These Are Not My Mistakes!

2002 - Present

Emma is not my mistake!

Jake is not my mistake!

A couple weeks ago an AMAZING blogger, Unknown Cystic, wrote this blog post: http://unknowncystic.wordpress.com/2010/06/22/switzerland-crumbles-neutral-no-longer/.

I must say that I agree with everything Unknown Cystic very eloquently wrote and I appreciate the supportive comments that followed! The blogger, "No Excuses" was harsh in her commentary. However, I know that her opinion is shared by many others both within and outside of the CF community. I'm so thankful that Unknown Cystic took the time to stand up for us CF parents out there!

CF is not the same disease it was in the 70's. People are being diagnosed later in life and are living longer. The life expectancy has tripled in my lifetime alone. I think there is a real danger when someone presents themself as an "expert" and paints an entire community with one broad stroke. I really wish there could be more respectful disagreement, with an appreciation of personal descision-making. With the information I had at the time and the blessings of my medical team, I took the leap into parenthood.

I feel like I need to take this opportunity to shout it from the mountaintops that my children were brought into this world intentionally and with love. If I die sooner than other parents, I know that my children will be devistated, but they will never, EVER, wish that they were not born in the first place. I am doing the best I can to provide them with everything they need to grow into kind and capable adults. I know that my husband and I are providing them with a better life than many other kids with healthy parents.

So if others would like to percieve me as selfish and my children as mistakes, so be it... They will, however, never get me to see this as reality or regret my decision.

For the record, I'm not planning on going anywhere anytime soon :-)

Survivor Guilt ~ The "Why Not Me's"

1998 - 2002

This was the time when I was starting my career in Social Work. I was bright-eyed and bushy-tailed...ready to save the world. I was naive enough to think that I could help people with illness the best, because I had real-life "experience". I quickly learned that NOTHING can prepare you for a career in working with children and adults facing illness and death.

Survivor Guilt is defined by Wikipedia as "a mental condition that occurs when a person perceives themself to have done wrong by surviving a traumatic event." This pretty much sums up my life when I first entered my career as an Oncology Social Worker. I often felt a sense of guilt for "having it easier". These feelings continue today as I become more integrated into the CF community.

During grad school I worked at the hospital I am treated at for my CF, in the Pediatric Oncology Department. Through this opportunity I had some of the most life changing experiences. I began volunteering for a camp for kids with cancer, where many of the patients that I worked with at the hospital went each summer for a respite. For 3 years I spent a week of my life dedicated to helping kids with cancer enjoy carefree days with others like themselves. It was truly amazing! These kids didn't have to be embarrassed that they had no hair, or explain why they were missing a limb or and eye. There was a mutual understanding that didn't exist in the "real world". I loved these kids...for who they were, for what they battled, for the burden they carried and for what the gifts shared with the world. Many of them died. This is when I felt the first twinges of "survivor guilt".

This was me and "L" one year at camp. I spent a lot of time with "L", because he needed someone to sit and play with him while he received treatments at camp. He had been battling Acute Myelogenous Leukemia for years. He was fighting symptoms of rejection of his umbilical cord stem cell transplant during this year at camp. "L" died about 6 months after this picture was taken.

This is "T" and I. I worked with her very closely at the hospital I worked at during this time. "T" was also being treated for leukemia. She died a couple of years after this picture was taken.

This is one of the sweetest boys named "B". "B" had Ewing's Sarcoma. He lost his leg to the disease. He had lost his leg years before, and I remember how he would sit around talking to the other boys who had lost limbs to Ewing's. He would remove his leg and show them tricks on how to make it more comfortable. He would reassure them that they would get used to the prosthetic. He was an amazing support to those boys. "B" died about 8 months after this camping trip.

This is the time when the "Why Not Me's?" kicked in. Yep, I had my difficult times, but I did not nearly know the suffering that these children experienced every single day. I started asking...why them and not me? These were great children. Why are children brought into this world to suffer? Why was this their path? Don't get me wrong...I didn't want to suffer or die myself. I just had a hard time coming to grips with the fact that these children were struggling. That ANY child was suffering. Why were my treatments working, and thiers were not? It's a very odd sort of guilt that is felt in these situations. I would sometimes wish that I could take on some of their physical burden. BUT, I couldn't. All I could do was be with them, play with them, try to help them understand and cope. I truly hope that I made one moment of these children's lives better in some small way.

After working in the hospital setting, I got a job working for my current employer. This job allowed me to work with both adults and children. I was in charge of developing support programs for blood-cancer patients. Soon after I came on board I found out that my high school English teacher was one of my patients. She called me one day on the job to welcome me and we became kindred spirits of sorts. She had Chronic Lymphocytic Leukemia. It is the type of leukemia that I feel is the most similar to my CF in its presentation...slow growing and progressive, yet incurable. I have always felt a special connection with this patient population. Marty was my teacher and helped guide me through English classes (what she knew). It was now my turn to guide her through what I knew (living with an incurable illness). We had many deep conversations about illness and became pretty tight. In 2002, I raised money and ran the Mardi Gras marathon in honor of Marty.

Marty and her entire family flew to New Orleans to cheer me on and meet me at the finish line. We even had shirts made with our faces on them and a message on the back about our deep connection on so many levels. Marty died in 2003 from complications of her CLL. Marty had prepared her memorial service prior to her death and she asked that I speak. I felt honored and knew then that she valued me as much as I valued her.

Why Marty? Why Not Me?

And there were many, many more people like this that I tried to serve before they died.

HOWEVER, for every person who dies, another survives and thrives! These survivors are amazing human beings who can teach us much about life and love. So for all of the sadness, there is an equal amount of joy!

So why did I choose to take this path with my career? Why would I ever choose to work around illness and death? At first I thought I could be of service, because I understood what it meant to live with illness. I quickly realized that wasn't it anymore. It became that I felt privileged to be able to sit with people in their despair. If there was something I could offer or say, or if I could just share some silent understanding during these difficult times, then I felt like I was making a difference. The perk was that I was also able to share in the successes, which were many and were AMAZING! People ALWAYS say, "I don't know how you do what you do!". I ALWAYS respond that "I don't know how someone could NOT want to do what I do!"

Over the years I have been able to come to terms with the fact that sometimes really bad things just happen to really good people. There is really no rhyme or reason. However, the survivor guilt sometimes rears its ugly head even today.

This week as been difficult for the CF community with the death of little Conner Jones. Conner struggled with CF all of his life, and sometimes really suffered. I have to be honest, my first thought was...

Why Conner? Why Not Me? Why was this Conner's path?

My High School Awakening

High School 1989 ~ 1993




Please don't laugh!!! Ok, Ok...you can laugh. I just did! The hair, the clothes, all just tragic :-/ Those were my favorite Beatlejuice tights. I think I wore them every other day all through high school.

High school was hard. When I say hard, I mean really, really hard. It was the time that I became fully aware of what it meant to have CF emotionally and psychologically. It was a time when my "peers" were playing sports, gossiping about boys and making plans for the future. I, on the other hand, was learning about my genotype and what it meant about my chances of survival into my twenties and thirties. I was carrying the burden of wondering when this disease was going to gobble me up. I couldn't relate and I was in the depths of depression.

There was a boy at my high school who had cancer. Everyone seemed to have compassion for him...I think because they knew about what it meant to have cancer and they could see that he was ill by looking at his bald head. I don't think many people knew about my illness for the first few years of high school. I'm not sure anyone ever asked me a single question about it even if they did know. I did not walk around with visual indicators of CF. I really felt like I couldn't relate to many people and their"problems". I had little patience. I became angry.

A couple months into my Junior year I developed a very serious case of mono, which ended up complicating my CF. I slept about 23 hours per day. I missed several months of school. During my absence I got several cards from classmates who never, ever acknowledged me as a classmate up until this point. I appreciated the thoughts, but would have rather had these people acknowledge me before it got to this point where they felt sorry for me. It did not feel genuine.

When not sleeping, I had TONS of time to think, while on this hiatus from school. I honestly think I had an awakening that I'm not sure I would have had if I wasn't so ill. I decided I had to get "unstuck" from my grief and despair. I was still alive after all! If I had one year or 20 years, I had to do what I could to make the most of that time. One thing that is true of most CFer's I have met is that we are among some of the most resilient humans alive. I came back to school that winter with a totally changed attitude. I improved my behavior and improved my grades. After all, I now planned on building a future, for however long it would last. I decided to head to college and become a social worker, with the goal of helping people cope with illnesses. Stay tuned for my next post, which will discuss CF in early adulthood.

I think the biggest thing I learned during my high school years was that I could rise above the depths of my emotion, and I became a stronger person for it. I think I also learned a lesson about genuineness, and how important it is to be kind to others. After all, you never know what that person is coping with inside.

As I prepare to be admitted to the hospital for a few days next week to have my PICC line placed, then to do a 2-3 week course of IV antibiotics at home I am reminded of these high school days. I am fighting the thoughts of despair with every fiber of my being right now. Is this the beginning of my decline? What's going to happen to my babies? Will it hurt? I am allowing myself 10 minutes of stinkin' thinkin' like this each day. I am continually reminding myself that I am so very lucky to have been given these years that I was told were not going to be mine to have at a young age. I'm alive, after all! I truly am blessed ;-)

CF in the Age of Big Hair & Leg Warmers

Confessions of a Cyster will include the good, the bad and the ugly. Just an FYI, I am generally a positive person, however, I have no problem admitting when things just downright suck. If you only want the bright and shiny side of CF, this blog may not be for you... However, I know that I am much more fortunate with my health than many others with this illness. If you only want to hear about the challenges from someone who is currently struggling, this blog may not be for you either. I will be sharing my positive insight and successes in future posts. This is just one girls story...

1981 ~ 1989 (Elementary School Days)

Sick little, Stacey. Somebody should have given me a tissue instead of a cheap plastic comb... Seriously, that picture is all wrong! A little better a year later in 1st grade. Except for the clothing choice, of course.

After reflecting, I think I learned 4 major lessons during these school years:

Lesson #1: Chronic Illness Can Sometimes Become Routine
After a few years of becoming intimate with CF, everything became more routine. A pain in the ass...yes, but still routine. An hour of nebulizer treatments then clapping, followed by a huge handful of pills, in the morning before heading to school. Then repeating it all again in the evening. Oh, and I was not one of those children who sucked it up and accepted this as my reality. I'm not sure that there was a single day that went by that I did not ask...no BEG my parents to skip my treatments. I could think of a million things I would rather be doing. It was, however, part of my routine.

Lesson #2: It's Difficult to Dream About the Future When You're Told You Won't Have One
These were my healthiest years. I had lung infections, but none lead to hospitalizations. Besides all of the medications I was taking and treatments I was doing, in public I was a normal kid who seemed to always have a cold. Yet, even at this young age, I think I always lived with "death on my shoulder". I took a lot of interest any time I heard of a child dying. I wanted to see how people reacted, what the details of the death were, what the process was like... I was curious about what was to come for me. I remember how the question, "What do you want to be when you grow up?" annoyed me. I always had an answer, but I never thought past that rehearsed response. I ALWAYS have dreamed about my future only as far in advance as the current life expectancy. When I was little, I never thought of myself as a teenager. When I was a teen, I never imagined being a twenty-something. Even today, it's hard for me to see past age 37. More on that in future posts... I think this may be a form of self-preservation. If I don't dream about it, I won't be quite as disappointed if it doesn't happen. Makes sense, right?

Lesson #3: Being the Healthier Sibling of a Sick Child Can Pretty Much Suck
One thing that still makes me sad about this period of time is all of the time my stupid disease stole from my brothers life. He had the pleasure of being the healthier sibling. He had some health issues, but did not require daily treatments. This equated to him being unintentionally ignored much of the time. Everybody always said how great Jason was at entertaining himself. Honestly, I don't think he had a choice. There was only so much attention to go around. My parents did nothing wrong...I just took a lot of time and attention to care for... Honestly, it must have really sucked for him :-(


Lesson #4: Real Friends Will Do ANYTHING For You!
One thing that makes me look back an smile is the love of a few close friends, especially Lisa and Jenny A. They both took such a huge interest in learning my treatments so I could go on the 6th grade camping trip and 8th grade Washington DC trip with my class. Such a HUGE responsibility for these little girls to take on. Lisa always had my back, too. If anyone ever made a comment about my disease, she would put them in their place. Now that I have lived 34 years, I know that friendships like that are very hard to come by. I'm happy Lisa is still part of my life today and that I have reconnected with Jenny A. via Facebook ;-)

Stayed tuned for the next Chapter...CF in the High School years...UGH! NOBODY hated high school quite like I hated high school!!!

Growing Up with CF in the 70's and 80's...

1977 ~ 1981

I'm not sure where to begin, so I'm going to begin at the beginning. I was a sick, sick little girl. I spent most of the second year of my life in the hospital. No answers were ever given to my parents about why I ALWAYS had pneumonia. My problem was that I was of normal weight. I couldn't possible have Cystic Fibrosis, because I was not failure to thrive. Therefore, they refused to even give me a sweat test. Back in 1977 you either had CF or you didn't. They didn't speak of variations in severity and symptoms. My digestion was adequate, so I must not have had the disease.

The medical team must have thought my mother was either crazy or a b%*ch. After a year of hospitalizations, she refused to take me home until someone found out what was wrong with her little girl. Thus, started many years of my mother being my #1 advocate! They finally caved and gave me a sweat test. They were shocked to discover that my sweat test levels were through the roof. I had Cystic Fibrosis. When I improved they referred me to an allergist for ongoing care (what was that about???) and sent us on our way. They gave my mother the facts, which were that I maybe had 10 more years of life ahead of me. Years filled with 2 hours of rigorous treatments each day, many pills, medical appointments, worry, anxiety, grief... I don't remember a time in my life where I didn't know that my life was going to be shorter than most others. My mother was very honest with me, which I appreciate now.

For those who don't know, CF is a progressive and terminal disease that effects the lungs and digestive system. For me, the digestive symptoms are very mild. I do get repeated lung infections. Each infection causes scarring in the lungs. The scarred areas of the lung no longer function, resulting in the need for a lung transplant. In the 1970's, when I was diagnosed, the life expectancy was 12 years. By the time I was 12, it had improved to 21 years. When I was 21 years old, it increased to 32 years. With recent medical advances and more frequent lung transplantation, about 50% of us are living to see the age of 37... I'm hoping I can keep staying ahead of the trends!

From what I remember, my parents divorced soon after my diagnosis. I think my mother grieved about my diagnosis, while my father felt an enormous amount of guilt. As a genetic disease, CF is passed to a child through the parents genes. I think my father felt somewhat responsile for his little girl being brought into this world with a death sentence. I have since discussed this period of time with both of my parents. I have let them know how much I admire the sacrifices they made to keep me alive. The sacrifices were MANY. I let them know that I have never once blamed them for my CF. I actually feel like my life may not have as much meaning if I didn't have this disease. Don't get me wrong...I HATE CF...I just sometimes can appreciate the opportunities and insight that this reality has provided me.

Many of my early memories revolve around treatments or hospitals.

• I remember being locked in a glass box and screaming my head off. I think I was about 3 or 4 years old. I could see my father, but couldn't understand why he wouldn't rescue me. I remember the look in his eyes...the look of helplessness. It was very hot and I think they were trying to make me sweat. This was not the box they put you in for PFT's. I think it was an archaic way of doing sweat tests???
• I remember my mother once bringing my nebulizer to pre-school and showing my teachers how to use it. I was sooooo humiliated!!! I remember hiding behind a book shelf in the classroom. I was NOT going to get a treatment in front of all of my little friends. The horror!!! Was my mother trying to ruin my social life or something???
• I remember recovering from my sinus surgery when I was 5 years old. I was in a room with a little girl who got hit by a Greyhound bus. Her parents never visited. She cried out in pain all day and night. My mother ended up sitting with her as much as she sat with me. That was my first glimpse of suffering and the kindness of my mother.
• I certainly remember the hour in the morning and hour at night of clapping treatments that I had every single day growing up!!! Not because of being "beaten" to keep my lungs clear, but becuase of the HORRIBLE television my mother made me watch during my treatments. I think I saw every single episode of Pete Rose's morning baseball program...seriously!!! What was with that stupid chicken??? I also had to sit through every Cleveland sports disaster...baseball, basketball, football...I mean seriously!!! I got a little break when my father did my treatment with a little bit of Solid Gold, Hee Haw and Donnie & Marie...whew!

So let's summarize...

1) My first few years of childhood were not quite as carefree as I would have liked.

2) My parents were/are my heroes!

3) I am not my disease, but my disease has helped shape who I am.

4) Advice for CF momma's out there ~ let your child watch what they want on TV during treatments or they may hold it against you forever!!!