount of oxygen.
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These arrangements are not painful or difficult, but they are complicated, annoying, uncomfortable and intrusive. The long indoor tether permits freedom of motion at home but also limits the extent of that motion; the outdoor tether permits me to leave the house but limits the length of time I can do that.
The doctor has advised that I can be without the oxygen if I'm sitting quietly at home, but it's precisely when I'm quietly at home that I'm the least bothered by wearing the oxygen. It's when I'm out in other places with other people around that I'm the most bothered!
But the greatest effect for me was that it was so image-changing. What people now saw was not me, but the fact that I wear oxygen. In fact, for the first few months, I was reluctant to go out in public places except when necessary, and there are several incidents I still remember.
There was the little girl in the store who kept staring at me, and finally asked her mother in a shrill little voice, "Why is that lady wearing that funny thing on her face?"
There were the curious adults who assumed that my problem was caused by emphysema from past smoking, that I had caused my own difficulties.
And then there were those who carefully avoided looking at my face as if they weren't noticing anything at all. Even when they were solicitous with offers of help, I felt as if they were relating to some strange person, not to me.
Even friends seemed to see me differently, with more caution and less comfort. I wanted, but didn't know how, to convince them that I was still myself -- but perhaps it was myself I was really wanting to convince.
Then I had an experience with a friend that was the most important of all. We were discussing a movie we had just seen and about which we disagreed. In the midst of her remarks, she stopped suddenly and asked with some surprise, "Where's your oxygen?"
I was even more surprised by the question because I was wearing the oxygen as I usually did. I told her, "I've got it on, of course."
Then she looked at me more closely, laughed a little in embarrassment, and explained, "I guess I just didn't notice it."
At that, I laughed too, and said "thank you" -- although I'm not sure she understood what I was thanking her for.
Lillian Hawthorne is a retired clinical social worker and emeritus faculty member of the School of Social Work at USC. She lives in Leisure Village, a retirement community in Camarillo.
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