‘When did she tell you?’

“When did your mum tell you she had CF?”

I’m not sure she ever did or, perhaps, she constantly did, it is hard to differentiate these two things. From the moment I could walk, before I even uttered a sensical word I knew not to touch her medicines or equipment. She told me they were important for her health but dangerous for mine. She would sort through her tablets, explaining what each one was for. That stayed the same most of my life. She would explain that she had to be admitted to hospital sometimes because she is “different to other mothers” she has “CF” and that means “sometimes she is sick and she has to let the doctors take care of her” and this was enough for me. It was enough to me until I was 6 or 7 and my uncle, who also had CF had just received brand new lungs. He was so sick just before the transplant, unlike my mum who was running around after me and swimming every week.

She thought this would be his big break. His freedom. His life. We all did. We rooted for him. A few weeks later he died.

I couldn’t understand any of it. “How could he die? The operation was supposed to make him better? How could this happen?” It was during this period I started to think: “If he died, could my mum die too?” She explained that he was much more ill than she is but there is a serious probability that one day, she too will be that ill. Initially, I was so shocked I couldn’t ask anymore questions, despite my parents best attempts to openly talk about. Eventually, I just stopped believing it. She was too strong, too healthy, too stubborn to ever be that ill.

There were moments that made these words echo in my ear like a cruel joke. Moments when I saw her slip through my fingers and barely just make it back.

Eventually, as more of our friends and family got more and more ill and passed away I realised that maybe it didn’t matter how strong or stubborn or lucky she was.

Those dark thoughts were part of normal daily life and learning to compartmentalise at times was important and often necessary.

-Christina.

Dear Stranger.

 

 

Dear Stranger,

I sat on the old park bench with my two incredibly lazy dogs and people-watched. I saw you run around, laughing, smiling with your adorable son. I’m guessing he is around four. Both of you, in hysterics over your game of peek-a-boo. It made me laugh. It is one of those perfect sights that makes a young woman like me think of herself as a mother one day. It also made me think that you must need boundless energy to keep up with your giggling little munchkin. As soon as he caught sight of my little balls of white fur he ran straight over, you, a few footsteps behind, trying to keep up. He insisted on hugging both of them and asked me if they were twins. Then as I was responding to his many questions he coughed, abruptly and intensely. You were unfazed and apologised insisting he isn’t contagious.

He has “Cystic Fibrosis” we both stated in unison. We spoke about Orkambi and research and you told me about how you encourage as much physical activity as possible. You were so optimistic and enthusiastic, it was contagious. You made me think of how different life is now for people being born with Cystic Fibrosis. A far cry from my mum’s birth and odds in the seventies. You brought me back to a place I hadn’t been in a while. I am in this constant battle of emotions. I am torn between feeling resentful that my mum never lived to avail of the numerous treatment options out there today and also incredibly grateful that so many others lead such different lives and will have different fates. Most days, I focus on the positive. The endless emerging therapies and the stepping stones leading to an eventual cure. Some days, every so often though, I wallow. I wallow in that dark place where those options didn’t exist. Where the light at the end of the tunnel got further and further away from us and every passing day our hope diminished. You know what though? That’s okay. Grief is a complex thing.

 

Thank you, kind stranger, for the reminder that now, there is so much light. So much hope. Even in my dark spaces, people like you interrupt my solitude with your bright lights and music. I hope your son has a life filled with light.

 

Always,

 

Christina.

My womb but not my choice.

In the wake of Donald Trump’s rise to power I have been forced to confront my own feelings on some things. Everywhere I go there is some mention of reproductive rights. Something, somewhere always acts as a trigger. Websites chiming in, celebrities tweeting their own personal beliefs, a statement T-shirt on a crowded college campus, news headlines, a friend absent-mindedly discussing his overt views over drinks on a Saturday night, blaring radio segments, magazine covers, trashy red-top papers with misleading headlines, it doesn’t cease. Everyone has an opinion and most are forcing theirs down my throat. I sat in a crowded room, each of them bickering casually over their own thoughts and feelings. I reached into my bag to get my phone and instead met some old tablets. My mum’s tablets. Then it occurred to me that I hadn’t used this bag since before my mum’s passing. I held them tightly in my hand and my breath became shallow. Must. Keep. It. Together. Just as Birdy’s voice began to wind down I was transported back.

I sat in the kitchen of their house. It hadn’t even been four months since I had faced my greatest challenge. They had two children, their first has CF, now in her thirties, fit and healthy. Their second was lucky enough not to receive two copies of the gene. They spoke of their experience with their first child. They had never even heard of the disease. They faced shock, sadness and a steep learning curve. They spoke about all of it in such a ‘matter of fact’ way, emotions of their distress clearly in the past. They then spoke of their second pregnancy. This was when the tone changed. They tell me it was then that they realised they were pregnant with a ‘decision, not a baby’. My heart sank. I felt sick. I felt the colour drain from my face. I was already upset but now I was just disgusted. Did they really just say that? I had no idea how to feel. I was outraged, horrified, hurt, bewildered and just outright irritated. How am I supposed to respond to that? I zoned out. I was too busy immersed in my own grief and misery to defend my personal opinion. Then, they stated in a rather aloof ad stolid way ‘you too Christina may be faced with such a decision, since you carry the gene’.

 

Please allow me to set the record straight: I will never be faced with such a decision. A child’s life is not a decision for me. It isn’t a choice or something I can play with. Any child of mine will be loved and cared for regardless of their health or their life expectancy. How dare you confront me with your ideals.

 

I understand everyone has a journey and I don’t understand that journey unless I have lived it myself but this is my opinion. Please don’t talk to about my future. I believe in being informed, prepared and educated on these things but I certainly don’t believe I have a say in any of it. I don’t want a choice, not in this scenario. Unless I explicitly ask for it, I don’t want your advice or thoughts.

 

-Christina.

Real research, daunting disease and PhD musings.

My PhD has officially started. I am nervous. I am excited. I am totally petrified. Over the next three years I will research the Cystic Fibrosis lung microbiome. Three years from now (fingers crossed) I will leave Queens University Belfast much more informed about the subject that has captivated me since the beginning of my Science degree. I will study, in detail, the disease that plaguges my brave mother everyday. The disease that she fights, battles and sometimes even conquers.

I never really thought about the fact that I might have a unique insight into the research. A rare perspective as I get to see the condition and its many implications everyday.

I am eager to get started and throw myself into it. My entire academic life has lead up to this point. The time is now. This is not a dress rehearsal.

-Christina.

‘Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning’. –Albert Einstein

   
 Facebook: https://www.facebook.com/TheCysticFibrosisJourney

Twitter: https://twitter.com/Christina1Kenny

Pinterest: https://www.pinterest.com/christinakenny1/blogging-about-health/

Changing prospects and priorities.

To read the beginning of this post head on over to http://cysticfibrosisnewstoday.com/ and check it out!

……..I want her to life until she cries, see the beautiful sights of the world and wake up each day happy and excited for the day ahead. I don’t particularly care if she gets a huge tattoo of something I hate or if she decided to become a professional juggler as long as she is happy. Nothing else matters. Nothing is as valuable (or invaluable) as health and happiness.

I have less opinions on little things that don’t matter. I just want to be part of the beautiful journey that is her life, however I can. I am just grateful I am still here to share precious moments together. To laugh, to cry, to live.

-Ali.

DSCN1440

Facebook: https://www.facebook.com/TheCysticFibrosisJourney

Twitter: https://twitter.com/Christina1Kenny

Pinterest: https://www.pinterest.com/christinakenny1/blogging-about-health/

The five things you only understand if you have a friend/family member with Cystic Fibrosis.

  1. The constant infection.

When I tell people my mum is currently in hospital they usually ask ‘Oh no, why?’ Even those who have known her a long time. They still don’t seem to grasp it. I feel like saying ‘the same reason as always’. Sometimes they follow up with: ‘does she have an infection?’

SHE ALWAYS HAS AN INFECTION. She is going to be hospitalised frequently throughout a year. Some years more so than others. It isn’t like when a non-CF family member is in hospital out of the blue, that is a cause to ask why. If the reason for hospitalisation changes, I’ll let you know.

  1. The weight thing.

Yes, my mother is eating the world’s greasiest double cheese-burger right now and yes, her doctor is fine with it. Unlike you or I she needs the calories. She is encouraged to keep her weight steady and on the higher side. When she gets an infection the weight disappears in the blink of an eye. It is kind of insane. So, the whole ‘salads only’ thing won’t help her.

  1. How the hospital works differently for long-term patients.

No, visiting hours don’t apply to us. No, she only eats the hospital food if there is a mega famine that week and somehow only the hospital have a supply of food. No, you shouldn’t bring flowers, they are prohibited because the harbour a deadly bacteria that isn’t good for CF patients. Yes, of course she uses her phone while in hospital, this isn’t the 90s.

  1. The non-pulmonary aspects of the disease.

Her lungs are just one part of the complex disease. There are many others. Her pancreas isn’t the best and has a tendency to go a bit nuts sometimes and her intestines decide to function properly depending on the day. The disease is much more multifaceted than you think.

  1. The lack of knowledge most people have about the condition.

No, it is not like asthma. No, it isn’t like lung cancer. No, she never smoked. No, there is no cure. No, an antibiotic won’t get rid of her cough. No, it isn’t contagious. Yes, I am sure we have explored all treatment options. No, her doctors aren’t over-looking anything. No, we haven’t tried your weird, witch-doctor herbal remedy that worked for your mother’s brother’s cousin’s friend’s son, thanks though.

-Christina.

    
Facebook: https://www.facebook.com/TheCysticFibrosisJourney

Twitter: https://twitter.com/Christina1Kenny

Pinterest: https://www.pinterest.com/christinakenny1/blogging-about-health/

Recent TV3 Ireland AM interview: http://www.tv3.ie/3player/show/184/97433/1/Ireland-AM