“Hi, my name’s Clayton and I’m calling about the CF support group.” He says, after I pick up the phone, breathless from vacuuming.
“Oh great, yes, well, you’re the first person to call. Great.” I respond.
“So, how old are you?” This question is OK in CF land.
“I’m 25. How old are you?”
“I’m 37.” He says.
“Wow. That’s great, how’s your health?” I ask.
“I’m on oxygen but I’m not on the transplant list yet. I don’t get out much.” He says.
“Well, I’m not sure how this is going to work, but, do you want to get together, just for coffee or something?” I ask.
“Are you cepacia positive?” He asks.
“I don’t know, what is it?”
“Well, if you don’t know then you probably don’t have it. It’s a nasty bacterium that I can’t catch from anyone right now, in case I have to get on the transplant list. They won’t transplant cepacia positive people.”
“I’ll ask my doctor. I don’t even know, sorry.”
“Yeah, ask your doctor and then we’ll get together if you aren’t cepacia positive.”
Foolishly, shamefully, I realize I don’t even know about these bacteria. What’s he talking about? Do I have it? Will I get it? Is it killing me? I phone my doctor and ask him and he tells me that I don’t have it. There are three main bacteria that CF people grow in the lungs:
PSEUDOMONAS AERUGINOSA [phonetic]: Is the epitome of an opportunistic pathogen of humans. It almost never infects uncompromised tissues yet there is hardly any tissue that it cannot affect, of the tissue defenses are compromised in some manner. The bacteria are common inhabitants of soil and water.
BURKHOLDERIA CEPACIA [phonetic]: A bacteria whose natural habitants are river sediments and the moist area of soil around the roots of plants. Has an uncanny ability to survive in hostile environments. Cepacia syndrome is a very abrupt deterioration with sever disease and even death occurring within several months of acquisition. This type of unexpected deterioration which sometimes involves spread of Burkholderia cepacia into the patient's bloodstream causes rapid fatal deterioration within months.
They all grow in our lungs and cause the infections. Some of them you can get rid of with antibiotics. But cepacia is nasty. It’s resistant to many different antibiotics and sometimes, once you have it, it can cause quick and fatal decline. They call it Cepacia Syndrome. People without CF can grow it too but it doesn’t affect them; and a CF person can transmit it to non-CF people without any effect on them. But cross-infections in the CF population are a no-no.
Slowly but surely cepacia begins to take over the CF community. Summer camp, cancelled, too many chances of transmission (don’t sleep in the same room without ventilation, don’t share medical equipment especially face masks, don’t exchange saliva); national meetings of the foundation segregated, with cepacia at one table, non cepacia at another table; then eventually cepacia positive people banned entirely “as per the new policy.” At the international CF meetings, cepacia positive people are banned from attending (they have to show up with a lab test taken within 15 days of the meeting proving that you are cepacia free or you will not be allowed to enter).
You are told not to touch each other, remember to wash your hands after you cough, remember to cough into a Kleenex and then put the Kleenex in the paper bag provided at meetings, remember to use antibacterial hand wash if possible. Meetings now held half in person, half by conference call so the cepacia positive people can participate. Err on the side of caution; make sure that everyone is safe.
Luvies and I go to Clayton’s house, after we establish that I am cepacia negative. He has a big screen TV (like a mini movie theatre) and a big stereo and his hard-working nurse wife is there and he’s sucking on oxygen and we watch a Bruce Willis movie and my nerves are shot.
I know I should be relaxing, enjoying the visit, the fruit juice and homemade cookies but my heart is racing, my thoughts are exploding.
Is that what it will be like for me? On oxygen 24 hours a day?
How does his wife feel right now?
How long will he live?
Does he go out of the house with oxygen on? I wouldn’t.
What did he do before all this?
Is he depressed?
Is this freaking Luvies out, seeing a guy with CF like this?
Does he hate me because I’m healthy?
Is this my fate, then, have I looked it in the face?
It’s a polite visit. There is no spark. Clayton’s old compared to us. Clayton’s closer to dying compared to us. There is no spark. We don’t choose the same movies. We can’t go hiking together.
Months later, I am a busy volunteer. I’m the Publicity Chair for the local CF chapter but I’m also Western Canadian Regional Representative for CF adults on the national CF adult committee, part of the Canadian CF Foundation. I’m attending Annual General Meetings all over Canada—places like Toronto, Halifax, Winnipeg. My job is to tell the foundation what concerns CF adults in my region so that as a national committee with a newsletter for CF adults and with three yearly meetings and with the guidance of the foundation, as a committee we can fight for what CF adults need. We can write letters to the government, make presentations to health care professionals, share our stories with the CF community. I’m an advocate now. I am known as “someone to speak to” if there is a problem.
For my first meeting as Regional Rep I conduct a survey. I want to impress the committee members, to let them know that they made the right choice when they selected me for the position, in competition with others.
I carefully prepare survey questions and set out the results in Excel with a lovely pie chart about what concerns CF adults in my region most. I send the questions out by mail and I make some phone calls.
Eventually I call Clayton to ask him, and I hear a faint, tired, raspy hello and I say, “Hi Clayton, how are you?”
“OK.” Faint, tired, raspy.
“I’m calling to find out what you’re most concerned about as a CF adult in BC so that I can present these concerns to the Canadian Cystic Fibrosis Foundation at the next meeting. Do you have a moment?”
“How are your lungs?”
“Oh, sorry to bother you.” And I hang up.
Just like that. Cowardly bitch. I hanged up on Clayton, dying Clayton, maybe he died that day, maybe he died knowing that I hanged up on him ‘cause I couldn’t handle hearing his faint, raspy, tired voice talking about his poor lungs.
Because I felt ashamed that I called him to ask him about a fucking survey when he was dying. What the fuck are you concerned about Clayton? Could it be your impending death, leaving behind your wife and the house, and your parents and your friends and all the dreams you thought about, and all the hopes you had? I’ll put 80% for hope in the pie chart and 20% for dreams and then that’ll be that ‘because the pie chart is full so you can’t have any other concerns, ok?
If I had it to do over again, I would have said, “Clayton, God, I’m really sorry that you’re not doing so well and I really wish I could do something, is there anything that I can do? Can I come over and sit with you, read to you, put in a Bruce Willis video for you, help your wife pick up the groceries? What the fuck can I do for you?”
Collette’s the other person who responded to my request for a Circle of Chattering Cystics support group. Two people. We’re a quiet bunch, we CF adults. Collette and I are fast friends—lunches, walks, phone calls. But there’s always a tension between us. Between the healthy one and the not-so-healthy one. I feel ashamed that I’m so healthy and imagine her feeling jealous of me for being this way. I shrink away from her sometimes, thinking that maybe my energy drains her of her own—depresses her, reminds her of “what could have been.” I shrink away from her and try to pretend I know how she feels but that’s dishonest because I don’t. And being dishonest is worse than being in denial.
Colette is my first CF adult friend to go into the hospital. The day I visit her there it’s a sunny day—warm autumn breezes blow over still silvery-green leaves. I have never visited a friend in the hospital before. I’ve visited my Daddy and my relatives, but never a friend. Friends aren’t usually in the hospital. Friends are young and healthy and unless they’ve broken a leg they spend very little time ‘inside.’ But I am here because I had called and left her a message about getting together and she called to tell me that she was in the hospital, not doing so well.
I come armed with cookies and a paperback, hoping to provide some joy to this joyless place. A hospital is a place of trouble. Yes, there’s hope and miracles, but generally it’s a place of trouble. I sense this trouble when I walk on the floor. How many people are dying? How many people are not going to make it to the next day? Who just died, right now? And now?
Colette’s father has arrived from England. Had I known then what I know now I would have known that this was bad news in itself. She warned me that he is an old-fashioned; wear your school uniform type with a yearning for arguments. He believes that employers should hire the best-dressed person, not necessarily the person with the most qualifications. He believes in things like women not working and children only speaking when they’re spoken to.
She looks a little pale, but no worse than anyone else with a ‘flu.’ She’s sitting up, not particularly short of breath and engaged in conversation with us both. There isn’t much I can do to make her feel better though, aside from saying ‘well, I’m sure you’ll be out of here soon’ and passing her a cookie. I don’t remember what her father said, but I challenged him on something and we sparred a little, lightly, I think I did it mostly for Colette—thinking that if she had enough energy she would have sparred too.
Our visit doesn’t last too long, partly because I didn’t want to bother her too much and partly because I didn’t want to spend too much time with her father. While I’m leaving I promise her that I’ll visit again. I’m glad that I went, despite how much I didn’t want to visit the hospital. How much I didn’t want to see what my fate held for me. How much I didn’t want to think that Colette might not leave the hospital this time.
Before long, she calls to tell me not to visit again—that she’s really tired and she’ll call me when she gets out. So I am released from the duty of visiting a friend in the hospital, sick with CF. I am released from the boredom of sitting in that room, with dull colours and antiseptic smells. I am free to continue to try to believe that none of this will happen to me.
Had I known then what I know now I would have known that when Colette asked me not to come to visit her again, she was asking me to say goodbye.
So I stay away, for her sake. And I stay away, for my sake too I’m sure. I pity her and I feel ashamed to admit that. And she tells me not to bother visiting her in the hospital, it’s OK, she’d rather just be alone and I understand and respect her request.
I found out she died from her landlord. Luvies and I were looking for a two-bedroom apartment, with reasonable rent, in a clean and secure building. We found it in the same apartment building as Collette’s. I knew as soon as we went for the open house that it was her building. As we were shown the new tile, new carpet and spacious dining area I said that I knew someone who lived in this building, Collette. The landlord paused and clearly uncomfortable with his task, told me that Collette had died last week. That her father was staying in the apartment right now, settling things. Collette had died last week from the same Disease that I have I almost said but this isn’t about me, this is about Collette dying last week.
And I wonder about the etiquette of dying. Is there an appropriate word to say, sound to make, movement to express? How comfortable can the dying make it for the rest of us, while still fighting, while still resting, while still doing what it is they need to do?
And I wonder what it might have been like for Collette to selfishly ask people not to visit her; because she knew she was dying, because she was too tired to deal with other people’s reactions to her condition, because she wanted to save all her energy for the fight or because she wanted to give up and didn’t want to admit it or defend that decision.
Or what was it like for Collette to unselfishly ask people to stay away because she thought it was the right thing for the sake of other people but really she wanted everyone there, crying, holding her, stroking her face and singing her to sleep.
What was it like for her to ask so much of herself, either way?
Armed with my Excel spreadsheet filled with CF adult concerns in Western Canada we need more drug coverage, we need to have our travel costs paid, we need to continue to research the genetic puzzle I attend the meeting and show everyone what I’ve discovered and we talk about how the concerns are much the same throughout the country and that we’re willing and able to help with some of these.
I sit at the table and realize that many people I know aren’t physically at the meeting because they have to participate by phone. They are cepacia positive and the policy does not allow them to attend in person.
I miss my cepacia positive friends. I tire of policy. I want to hug them. I don’t care. The bacteria will get me either way, who cares. But I need to think of my family. I need to think of my health. I need to be safe. In a bubble, then? Away from colds and flu and ringworm and TB and dirty snot from a sneeze, filthy dust from an old book, stinky cigarette smoke from a bar. Safe.
I hate having the luxury of moving freely in the CF world because of my ‘status’ and feel guilty for being cepacia negative. Missing those who are positive. But I’m safe. And that, at the end of the day, is all I can accomplish for now I suppose.
At this meeting I am armed with spreadsheets and my business suit because I know I can’t offer any firsthand experience. I armed with business tools to make up for my real life inadequacies. I know I can’t share firsthand how expensive my medication is—I don’t have any other than the government-covered Cotazyms. I know I can’t share firsthand about the quality of care in the hospital, because I’ve never been in the hospital since the Diagnosis.
I know I can’t share firsthand about the difficulty of finding work or going to school because I’ve been there, done that. I’m the lawyer in the Erin Brokovich movie, with the fancy shoes and the nice haircut but no real empathy to offer. I’m out of place in time when I can’t empathize.
When I can’t be honest about something then I’m not exactly sure what do with me. And I can’t be honest about living with CF right now because that would disqualify me from the committee. And I need this. I need this for all the right reasons and for some wrong ones too. So I take on the role of messenger, conduit, the one who will get the word out and in and that has to do for now. And in the next few years I will lay off the spreadsheets and up the stories, from real life CF adults, with real life CF adult problems, and I learn about a quality that comes easily to me as I grow older. I learn about empathizing with someone, imagining and then feeling what it’s like to be in their shoes for a moment. It comes easily to me as I grow older, to see their side of the story, to see the other side of the story itself and still feel for everyone involved.
I am rewarded in selfish and shallow ways for my volunteer work. I am sent from Victoria to Toronto, Montreal, Halifax and Winnipeg. I am sent to represent CF adults in Canada at international CF meetings in Germany and Italy and I am honoured. I am again a messenger, a conduit, and it does make me happy, it is something I am good at, it is my place in all of this.
In Berlin, Germany, after years of serving on the Canadian committee, I walk into the international meeting feeling like a CF virgin all over again. Now I see CF adults from all over the world—knowing, physically, more than I’ll ever know about CF. CF adults with no medical teams to look after them, no government that provides medications for free or even with assistance. No support networks, Internet chat groups, chances for transplant.
I am quiet. Humbled and quiet. Ashamed.
Feeling like I did the first day of Camp Couchiching. On the fence. Sort of belonging, but not really let’s be honest.
You’re healthy and you are lucky but to be extremely honest you haven’t had to see the ugly side of this disease and have all the bad days that usually outweigh the good ones, which puts you at somewhat of a disadvantage.
A co-CF Adult Committee member writes in her email to the whole committee but is addressed to me.
Accusation: let’s face it; you don’t really know what it’s like to have CF.
I’m at work, in my pod, with my pod-mates, our desks in a circle, just enough room to get around in it, waiting to move to the bigger office space. I’ve only been at this job for a few months and I’m pretty sure they don’t know. I know they hear me constantly clear my throat. It’s like a library in this place. Every time I clear it, I’m waiting for the “have you got a cold?” question or the “oh, that sounds bad” comment but it hasn’t happened yet. I clear it when I get on the phone, during the phone conversation, after the conversation, after I have a glass of water, when someone comes over to talk to me, after they leave. I feel the entire staff listening to me clear my throat and I hear all their questions in my head, “what’s that about, why can’t she stop doing that, doesn’t she know that’s annoying, what’s wrong with her?”
This time, after I read this email from my CF adult co-committee member I am in a bigger danger. I am in danger of crying. My heart races and my palms sweat. I’ve been found out. She figured it out and she’s only saying what everyone is thinking. That I don’t belong on the CF Adult Committee, that I have no right to talk about having CF because I’ve never even been in the hospital for God’s sake, except for the Diagnosis. I don’t even have a G-tube and I’ve never had a lung bleed or a lung collapse.
I am in danger of crying because now I don’t belong anymore. Now I know that I’m in this strange middle place where I’m not quite sick enough to get it but not quite healthy enough not to worry about what all my coworkers think when I clear my throat a hundred times a day.
I’ve always known this, since summer camp especially. I’ve always realized that I cannot begin to understand the many ways to suffer with CF. I cannot begin to expect anyone to feel sorry for me or to want me to be cured over the little girl who can’t breathe at age four. I’m the last person who needs a cure for CF.
But I want one anyway. I want one for all the other people. So I don’t have to say goodbye to friends, watch fathers die when their sons are only two years old, watch mothers-to-be miscarry and then die waiting for a lung transplant.
I respond to this email, explaining that yes, I know that I cannot begin to know what she suffers, that I can only know what I learn from others and I can do a good job representing my country in the CF community because I am so healthy and have so much energy. Secretly I wish I could tell her that she’s a lousy cunt bitch who needs psychiatric help because she basically just wished that I was dead. I tell the committee, openly, that they need to tell me if they feel that I am not doing my job, that I am trying to do my best and that I really want to measure up.
And the troops rally, just as I had hoped but had worried that they wouldn’t and I am defended.
Uncategorically, Debra has been a very dedicated member of our committee and nobody can dispute that. And yes, some of us are healthier than you are but we still have CF and have issues that pertain to CF that perhaps are different than yours. That doesn’t make us any less or more of a representative than you might be. None of us has it easy and you don’t have the right to begrudge anyone their health. We all have to deal the cards we’re dealt.
And then I read my other co-committee’s response and my heart is warm and my head clears and the rejection, sadness and fear are replaced by indignation, moral superiority and anger. Back to myself, again. Back to being someone with not-very-severe CF, safe in that knowledge, welcome in that community, feeling sad that it’s true.