- How to Tell a Child about CF
- How Much Protection Should I Give My CFer?
- “Listen to the Mustn’ts”
- Upon Receiving the CF Diagnosis
- Welcome to Holland
- A Poem By a CFer on Coping
- “You’re So Lucky To Have A Mild Case”(5/97)
- To Parents From an Adult With CF (5/97)
- To Young People From an Adult With CF (5/97)
- Life as a CF Spouse (5/97)
- Living With CF by Kim Payne (11/97)
- “When Illness Is a Secret” (5/97)
How to Tell a Child about CF
For parents: Parents should be positive in their words, body language and emotions in the presence of their child(ren). The child will initially benefit from the diagnosis in that whatever uncomfortable symptoms led to it (stomach aches, uncontrollable coughing) will now get better because the doctors know what to give him. When it comes to doing all the “stuff”, it’s a hassle, but it won’t last forever as a cure is on the horizon.
Do not bring up the word fatality in his presence for there is no need to deal with that now. He will have an instinctive knowledge about that anyway and there will come the day when he’ll know that someone died of CF. That will be the time to talk about it and then it need not be negative. If possible let the child get in touch with someone who is dealing with CF so that they can see how “normal” they are. Some advise honesty and spending time at summer camp; one remembers “We were pretty good at sorting ourselves out and talking amongst ourselves about the scariest parts of the disease when no adults were around…the counselors tried to insulate us …but I can remember as a child needing to know as much information as possible…As a parent I would educate myself in order to be prepared to answer questions about the mechanics of the disease. My mother at one particularly inquisitive stage kept a question jar in which I could ask questions and then remember them at clinic. My parents made the health care my responsibility. By informing me, they involved me in decisions about my care. By inviting me to question the treatments I was prescribed and by teaching me to be attentive to my body’s responses to treatment the CF became manageable in my eyes”.
A parent said if his kids asked questions he “tried to be accurate but brief and at the level they could understand…a kid wants a simple answer and parents too often over answer the questions which just confuses the child. On the prognosis, I didn’t say anything. I knew that they’d figure that all by themselves as they went along and I could deal with it as they realized more.”
Another said “I would say to tell them as much as they feel he can understand. Kids generally worry if they aren’t told and imagine the WORST. Just remember, he is the same kid he was before. You just know more about him now.”
Another said “… Ya have to remember too that our children are exceptional children. I have never met a CF kid that didn’t have an insight that “normal” people just don’t have. I am not sure what it is…but they have it! They also have the sensitivity and sweetness that goes with it … All of you with newly diagnosed babies and kids … love them … and hold them and comfort them. They aren’t the only special ones in the families … we the caretakers are too!!! The way I explained it to (my child) (diagnosed at age 7 based on repeated lung problems) was that the mucus acted kind of like a spider web and germs were like the flies. Mucus traps the germs and therefore he gets sick. So in order to rid his body of the mucus and all of that gunk he’s trapped, he must breathe in his medicines and then we pat (okay, pound) the rest out so he can cough it all up. This seemed to work for him at first but then he wanted to know about getting rid of the dirt so we used an analogy of a garbage truck carting stuff to the dumps. After that he seemed satisfied that he knew as much as he could understand about it. I also arranged an appointment with the regular pediatrician so that (my child) could ask any questions he wanted. The purpose was to assure (my child) that I was being as honest and open with him as I could be. The doctor had no idea of what I had told him and was caught off guard (planned) and (my child) asked how he got it (the doctor explained simply that it was genetic and like getting hair or eye color); could mommy or daddy catch it, and if he would ever get better. The answer to the last was that he will always have cystic fibrosis as long as he lives. This does not allude to the fatality of the disease but neither promises a cure (yet). Those whose children have digestive problems may need to find similar analogies but digestive problems are discussed in the booklet “THIS IS PAUL (an introduction to cystic fibrosis for children age five and older)” by Kirsten Webster Griebel. The booklet is provided as a service to patients and their families by McNeil Pharmaceutical. Editorially, I found this to be a bit complex for a 7 year old and would question it for those younger.”
How Much Protection Should I Give My CFer?
You fall, I catch you. You fall again, I catch you–but I wonder why you fell again. You fall again, I catch you–but I help you understand why you’re falling. You fall again, I catch you–but I then insist on “fall-prevention” devices. You fall again, I catch you–and realize that catching you is undermining the “fall-prevention”. You fall again, no catch. Do you continue to fall?
“Listen to the Mustn’ts”
by Shel Silverstein
Listen to the mustn’ts, child, Listen to the don’ts Listen to the shouldn’ts The impossibles, the won’ts Listen to the never haves Then listen close to me- Anything can happen, child,
Anything can be
Upon Receiving the CF Diagnosis
One thing that struck me when reading both of your posts, was the true phenomenom of “been there – done that.”
As (our PWCF) approaches his 17th birthday – how odd it seems that just about 13 years ago we were experiencing the same thoughts and emotions you both seem to be projecting. The “Where did this come from? Why wasn’t he diagnosed sooner? Will he make it? What’s his future? What about my other child? Future children? Is my faith being tested? What, when, where, why, who, how?!?!
I believe that in the stages immediately following a diagnosis of CF – that all of us parents (regardless of how old our child was at diagnosis – either at birth or 45!) have taken similar strolls through the valley of the damned; thinking similar thoughts – feeling at times lost, alone, scared, isolated… disjointed and different now from our circle of friends whose children were “normal and healthy.”
I believe a child is a blessing – but having CF is not…
I believe what you do with your life after diagnosis can make you a person whom people bless for knowing you.
As I’ve sat back – and also participated in – the topics on the List since joining in November ’95… the most important common denominator that has become apparent is NOT that CF has brought us all together… But that having CF, or having a child or loved one with CF, enabled us to become a person altogther different than who we might be without CF in our lives. Family and friends tell me (among other things!) that I’m the most empathetic, forgiving, AND medically knowledgeable person they know… And this is what I’ve witnessed about the rest of you too.
Are these then the traits of “the blessed?” (Or a part of “the blessing?”). When CF is projected into your world – you slowly – day by day – begin to awaken from this painful, confusing fog and see the world through new eyes… This diagnosis of CF has definitely made me more focused as to what is really important in life; has enabled me to become stronger, more self-reliant, more confident, more knowledgeable about many things that *ordinary* folks don’t know about… but should.
So – take heart… With grace you’ll survive these initial stages of uncertainty – and yes, you’ll experience set backs and scares along the way… But we’re all here going through this together… and we’re very glad you’re here to help us too… For your *newness* reminds us just how far the rest of us have come.
Welcome to Holland
Your letter (refering to the above) brought back old familiar feelings to me, too. I used to wonder how anyone with a child with a terminal illness could possibly live with that knowledge. Then when we were in that position, a light came on. LIFE is a termiinal illness and the only time we really have is NOW. We have six grandsons. Two of them have cystic fibrosis. Who knows what the other four have in their future? Or what they have right now that we don’t know about. We just live from day to day expecting good things.
A friend gave this to me when (our child) was diagnosed. I treasure it and have passed it along to so many others for various reasons. Here it is for anyone who might want to copy it down. Hope it helps someone.
Welcome to Holland by Emily Pearl Kingsley
I sm often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say, “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
A Poem By a CFer on Coping
MY PUZZLE By Tana Lee Benedictson
Where does one begin you show off your best features To shadow those that are less desirable We wish we were perfect How boring that would be No challenges to overcome What I lack in my lungs I make up for in my heart Can anyone see the love I have to offer Accept my package as it is Do I go about it wrong Is my gift wrap to good to be true Making the inevitable truth that much harder I don’t want to cause anyone pain Being unwrapped and as the pieces are put together I find myself under the tree When those pieces don’t seem to fit so well When will that special person come along And find all my pieces just right?
One begins by looking from within All features are beautiful making one unique What we must understand No one can offer a guarantee of life But instead a lifetime guarantee We must live each day to its fullest There is nothing wrong with the pieces of my puzzle They fit together beautifully When that special person comes along The qualities I posses will shine And we will embark on the wonderful Journey of life together
— Submitted by Brent Dufresne
Brent writes “I knew Tana since I was 3 years old. Tana wrote this Poem before she passed away on April 19, 1996 at 28 years of age. Tana was a very positive and outgoing young lady, and lived everyday to it’s fullest, she was always there to listen, and take the time to make just that little bit of difference. Tana was in the progress of getting online to CYSTIC-L; she had bought a computer, etc … as I was telling her how interesting the list is, and how many “Great” people that were on it. She was very excited, but took sick and never did get a chance to meet you all.”
“You’re So Lucky To Have A Mild Case”(5/97)
I hated to be told by some doctor or friend how lucky I was to have a “mild” case of CF. These folks that told me how “lucky” I was did mean well. So, if they seemed receptive, I would tell them a little story to set them straight:
I and many of my friends are stuck in this huge lake of slimy sh-t. Some of my friends are in up to their knees. Others are up to their waists and some are up to their necks. Others have drowned. I can’t hang on to my friends or help them and the lake is constantly rising. You, doctor or friend, are standing on the dock looking down at us and telling those of us who are currently only ankle deep how “lucky” we are …… please understand our different perspective.
To Parents From an Adult With CF (5/97)
I have wanted to write this for a long time, and didn’t know how to do it without hurting anyone’s feelings, but I am going to jump in anyhow, I apologize for any hurts I cause.
I think it is important for all parents to remember that your children are children first. CF is just one small part that makes up the whole. When I speak to Nursing School Classes, I explain it this way….
“Hello, I am (name of person with CF), I am 26 years old, have blonde (it’s brownish now!) hair, blue eyes. I also have long legs, work at a golf course, love country music and men in Wranglers. I also happen to have Cystic Fibrosis. Please note that CF was not at the top of my list, it is not my life! It is a part of me, one of the many parts that make me Shannon. Even when I spend 6 hours a day on treatments, and use O2 at night, CF is not my life! I am a normal 26 year old, with all the wants that you all have, the fact that I have a chronic disease does not make me a worse person, nor does it make me a better one. I am likely pretty close to have I would have turned out if my DNA were different. Please don’t look at me, even when I am in a hospital bed, deathly ill and see “CF”, look at me and see (name of person with CF)!”
That usualy makes everyone stop and think. Even now, when I am on oxygen 24 hours, I do home IVs every two weeks, I am unable to walk much more than 25 feet, CF IS NOT MY LIFE!!!! Parents please remember that when you are raising your CWCF, it is vitally important that they are raised knowing that CF is just a part of them, not their whole being. I think that when we get over focused on keeping our children out of harms way, that we almost do them a disservice by not allowing them to be kids. It is vital to a child that their whole identity not be wrapped up in a disease, what kind of self esteem can grow if the other thing you have to offer is a chronic disease? Please do the best you can (and I know it is hard), to let your children be children. Let them walk in the puddles, and play in mud puddles. Let them lose their rubber boots in the mud…..let them “hang out” and run around with the neighbor kids. A cold is not going to kill an otherwise healthy child with CF. (Yes – notice I use the word healthy!) Children with CF are generally healthy unless they are having a chest exacerbation. I am offended when people talk about their CWCF, and their “healthy” child. I often refer to the classes I talk to as “normal” which I laugh about! Please, I know this will hurt some feelings – I am sorry for that, but even so – I hope it gets you thinking!
To Young People From an Adult With CF (5/97)
Wow! I remember when I was 10 and all I wanted to do was Play! But I’ll tell you what. I’m a whole lot older than you and I still don’t like doing therapy. But I do it. You know why? Because I have to do it in order to feel better. When I was 10 there were a lot of things I hated to do. Homework – that turned me off. Brushing my teeth – my mom was always telling me to brush my teeth! Cleaning my room, doing my chores, the list goes on and on. And you know what? Today I’m in my 40’s and there are stil lthings I don’t like to do. Like cooking! I don’t like cooking, BUT, I like to eat, so I cook.
I know from your standpoint doing therapy doesn’t seem too interesting or fun, but if you just do it it will keep you healthy. And no one can keep you healthy except YOU! Don’t wait to get really sick before you learn that it’s absolutely necessary to do your therapy treatments. That’s a real bummer. It’s better to be preventive and keep yourself in good health.
So, the bottom line is since you have to do therapy, what can you do to make it more interesting? Well, I do all my reading when I do my breathing treatments. So, you can either read a good book, a school book, or homework assignment while you breath in your meds and get two things done at once! Asfor percussion, well, there’s not a lot you can do while doing percussion, however it does make me feel better in and by itself. But the one thing that makes it easier to do (at least for me) is telling myself that the sooner I do it, the sooner it’ll be over.
Do you ever get used to doing therapy? Believe it or not, yes, you do. It becomes part of your routine, just like brushing your teeth. I don’t know about you, but I don’t love brushing teeth but I do it every day because it keeps them in good shape and I still have friends. Imagine if you didn’t brush your teeth! Whew!
Imagine if you didn’t do your treatments. You sound like you’re pretty healthy, so stay healthy! Change your attitude. I know it’s hard, but we’ve all been there, and it’s not thaaaat bad! What’s bad is when you neglect yourself and then your health gets worse! Don’t let that happen to you. Take Charge! You have a long life ahead of you and staying healthy is the most important part. Only you can do it. Just do it!
Life as a CF Spouse (5/97)
by Todd Hamilton (amended May, 1997)
I am going to share with you a description of my 8 years as a CF spouse. I had absolutely no idea what Cystic Fibrosis was until I met my future wife. Denise Michelle Nadon was 21 years old when we first met in the fall of ’85. She was about 5’6″, 120 lbs, long brown hair and brown eyes. We were both employed as disc jockeys with Tunes Disc Jockey Service. Boy, did she have a set of lungs on her back then! She was just finishing her Bachelor of Visual Arts degree at the University of Windsor and had an amazing talent for art! Many of her works of art grace my home. Anyway, we had known each other for about 6 months before the time came to get to know each other better. Keep in mind that no one at work knew Denise had CF. She didn’t want anyone to treat her differently! I remember that I was working at a bar one night and Den came in with her cousin Christine to cheer me up, because I’d just broken up with my girlfriend the night before and was feeling a little down. After finishing work we ended up going back to Den’s place for a nightcap. Christine left and that left just Den and I, ALONE! This is where the plot thickens! After a couple more hours of talking, something happened, that to this day still amazes me! Denise propositioned me!!! Now if you knew Denise, you’d know how completely out of character that was for her to do! It gets even funnier! My response was, ” don’t you think we should go out or something first?”. I was a 19 year old red blooded male and you just don’t turn down something like that! Unless of course there’s something special there. Little did I know just how special it would be.
After about 2 days of seeing each other, Den decided the time was right. We were sitting on the couch, snuggling and watching T.V. She said, ” there’s something I think you should know about me”. Upon asking “what’s that?” she replied,” I have a really serious lung disease. I could live for 30 years or I could drop dead tomorrow”. EXACT WORDS! Then she said,”I’ll understand if you want to stop this right now”. I thought about it for, oh , say about 5 seconds and I said, ” no ,I don’t want to stop this! It doesn’t matter to me”. The impact those words would have on my life would be enormous, but I was happy and I didn’t care. I then remember telling my parents about Den and her having CF. My mom’s first response was, “Are you sure you want to get involved with someone like that?”. I couldn’t believe she said that but I realize that she was just trying to be protective of me. They told me that if that’s what I wanted, I was old enough to make that decision. This in no way affected their feelings for Denise. They loved her like a daughter from the beginning. It was kind of cute when we would be at their house and Den would have a cough attack and my mom would always ask if she needed a drink and if she would be OK. Other than that, they really didn’t make a big deal about it, and they were always there for us if we needed anything.
Things seemed to be going well between the two of us, then about a month into our relationship, Denise said that she was breaking up with me. She was afraid of getting into another long relationship like the one before she met me. She was in her previous relationship for 5 years and he promised to marry her. Well, to make a long story short, he treated her like dirt. Den finally decided to call it quits. It terrified her to think that this could happen again. So to guard against this, she told me she was breaking up with me. Needless to say, I went into a tailspin. I was a mess. I lost about 30 pounds in 3 weeks. I wasn’t eating anything. My parents were getting worried about me, especially my mom. My mom was upset at the fact that Den was treating me like this. After numerous visits, phone calls and letters from me, we began to see each other again. We talked and talked and talked some more. Den realized that I really did love her, and I wasn’t just putting on an act. Things returned to normal fairly quickly.
For the first little while we were together, Den and I were working on the road, DJing on weekends. After a few months of seeing each other, we decided to move in together. The weekend work thing just wasn’t paying the bills, so I quit Tunes DJ Service and went out into the world for a real job! Mind you I was only 19 years old and Den was 21. I began working as an electrical apprentice while Den moved up to being the Office Manager of Tunes. We were very good friends with Paul Kowtiuk, the owner of the DJ service, so Den could basically make her own hours. Paul was very understanding about her CF. If she woke up in the morning and didn’t feel well enough to come in, it wasn’t a problem with him. If she had to go into the hospital, her job was always there for her when she got out.
Over the next few years we’d seen a few of our CF friends pass away, which was not easy for me. Each time, I saw Den’s face in that bed. Still I remained optimistic about HER chances to be CURED. The reason being , we were in love and love conquers all, right? Speaking of love, on April 7th, 1990 we were married. It was also the day that Denise had been waiting for all her life! Words can not express the joy and happiness that she was feeling! She was absolutely beautiful in her wedding dress! It was one of the happiest days of my life! The reason I say ONE of the happiest days is this. In April of ’94, I was reunited with a sister that I had never met after 28 years! It was like something out of a fairy tale! It also made a very big impact on Den’s life as well. She was now an Aunt to 2 niece’s and a nephew, age 4, 6 and 8. This meant more to her than anyone could possibly imagine! It would also come into play later on down the road, not only for Den but me as well.
During the course of our marriage, Den was in and out of the hospital. It became quite routine. Usually about 2 or 3 times a year for 10 days to 2 weeks at a time. She was admitted with everything from colds and pleurisy, to the most serious which was coughing up large quantities of blood. There were quite a few times when I had to take her in to emergency for that. The really bad thing about it was WE ended up telling the doctors what she needed. Unless you were a CF specialist you really knew nothing about CF unless you’ve lived with it!
Near the end of 1991, I was lucky enough to land a job with the City of Windsor as a Building Manager in one of their high-rise units. It included an excellent wage and benefit package that came in handy many times. We also had to live on site as part of the job, which was good for me. I could be home for Den if she had any problems. Den’s brother Michael, who also has CF, moved in with us. Den continued to work at Tunes for about another year, at which time her condition became bad enough that she had to quit her job and go on a Disability Pension which only paid her about $400 per month. She didn’t like it one bit, but she just couldn’t handle sitting in the office working all day. It was going to be a little harder to pay the bills, but it had to be that way and I wanted what was best for Denise.
All during the time we were together, Den had always said how much she wished she could have kids. Dr. Varga told her that the chances of her getting pregnant were very slim. he also said that if she were to get pregnant, it would be very hard on her body, and he wasn’t sure if she could survive the full term. That was devastating to Denise. She would often ask me what she was good for if she couldn’t have children. All through this I would tell Den that I didn’t want kids. I’d tell her that kids weren’t for me. I’d do this so she wouldn’t feel like I wanted something that she couldn’t give me. All I was thinking was, “how can I tell her that I want kids when she can’t have them?”. It would’ve killed her to know that I really wanted children and she couldn’t be the provider. I couldn’t do that to her. Then one day something happened. It was that special time of the month and Den had noticed something strange in her discharge. She thought this was odd so she called her Doctor and told him what happened and described it in detail. He told her to come in to the office for some tests. It turns out that she WAS pregnant for a VERY short time and she had a spontaneous abortion. As upsetting as this was to her, now she knew she COULD get pregnant! The only obstacle now was the stress to her body. This was a major factor. Although it happened that one time, it never happened again. We had to deal with that fact.
Our relationship was a very intellectual one. We would get into heated debates about anything and everything! It kept things exciting around the house! We also enjoyed doing things as a couple. Going out to movies was a favorite pastime of ours as well. I always made fun of her when we would go to a movie and she would cry. When we went to see The Lion King and I cried at the passing of Mufasa, I didn’t hear the end of it! That was always a big laugh. There were quite a few inside jokes that the two of us shared over the years. To steal a line from Jerry MacGuire, she completed me.
Over the next few years CF became a part of everyday life for me. Watching Den have her aerosol mask, take her antibiotics, enzymes, and numerous different vitamins, became second nature. When we were out somewhere, having to come home because she had to have her mask was just a part of life. One thing that always made me laugh, was when Den would be having a hard time breathing, she would say, “come and get this elephant off my chest!”. She always made light of her symptoms because she wanted to save everyone from worrying about her. She would never let anyone know just how sick she really was. Always thinking about everyone else!
Denise has 2 younger brothers, Dale and Michael, both of which have CF also. Dale, who was 2 years younger, for some reason, was very stubborn, and would never take his medications. He was in the hospital constantly from being malnourished and having a weak immune system. It killed us to see that, but you couldn’t tell him anything! He would get very angry and tell us to leave him alone! Still, he was our brother and we loved him. Then in the fall of ’92, Dale was back in the hospital, and this time, not taking his meds was catching up with him. His health was deteriorating rapidly. His organs were slowly beginning to shut down. This went on for a few weeks. All the while, Denise and Michael, along with the rest of the family, took turns at his bedside. I was not dealing well with this because it was too close to home.
I couldn’t bring myself to go to the hospital. Then one day I was sitting alone at home and a strange feeling came over me. To this day I don’t know what it was but I knew I had to get to the hospital. Upon arriving, I met Den and the rest of the family. Den and Michael and I went into Dales room where their mom and dad already were. He was not doing very well at all. After about 15 minutes, he asked Mike and his dad to help him to the washroom, which they did. When he got there he turned to us and said sternly,” I have to get back to bed!”. As we got him back into bed he began to gasp for air frantically. This went on for about a minute, then his heart stopped. Just like that it was over. Surprisingly, Denise was being very calm. It must have been the shock. Consoling everyone else seemed to be her objective. I, on the other hand, had lost it! I just watched my brother-in- law die! I’d never experienced anything like this before in my life! How could this happen?!! Well, it did happen, and there was nothing that any of us could do to change that. Now it was time to deal with it. It was when Den and I arrived back at home that she finally snapped. She cried and screamed and yelled for what seemed like hours. She just kept saying, “Why did this have to happen? Why! Why!” What could I say? I couldn’t justify it! As far as I was concerned it shouldn’t happen to anyone! It SUCKS!!!
Dale died on Nov.11/92. Remembrance day. It took a while for us to get back some type of normality in our life, but we fought on. The year is now 1994 and we are living contently but not beyond our means. Den had been in the hospital for Christmas and New Years of ’93-’94 and it was now the fall of ’94. Dr. Varga (CF doctor) had told Denise that he wanted her to go to London to be assessed for a lung transplant. This didn’t sit well with her. In fact it scared the hell out of her! She didn’t think it would be worth all the pain and rehabilitation to live just a few more years. Then she asked me, “what do you think I should do?, “cause I really don’t want to die y’know.” I was speechless. This was a life or death decision and she was asking ME what she should do!! Trying to remain composed I replied, ” I think you should go for it! Wouldn’t it be nice to wake up and take a nice deep breath!”. Her response was, ” I guess so, but I don’t know what that’s like in the first place so I don’t know what I’m missing.”. We left it at that for the time being. It was now October and time for Den to receive her annual flu shot. It seemed almost like clockwork that after she got her flu shot she ended up in the hospital a month or so later. I think the cure is worse than the disease! Sure enough, on November 11, 1994, the day her brother Dale died, she was admitted to hospital. This time it wasn’t good news. Dr. Varga said she had a spot of pneumonia on her lung. The antibiotics weren’t doing their job and he was going to have to put her on steroids. SOLUMEDROL as a matter of fact. Den wasn’t doing well up till now and I knew it was only going to get worse. I had never seen her this bad before. I had also heard Den talk about the bad things that can happen when one is put on steroids. The fact that your body may not be able to do without them, then they gradually lose their effectiveness. I was really beginning to get scared. I was trying to remain optimistic but it was hard.
Even though Den was trying to keep a brave face on I knew that she was worried and her morale was low. That’s when I decided to try and do something to cheer her up. She had not seen our dog Kudo in quite a while, so I decided she should! We asked Dr. Varga, who in turn TOLD the hospital staff that this was going to take place. I went home and hitched the little guy up and off we went to the hospital. I got quite a few stares when I walked into the emergency entrance with Kudo leading the way! The hospital security stopped me and said,”I’m sorry, but you can’t bring him in here.”, to which I replied, “Oh yes I can!”, and proceeded. When I walked into Den’s room with Kudo her eyes lit up like a Christmas tree!! It was one of the best feelings I’ve ever had! From then on Kudo came with me to the hospital and spent his time lying with Den on the bed. She was a completely different person!
After a couple of days of steroid treatment, Den called me and said she felt unbelievably great! I was ecstatic! I thought my optimism was finally paying off. Then, as fast as it happened, it changed. She began to get worse after a few days. I began taking time off work to spend the nights with her in her room. My worst fears were becoming reality. A day or two later, a nurse came into the room and said, ” Todd, Dr. Varga would like to see you at the nurses station.” My heart dropped. I knew what was coming. I got up and walked out of the room. I began to walk down the hallway. It was the longest walk of my life. It seemed like miles! When I arrived, He told me to have a seat. He then proceeded to tell me that her lung capacity was down to about 25% and there was a giant spot of pneumonia on that part of her lung. He described it as a starburst. All they could do now, he said, was make her as comfortable as possible. Being on the Dnase (Pulmozyme) bought her about 6 months he told me. Without it this would have been happening 6 months ago. He offered his sympathy and his help if there was anything I needed.
All I was thinking about was, now I have to walk back into that room like nothing’s wrong! Den’s on a heavy oxygen flow but she’s still conscious and has all her wits about her! I was hoping she wouldn’t ask me what he wanted. She didn’t, but I think she already knew. To show you what type of person she was, a few days before this was my b-day. Den insisted on coming home for my b-day! So we loaded up the car and off we went. She could hardly even walk two steps without stopping to gasp for breath. It was breaking my heart. When we arrived at home, she perked up quite a bit when she saw Kudo! It was nice to see her happy. We’d been there for a few minutes when she gave me THE CARD. I opened the card and read it. I’ll read what was printed on the card first.
It said; Remembered joys are never past- They’re simply tucked away To live again in memory Another time or day….. And as each year adds more of them- The larger ones and the small- Time seems to make “remembered Joys” Still sweeter to recall
Todd; For all the happy memories we’ve made, and for all the special ways you’ve touched my life through the years, I want you to know I’m grateful.
Now I’ll read the message she wrote to me. Mind you this was 8 days before she died.
“God, I can’t even READ this card without crying. EVERYTIME I look at it I start to cry because every single word on it is what I wanted to say to you, especially now. ( and yes, now I’m crying again.) I know you KNOW how much I love you but I guess I don’t say it enough. You are my whole world and you’ve made my life better and happier than I could have imagined! I know it’s a huge responsibility, but you are THE person in my life that I trust with it , and I know that I can always trust and count on you to do what we both know is best for me. And no matter WHAT happens, always remember, I WILL ALWAYS LOVE YOU! ( still crying!)
Love DEN XO
I couldn’t believe what I was reading! She knew what was going to happen. I broke down crying in the living room while she was in the washroom. I tried to compose myself when she came out so I wouldn’t upset HER. Den said that this was too much for her and she had to get back to the hospital. She wasn’t doing well at all. Over the next few days she went downhill fast. She made sure to tell me that the only people she wanted staying with her in her room were myself, her mom and my SISTER. While all this was happening with Den, my Nana was in another hospital dying. I was running back and forth between hospitals to be with each of them. I was drained mentally. How could I keep this up? Then on December 1, 1994, my Nana died with me at her side. I was crushed. The first person I called was Denise. She was consoling ME! I then spent the next few days with Den. On the morning of Dec.5/94, she was very bad off. I asked her while we were alone if she was tired of fighting yet. She replied, “yes”. We began to inform our family and friends about the severity of the situation. Most of my relatives came directly from my Nana’s funeral to be with us. Den was beginning to slip farther away. She asked to have another shot of Morphine. I asked Dr. Varga for something also, because I was losing it. By now, everyone was gathered at the hospital. It’s now a few hours later and Den is no longer able to open her eyes or speak. It’s all she can do just to get air into her tiny little body. It was ripping my insides out! Just then, one of the nurses came into the room with another syringe of Morphine.
With our immediate family in the room, my sister included, she looked at me and asked,” would you like me to give this to her Todd?”. I replied, “yes”. It wasn’t more than 20 minutes later that her breathing became very shallow, then as to say goodbye, Den sat up in her bed and began to glance around the room, her eyes as wide as they could be. At this point I told her as many times as I could that I loved her! Then, as fast as it happened, it was over. Den laid back down and was gone. I was now alone. How could this happen?! She was so full of life! What am I going to do now?! I was in shambles. The one person that I truly loved in my life was now gone.
Now it’s the first day of the rest of my life without Denise. Where do I go from here? It’s almost 2 years to the day that she died. I cherish the memories that we made together. I know Den is still with me and helping me through the tough times. I still have her baby brother, Michael, to look after. There will always be a special bond between us. One that time cannot diminish. As my b-day approaches, as well as the anniversary of Den’s passing, I reflect on every thing that’s happened in my life. I don’t regret any of it and I’d do it all again. The only thing I might change would be to cure CF. I hate to think what my life would be like had I not met Denise and her family. Den taught me a lot about life and how to live it. Even though she’s gone I’m still learning from her. If ever anyone has a chance to befriend a person with CF, don’t pass it up! You’ll have found a very special friend and someone who will touch your life for many years to come.
Someone on the list some time ago wrote about “earth angels”. I believe with all my heart that my sister and her family are just that. In the short time that Den was around to be with them,they made major impact on her life. Her nieces and nephew, Amanda, Meagan and Brandon, were the finishing touches in her life. Even though Den was only around to know them for close to 8 months, they will never forget their Aunt Denise, as she will always carry them with her. I will be forever grateful of that fact. If I had not had my sister there for me, I would never have made it through such a difficult time in my life. She was there for both Den AND I and I am extremely grateful. I may have left some things out, but I tried not to. If anyone has any questions or would just like to talk, I would be more than happy. I write this at a time in my life when I’m feeling a little confused about the whole thing. Life that is. I’m wondering what kind of message Den is trying to send me. I’ve been in one relationship since she passed away, but I guess it just wasn’t meant to be. Now, I’m alone again. And yes, I’ve been crying throughout writing this whole thing. Just as Den was when she wrote her card to me.
To anyone that is questioning getting involved with someone with CF, don’t let it discourage you. It will probably be one of the best decisions you’ll ever make. They WILL make a difference in your life just as you will make a difference in their’s! They are very special people and you’ll end up a much better person for having known them! I am so happy to have had Denise in my life, and I feel like one of the luckiest people in the world! Wherever you are Den, I WILL ALWAYS LOVE YOU AND I MISS YOU!
Living With CF by Kim Payne (11/97)
(mother of a young man with CF)
If you research the archives of CYSTIC-L, you’ll get a good idea of what it’s like to live with a child with CF (CWCF).
Every day is a different day – you hold your breath and curl your toes each time they cough, hoping and praying it’s not a precursor to something worse.
Like any parent, you sit up at night when they’re sick with fevers – but amplify this by holding the nebulizer mouthpiece of a snoozing or coughing child while you stare sleepily into the dark night. While the rest of the world sleeps, some tiptoe quietly into their child’s bedroom to infuse a 12:00 a.m. IV treatment.
Some parents kiss their children good night after reading a storybook and supervising teeth brushing – while some parents of PWCF also hook up a nightly tube feeding. This of course is after the nightly breathing treatment and favored method of airway clearance, e.g. clapping, flutter, vest, pep mask, etc.
During these times, you learn how to operate on less sleep – and with an eye on the medical equipment surrounding you, wonder if it’s possible to really take coffee intravenously…
You learn to analyze the minute details of the monochromatic contents in a spit cup – and nervously watch for flecks of blood. You grit your teeth if you hear them cough up what sounds like a ton of gunk – to learn they spit into the sink and washed it down before you could check it.
Changing the diapers of a baby with CF can sometimes be an exercise in gag control… Your toilets might plug up on a regular basis and you consider buying stock in Lysol products and whomever makes Cottonelle and Charmin…
Parents of CWCF rejoice at each inch attained in height and every pound gained in weight – and cry at each ounce lost. School-age children take tests in school – our kids do too, but they also take blood tests, sputum tests and pulmonary function tests – some have bone density tests. School children have photos made each year – so do our kids, but they also get a photo taken of their lungs – and sometimes their sinuses and intestines too. Some endure finger sticks if diabetes is present. We aren’t lucky enough to have a grading system of A-F – we have to figure out what numbers best apply to our child and hope human error hasn’t cost us an extra stay in the hospital or the dreaded news the child is now resistant to a certain antibiotic.
You learn how to hide enzymes in the foods of recalcitrant infants and tots. You learn to read labels for the highest calorie content. You learn the meaning of a well-balanced diet and your expertise in food preparation begins to rival that of Martha Stewart – presentation is 90% of the art of feeding any child.
Anytime a Certified Freight truck goes by – you get a lump in your throat. Darn those big red and green CF initials anyway… Aren’t we allowed to forget for just one minute?
But on the other hand – you become a more compassionate, empathetic, and patient person. Despite trials, you have the opportunity to attain the golden awareness that everything you say – everything you do or don’t do – really makes a difference in the life of your children. Every moment is precious. Even the smelly moments…
Being the parent of a child with CF enables you to develop an inquisitive and scientific mind – scoping out information about genes, cells, organisms, herbs and treatments. Even if we weren’t good at science when we were kids – just look at what we can do now! You also become adept at handling insurance and hospitalization forms…
You learn to be gracious and tactful even when you don’t want to be, like when a stranger or your child’s new barber comments on your child’s “cold,” or a clothing salesperson comments upon sizing difficulties because your child is “too” thin for his sleeve length…
You learn how to be assertive so doctors and staff will listen – really listen to what it is you and your child need, because they are not gods nor mind readers…
And even though you try not to push the envelope on the words “hope” and “cure” – they are always in your heart.
Most every parent sleeps with one ear attuned to the littlest sound – but some parents of a CWCF listen for absence of sound, “Is the oxygen tank working?” “Why did s/he suddenly stop coughing?” “Why isn’t the air purifier humming?”
Sometimes you find yourself doing a load of laundry in the middle of the night – after your child has coughed so much they’ve finally vomited on their sheets and blankets – or fevers have soaked everything.
In the beginning, you wonder, “Is this something I should call the doctor to report?” Then you learn to trust your instincts – you know when to call the doctor – and you want to be able to go straight to the top instead of dealing with a revolving door of telephone receptionists or approval from an HMO.
As a parent of a CWCF your spelling and vocabulary improves. While your friend’s minds are turning to mush from Barney and Mr. Rogers, you’re learning to pronounce and spell words like: pseudomonas, aspergillus, and cephalosporins.
You get a crash course in physiology and biology. You learn about clubbed fingers, oxygen and carbon dioxide exchange, and the role of the pancreas…
…And Part II of the sex ed talk you have with your teen takes on the added vocabulary word: vas deferens – along with the reminder, “Just because you might not be able to procreate, doesn’t mean you can go out and test the theory… your risk of contracting a sexually transmitted disease is the same as others in your peer group.”
After Christmas, while some are taking advantage of sales, you hit the pharmacy to pre-buy meds to take advantage of year-end tax deductions.
You ignore the jibes of your friends who think you’re obsessive-compulsive because you wash your hands frequently. You begin to resent the fact you have to remind health practitioners to wash their hands before touching your child or the things in his hospital room.
You seethe when other parents send their kids to school sniffling, their noses caked with green crud. You buddy-up to the school secretary so when your child wakes up sick, she doesn’t get tired of you calling and asking, “So… just what is going around the schools right now?”
You teach your child to share – but stand aghast when your son’s girlfriend shares her pre-chewed gum with him. At ticker-tape speed, your mind reels off the cost of antibiotics and vitamin c…
You understand that when friends and relatives ask about the well-being of the CWCF, they don’t mean to exclude the existence of your child w/o CF.
Sometimes you feel like you’re in a 3-ring circus. You juggle and balance home, work, hospital, and siblings. You often walk a tight-rope of emotions. You’re in the lion’s cage facing home-health and insurance issues (who else would hire so many Bozos?). You never hear about people running away to join a home – you wonder why people would run away to join a circus…
You worry about your CWCF on their first sleepover. You count your blessings when the parent of your child’s friend says, “Show me how to do cpt so you can get away this weekend.”
In some parts of the world, there are certain rites of passage. Having a CWCF is also being aware of “rates of passage:” height/weight rates, O2 rates, sterility rates, insurance rates, mortality rates, divorce rates…
And when people quote, “It takes a village to raise a child,” you realize just how big your village is, and how very grateful you are to have so many caring and competent villagers on your side.
And the Bozos you relegate to the local cannibal…
“When Illness Is a Secret” (5/97)
(c) Matt Curtis
I swore to hate the woman who told me to undress,who sat me on the examining table, and who took my father away to talk with him outside my presence. Ihated her for her chilly brusqueness, for having seen me in my underpants, and for having mentioned within earshot the words cystic fibrosis.
I knew from a television commercial that CF was about children dying. It was about a girl and her doll on a hospital bed, in an oxygen tent, while sad music played and a deep voice talked about all the unlucky children who would die from this disease unless money was given to help stop the suffering. Then the sides of the screen turned to a grey-white mist that shrouded everything until there was only silence.
I wanted to leave in a hurry, to collect my pants and my dad and rush away from the nurses and doctors and their electric sweat tests and stethoscopes and white jackets and their stale, clean alcohol smell. I wanted to cry. I was nine; I was alone, ashamed, embarrassed; and, according to the man on TV, I was dying. I whined in the hall to my Dad that I didn’t want to have CF. He looked shocked and asked how I knew what it was. Then he said he didn’t want me to have it either. That was all he said before he took my hand and continued walking.
I swore to hate all of them and everything. I kept a list.
I hated my new doctor. Whom I met in a hallway, while I was crying. He told me to stop.
I hated the physical therapist, who taught me postural drainage by laying me tilting downward on a padded board and clapping on my chest; who told me I’d have to do this twice a day for the rest of my life, and then tried to tell me about Disneyland.
I hated the drawer of candy reserved only for children with CF, though I liked the nurse who kept urging me to take some. The more she offered, the more I could say no, no, no.
An apostle from my church blessed me that first day in the hospital. He was a real apostle, the kind Jesus had, only he wore a suit. He smiled at us when he saw us — he knew my dad personally — and offered to give me a blessing.
Do you know who this is? Dad whispered. Yes, I said. I knew about apostles. I knew about miracles, too, so we gathered in an unused room. I looked for signs of this apostle’s power. He was a big man, with clear eyes and large palms. He put his hands on my head and prayed, blessed me to be strong and have faith, to know that God loved me. I could tell right away he wasn’t going heal me. Still, I listened to the very end, hoping. I knew you didn’t make enemies with apostles, so I smiled back. I could not hate him, because he was an apostle, but I hated his weakness.
In the parking lot I asked my dad why the apostle hadn’t didn’t heal me. He just said he didn’t know. I had my hand wrapped around two of his fingers. I did not let go, could not let go. I could not hate my father.
They gave me green enzyme capsules, larger than a Contac and made from pig enzymes, my doctor said. Take two or three with every meal, he told me, grinning. And no more peanut butter, or ice cream, or French fries, or Kentucky Fried Chicken, OK? He tossed the brown glass bottle of them in the air, then handed it to me. I hated him for that.
I could swallow four at a time without a hitch, which was better than my brother, who could barely swallow one, but it was a hollow victory because he didn’t have to take them. Soon I started forgetting them and lying about it when asked.
The capsules broke sometimes, at school, or in my pocket, or on the playground. I would dig my hands into my pocket and get powder jammed under my fingernails or scrape my fingers on the edge of a broken capsule. When they broke, I pulled my pockets inside out on my way home from school and let the wind carry the powder into somebody’s bushes. If they didn’t break, I took them secretly in the lunchroom. Vitamins, I’d say, if someone saw. I skipped them if I was having too much fun, or took them after lunch, when they weren’t any good to me. Sometimes I kept them in my pocket for days.
I hated postural drainage, too. I insisted on using a code in front of my friends. My father would yell across the yard that he needed to see me “for about twenty minutes” when it was no longer possible to put it off. One time a neighbor girl caught us in the act. The setting sun was shining through the lace curtains of our patio door. I was lying at an angle on the therapy board (the same one my father had used when he had polio), and he was clapping on my chest, tryingt o loosen the mucus that never came, when I noticed the silhouette of her head peering in through the window. I sat up and yelled, Look! but it was too late — she was already gone. I hated her, then, too.
When I was fifteen I had the chance to work away from home, but only on condition that I would let my cousin do the therapy for me. I swore that I would. He did it twice. I explained to him that it was optional, to be used only when I was obviously sick, like with the flu, and that he wouldn’t need to do it again. He believed me, or maybe just didn’t know what else to do. That day I promised myself I would never again get on that board, and I have kept that promise.
But I couldn’t get completely away. At a picnic, absorbed in hamburgers, I would look up to see the red and green initials of a Consolidated Freightways truck rolling south on the interstate, and the familiarity of those letters would sting for just a second before I forced myself to forget. Every time I coughed too loudly or brushed my hand against the pills in my pocket I exercised this same trick. I kept control this way. I could do it forever, I thought.
* * *
One in twenty-five Americans carries a copy of the defective, recessive CF gene. Most are unsuspecting because their dominant, healthy gene compensates. But when two unsuspecting carriers conceive a child, their baby stands a one-in-four chance of inheriting both its parents’ faulty genes, and cystic fibrosis is the result. It is the most common inherited fatal disease in the United States.
The CF mutation causes a faulty flow of salt molecules in cells that line the walls of the lungs and pancreas. Thick and sticky mucus results; in the pancreas, this viscous fluid blocks the flow of enzymes to the stomach, and the child fails to absorb nutrients. In the lungs, the mucus restricts airflow and acts as a culture for bacteria. Over time, frequentinfections inflame and then destroy lung tissue, ever decreasing the capacity for air.
CF kills three people every day, according to the New England Journal of Medicine. I knew one of these people. Just an acquaintance, really. He was wandering through the clinic at the University of Utah Medical Center one afternoon when I happened to be there getting a checkup. He had his portable oxygen with him, tubes running into his nose. He was laughing, joking. He scared me.
He was waiting for a double-lung transplant to come through. A newspaper story about him hung on the door of the clinic, along with a picture of him in which he looked strange and helpless. I didn’t usually read articles about sick people. But after he left I read it, because seeing him there, with his wry smile and slight slouch, a real, palpable dying boy, intrigued me beyond my ability to restrain myself. We were linked somehow: he had what I had. Despite the huge, obvious differences that I believed would forever separate us, there was no denying that somehow we were linked.
Anybody about to have a double-lung transplant is dying; it’s too dangerous to try on someone who might live. Besides just the surgery itself, they suppress your immune system for the rest of your life to keep you from rejecting the new lungs. Survival is a fifty-fifty proposition, but if you make it, CF never comes back to the lungs. I tried to imagine that.
You also had to have a hundred thousand dollars. I remembered that again a few weeks later when I saw his face and his story pasted on jars of change at the Smith’s Supermarket on Sixth Avenue. I know him, I thought, and wondered if anybody would stop to read his story, if the lady writing her check would drop in a quarter. It seemed he was trying to put us all in somekind of emotional headlock with that plaintive photo and his desperate circumstances . That’s how brash dying makes you, I thought.
I tried to picture myself standing in front of the store manager, explaining about my disease and how I needed a hundred thousand dollars to live. I’d rather die, I thought.
I didn’t contribute to his cause. I should have –we were confederates — but a quarter seemed like it would have just been mocking him. Later, I heard the operation was a success. Later still, I heard he’d died from complications.
Stories like his are why I stayed as far away from clinic as possible. The whole place, with its sick and wounded, was like some kind of spook house where, if I wasn’t careful, I would touch something horrible, catch something visible, become something altogether undeniable.
* * *
When I was twenty-three I caught the Asian flu. I had never before been so sick, and my health was never the same again. My cough got richer, deeper; my infections more frequent, more difficult to treat. I had less air. Suddenly, unexpectedly, long bike rides winded me profoundly. Within a year or two trips to the clinic had carved themselves into my regular schedule.
At first I blamed this change in my health on a bad relationship with a beautiful piano player. I had begun to love her, and in what I perceived as fairness to her I had told her I was likely to die early and that I probably couldn’t have children. I pointed out that, after all, we were meant for adversity, quoting one of the leaders of our church. She said that while it was true we were meant for adversity, it was also true that we shouldn’t seek it out. I couldn’t disagree. We stopped seeing each other, and I vowed to tell no one else.
Afterward, I concluded that the weight of that moment had adversely affected my chi, my vital energy, which explained my weakened immune system. I signed up for acupuncture treatments. I didn’t mind the needles, or even the phenomenal paralysis that one day caused met o drop to the floor of the examining room, but the treatment brought no relief for my cough. So I theorized that my disease was a result of a sour mind. I believed that if I could dig up all the moments of hate and bitterness in my life and retroactively forgive every offense, the ensuing rush of love and positive energy would reactivate my immune system and cause a remission. On the advice of a naturopath from New Zealand, who also prescribed a crate of oranges, I wrote out all the anger I supposed I had at my mother for dying early, then burned the letter. I stopped taking my enzymes and antibiotics. My coughing got worse, and my stomach ached.
I tried being more valiant in my devotion to Jesus. I sought the power that had healed the sick and made the lame walk, and which He’d promised all believers everywhere. I got up early and read the scriptures. I prayed. I went to church, paid my tithes, tried not to think evil thoughts, and again offered up my drugs — this time on the altar of my faith. But again my coughing got worse.
I tried herbs. I bought double-zero-sized clear-gel capsules and filled them with echinacea root, marshmallow root and bee pollen, with cayenne pepper to catalyze the reaction. These were natural antibiotics, according to my brother’s herbal counselor, who didn’t know exactly what CF was but was sure anything natural was better than regular antibiotics, the very name of which meant “anti-life.” Again, infection came, and I began to keep my sister’s children awake at night with my coughing, so I moved outside with my sleeping bag. My sister came out in her nightgown to say, quite delicately, that I was disturbing the neighbors.
I threw the herbs away. I had given up trying not to sin. I let all my latent hate and bitterness seep back in where it felt most comfortable. I called my doctor and confessed to yet another infection. I asked him why he thought I was getting so sick. He laughed and said I had CF, an old joke of his. I smiled. I’ve always had that, I said, but I haven’t always been this sick. He said everybody who’s been asymptomatic feels that way eventually. This is how it hits.
So how long do I have? I asked. He said he didn’t know. If I had emphysema, he said, he could plot me on a chart — it was that predictable. But with CF therew as no telling. I could plateau or I could drop; it was anybody’s guess. But there are never any reversals, he said.
* * *
Carla was the first person with CF with whom I ever made friends. Once, I lent her my university ID. She needed it to check out books, and I decided to tag along. We had to park off campus and walk to the library, but it wasn’t until we had arrived on the third floor that she told me she was impressed — I wasn’t even breathing hard. I noticed then that she was doing her best just to keep up, trying not to be obvious as she caught her breath. I found myself wanting to comfort her, to put my arm around her and laugh and tell her I was sorry, but I didn’t. I turned away and pretended not to hear. Her feebleness scared me.
I don’t remember exactly when I first noticed it myself. I do recall thinking about her some time later, while I was walking up and down the rows of the stadium parking lot in the cold, unable to find my car, losing my breath.
After a meeting on lung transplants I asked Marian, one of the nurses, how I was going to die. I was sitting with her on the steps in front of the lecture hall, where they were serving sugar cookies and punch and people were milling around murmuring about health-care costs.
Marian is the prettiest nurse at the University. She isn’t much taller or older than I, and she has my same coloring — dark brown hair and eyes — but with creamy white skin and dimples. I wanted details, and I wanted them from her.
Is it suffocation? How, exactly, does it feel? She wouldn’t get specific, but she held my gaze as I asked.I believed in the things she said. I asked if she had ever been there when someone with CF had died. She said she had, that it wasn’t very pretty. I already knew that, but I didn’t mind her saying it. I liked knowing she had been there, and had come back, and was still so beautiful.
* * *
In September 1991 my lung capacity was half of what it should have been for someone my age, height and weight. I was teetering on the line between the mild and moderate ranges of my disease. I had lost a full liter of lung capacity in the previous year alone, but my doctor thought that if I came into the hospital for a stay, he could bring it back up.
That June I had been to visit Carla in the hospital. It was a brief visit; I was just curious. I was beginning to catch on to the routine by then — the predictable week-long stay with intravenous antibiotics, intensive chest-percussion therapy, and lots of rest. Still, I wouldn’t have gone back for a second visit if she hadn’t made me promise.
She and her sister, who was also sick, showed me around. I found myself in places I swore I would never go, like the exercise room, where cystics, as she called them, rode Exercycles and spit into cups to measure their production. In Carla’s room, the woman in the other bed was dying. I could hear her cry out softly, and each time she coughed I had to grip the sides of my chair. Carla kept right on talking, and so did I, because to stop would have been to draw attention to this woman. It seemed important to carry on.
Carla introduced me to everyone one the ward, and she told them all I was a cystic, as though it were some kind of miracle. She made remarks to her sister about my veins. They seemed envious. I asked why and they just laughed, shot sly glances at each other and moved on. Later it occurred to me that good veins might make easier the insertion of needles, but this connection came slowly, tentatively. Like the title cystic, which at first revolted me, then slowly seemed more tolerable as it became clear that nobody seemed to care. But was enough just to try on illness for an hour, to contemplate for a moment the handiness of my veins. I would not be facing these things any time soon, I was certain.
* * *
It’s here. “Here” is University of Utah Medical Center; here, after so many years, is this moment, 4 a.m., after the night nurse has attached another bag of oxacillin to the tube in my arm. Here is this grey light that blurs the borders of the room, the shaft of fluorescence from the nurse’s station that slips under the door, and the window next to my bed looking out onto the foot hills, over which a large moon hovers. Here is this portable pump, pushing in a second, experimental drug, and the regular whir of its small electric motor, two seconds out of every sixty, like a slow mechanical lung. Here — in this bag hanging from the pole, this nurse’s visit, this light, this room –is what I have been dying from secretly in my mind since I was nine, when that woman spoke the name of my disease, and the girl on television faded to white. It’s here, the moment I thought would kill me, and I’m alive.
* * *
I got used to being in the hospital. I walked the halls with mussed-up hair, wearing an old T-shirt and hospital pants, carrying my portable IV pump wherever I went so the juice would continue flowing. I watched for people’s reactions as I passed them by, to see whether they smiled or looked away. Staff, especially women, usually smiled. Visitors mostly looked away. I let my family come to see me, and we went for walks in the basement corridors late at night. My old bishop called. I warned him that I wasn’t really sick yet, that this was just a protocol.
I took my IV port home for two more weeks of drug therapy. Everything fell immediately back into order. I wore long-sleeved shirts to cover up the tube in my arm. I told my boss I’d been to southern Utah during my time off.
I gave myself oxacillin four times a day, an hour each session. In order to get to work on time, I finished up my infusion on the freeway. During the day, I used the stalls in the men’s rooms on campus.
Sometimes the syringes broke, just sitting in their box in the refrigerator. I would dig my hand into the dark cardboard box and get the cool liquid all over my fingers. When I didn’t finish a syringe because I was late, or too busy, I left it in the glove compartment of my car, sometimes for days.
* * *
A woman in my modern-critical-theory class caught my attention. She was a self-confessed biker chick, hada pink cloth pig sewed onto the cuff of her jacket, and loved tattoos — even wanted to open her own parlor someday. Once, while we were studying together, the subject of writers came up. She mentioned that she was writing her own book. I asked her what it was about, and she opened her green bag and fished out a folder full of papers and newspaper clippings, The front page of the Macon Telegraph and News had her picture in full color and a headline with the word nightmare in it. I asked what the nightmare was. She said she was on parole.
Why? I asked, and she told me her story in bits and pieces: As a high school student she’d gotten good grades and twirled a flag for the drill team. By the time she was a senior she was into drugs, had dropped out of school and run away from home. She stayed strung out for days at a time. On a trip to Florida with her much-older boyfriend and his friends, five kilos of cocaine was found in one of the cars and they were all arrested for trafficking, a charge the authorities refused to reduce to possession because she refused to turn state’s evidence. She was bailed out after four months and came home to wait for her trial. She earned her GED, became a mother, and started college. She was eventually tried as an adult for a crime she’d allegedly committed as a minor, was convicted, and served twenty months in federal prison in Georgia. Now twenty-three, still in college, she lectured to women’s and children’s groups on the evils of drugs, pays her five-hundred-thousand-dollar fine in twenty-five-dollar monthly installments, and has 23 more years of parole.
She was angry. She was writing her book to expose the corruption of the justice system. Her jail and prison experience had sickened her soul, she said, and she believed keeping people alive on death row is a fate worse than killing them.
I said I thought the whole thing was really cool.
Selling drugs? she said.
No, that you’d tell me all this.
I wanted to roll up my sleeve and show her the glass capsule sewed into my arm. I wanted to say that she was right about prison and death row, to tell her the name of my disease.
She offered her manuscript to me for the weekend,and I took it home. It wasn’t just her, or her story, or that she carried it around in her bag with her that fascinated me the most. It was that when I asked her about it, she just smiled, dug around, and brought it out into the light.
* * *
The first person I showed this essay to was a friend at work. Sweat dripped down my armpits as I waited for him to finish reading it. He didn’t know what to say. Neither did I. He said he was glad that I had shown it to him. He’d no idea.
When I left work that day I ran from the building to my car, jumping along the way. I was in no specific hurry, but the elation at having fractured the dam of my secret was more than I could calmly contain. That feeling has never diminished. Each new disclosure is like a gust of clean, fresh air.