I tell him all about you. I laugh at your attempts to set me up with a Starbucks barista who really just wanted to take our order and never see us again. I cry at your pain. It is all mine. Your moments of pure joy, were my moments of pure joy. Your pain cut through us both like a sharp knife. I tell him so I won’t forget. I tell him because one of the saddest things in the world, to me, is the fact you will never meet him and he will never meet you. He would make you laugh. He does that self-deprecating, underdog thing you would have rooted for. He would have admired you in every way because you are the literal meaning of the words ‘strength’ and ‘determination’. You would have debated and playfully argued. He would have feared you. And loved you. I tell him about your past. I tell him about your journey. I tell him about your final destination but I tell that story with tears strolling down my face and onto his.
I tell him because with each passing day you get further from me.
I tell him because I am scared.
More than anything I am petrified that one day I will wake up and I will forget how you would sip your tea.
I tell him because you were mine and now he is too.
Most of the time I feel empowered by my life experience as a researcher. I feel like it gives me an insight that others will never comprehend.
It enlightens me in ways others will never be privy to. It makes me more well-rounded.
I can help educate others into the ins and outs of living with Cystic Fibrosis. What it looks like. What it feels like.
However, on that random day my emotions take over. I can’t remember what professionalism looks like. I just sit there and nod. Inside, I’m dying. Normally, I can separate my own experiences from formal meetings, not today. Today I swallow hard and fight back the tears. I want to scream. I’m not sure why today is different from other days, I just know it is. I want them all to stop. Stop talking. Just stop. Every word wounds me. Every single word leaves a gaping, oozing wound. Nobody has noticed. They don’t notice I’m bleeding. They are oblivious to my pain as I sit there and nod in agreement. I sit there, silently bleeding. It’s only 9am and I am already empty. I have nothing left to give. Nothing can comfort me. It’s 9am and I am wishing it was 6pm. I’m wishing I could go home and cry. Go home and mourn. Go home and tell my dad I just can’t do it. Go home and grieve.
Then, suddenly I recall why I’m here at all. I recall her strength, her courage, her unwavering optimism and I suck it up.
Lab is calling, research waits for no-one.
It has been 7 months.
Actually, I am not even sure if that is exact as I can’t bring myself to do a count. We have yet to produce an official memorial card. Everyone is always asking if they can get one and every time I have to tell them that I actually haven’t made it yet. The first question I get is ‘why?’ The answer is always the same ‘I have been too busy with work’.
Total crap. I could have made it anytime but I can’t. I just can’t. The prospect of looking through all of those photos, videos, letters and poems makes my heart sink. It is a feeling that takes over. Once you let it in, it drowns you and I have only just learned to swim again. If I let it in even a little the flashbacks flood my mind, taking up all the space. I go right back to that day, that awful, horrific day. The day I lost my best-friend. The worst day of my life (apart from the day I got that weird fringe that made me look like a young, German boy). It shoves out all the light and fills me with darkness.
I haven’t made her memorial card yet because I simply cannot bear to. Making it makes is just too real and I am not there yet. I am not ready to admit that this is forever. I am not ready to give up the fantasy of her returning and embracing me like she had just had a long hospital stay.
I hope one day I can open the photo albums with peace in my heart. I hope I can re-read her old text messages and recall the best and the worst memories. However, that day is not today. I don’t know when that day will be. Maybe tomorrow, maybe never. You don’t go through a trauma like that and emerge from the rubble totally fine. It takes time. It takes lots of things, things I don’t have yet.
For now, I will take it in bite sizes. Little bits here and there. Let the acceptance creep in. Let the grief creep in. Trickle in, bit by bit, drop by drop.
“When a stargirl cries, she sheds not tears but light.”
― Jerry Spinelli, Stargirl
My mum once told me that anything worth having would never come easy. She was right. She was always right.
It would have been easy to escape it. Run away. Quietly move on. Silently drift away, enter a new world. I could have immersed myself in a different world. A world that isn’t as close to my heart as this one. I could have had a job, not a passion.
I could have spoken about my job like it was just that, a job. A nine to five. There could have been it and me. Two separate entities. Two uninvolved things.
I chose not to. I chose to have a passion. I chose not to let go of that passion. I chose to have a career that was woven into every fibre of my being. I swallowed hard and made an instinctual choice. A tough one. No hesitation. No pregnant pause. I took the road that would inevitably be filled with questions and statements that will make my heart drop. The road I chose might sometimes be dark. It will sometimes be lonely. I might be scared. I might even feel broken at times and lose sight of why.
But as my mum once said anything worth having won’t come easy. A career in Cystic Fibrosis isn’t a job, it is part of who I am at my core.
Throughout my lifetime I have lost many. I have seen my friends disappear because of the same disease that is trying to take me. I often think of them and sometimes I feel guilty that I am still here. They should still be here. They should be here with me, with their families, with their children. One particular friend of mine once reminded me of myself in a lot of ways but more accurately she reminded me of a person I hope to one day be. A person I would admire for years after, a person whose bright face would come to me in dark times and tell me to keep going. She too had a daughter, although much younger than mine. Her name was Lynn*. She was a fighter. She was one of those women you just look at think ‘how are you doing it? How are you that strong? Teach me’. Lynn and I grew closer with each hospital admission we shared together. I learned quickly that we had a lot in common. She was younger than me and had a beautiful daughter Catherine*. Lynn didn’t have it easier. She was stronger than anyone I had ever met but everything was against her. The father of her daughter was not a nice man and made her life a difficult as it could be. This broke my heart. Her life was already unfair enough. She didn’t deserve any of this let alone added stresses like him. She was a trooper. I remember one hospital admission we shared together. Lynn was sick. Very sick. The doctors told her she was dying. She had very little time to live. Days, maybe weeks. This crushed me. I sat in my room feeling miserable that I might lose another but I felt angry at life because a woman like her doesn’t deserve any of this. Whilst in the pits of my wallowing, my thoughts would be interrupted by her beaming face at my door. First of all, how is she even walking this far? How is she still smiling? How does someone so deathly ill look so beautiful and illuminated? She was pale and thin but her smiling face made you forget that she was even sick. She had an air of warmth and strength and I was always in awe of her. ‘Would you like a cup of tea?’ She would ask catching her breath as she stood in my doorway, her frail body leaning heavily against the door-frame. Is she serious? She has been given the worst news anyone could ever want to receive and she is offering me a cup of tea? What? I can barely come to terms with her news and she is going on as if nothing is wrong? Is she in denial? I soon learned she was not in denial. She fully understood the gravity of the situation she was in but she knew that it was beyond her control and she kept her chin up. If I knew I had days would I offer to make my friend tea and laugh at an episode of friends? I don’t think so. How could I? How could she? What a woman. That night she sat me with for three hours. I learned so much about her life, her loves and her outlook. She told me tales of her little one. She spoke of precious time was and how badly she wanted to be here for her daughter and watch her grow up. We broke down after the lovey chit-chat. She sobbed heavily and for the first time her face wasn’t smiling or illuminated, it was broken. We had so much in common and the paralells of our situations frightened me. Her breaking down like this frightened me. She was never that kind of girl. She was strong. Stronger than me. She didn’t cry however now that she was I was petrified. Petrified for her and petrified for myself. She spoke of how, despite her frail state she went shopping for a gift for her daughter’s birthday. She didn’t go to buy her daughter’s ninth birthday present, she went shopping for her eighteenth birthday gift. A milestone birthday and one she would miss. How can life be this cruel to someone this kind? Each day, however she lost a bit of her battle. The disease began to win, slowly but surely. I could write endlessly about how devastating this was for me. How soul-destroying this was to watch but that is not what is important here. What I think and feel aren’t important. What did she think? How did she feel? Was she scared? If she was she sure didn’t show it. She continued to light up every room she entered despite growing weaker and giving into the heavy fatigue. Her family were heartbroken. Her mother was her biggest supporter. Her mother adored her. It was beautiful and heart-breaking to see.
Eventually Lynn lost her battle. Cystic Fibrosis got her. But it didn’t win because to this day she is remembered as the light that lit up the lives of many. She was a mother. She was a daughter. She was an inspiration. She was the epitome of strength and her smile shoots through my mind in my darkest and brightest times.
Rest in peace Lynn. Thank you for all that you gave to me. You made me want to be better. A better mother. A better friend. A better person.
“In the depth of winter, I finally learned that within me there lay an invincible summer.”
― Albert Camus
*All names have been changed for privacy reasons
When most girls my age think of the not so distant future they think of the typical milestones. They think of graduating with the post-grad degree, getting engaged, getting married, progressing in their career, having children etc. I think of all of those things too. The only thing that makes my day-dream a little different is I have to remind myself not to include my own mother in them. I think of all of those upcoming precious moments I hope to have in my life and I can’t even include my best friend. I have shake myself a little and tell myself to ‘get over it’ or ‘suck it up’. I can’t imagine it the way most might. I can’t imagine my mum’s beaming face in the crowd as I hold my PhD in my hand. I can’t picture her embarrassing me in front of everyone, waving a camera in my face. I can’t envisage her yelling my name and my face turning eight shades of purple. The things most people want to forget I want to have and don’t want to do without. I know it isn’t healthy or realistic but sometimes I allow myself the fantasy day-dream. The one where I get engaged and the first person I call is my mother, you know? The one where I find out I am pregnant and my mother bombards me with advice and lectures me on pre-natal vitamins. The dream where I step out in my wedding dress and my mother tells me that no woman has ever looked so beautiful. The passing thought where she gives the most heart-warming and inspirational speech at my wedding and everyone cries and laughs. The dream where she holds her first grandchild and compares who he/she looks like. I will never have these things, these things that I desire most will never be mine and somehow I have to come to terms with this. When I say things like that I realise how selfish I am. ‘I have to come to terms with this’, I am not the one dying, I am not the one missing these things, she is. That brilliant woman who sacrificed everything for me and to have me will miss the best parts of me. How is that fair?
So, most of the time I think about something else, something less important, something less earth shattering and something less distant. Something that includes her. Something like today or hopefully tomorrow.
“To describe my mother would be to write about a hurricane in its perfect power. Or the climbing, falling colors of a rainbow.” —Maya Angelou
*** You can follow us on Twitter @Christina1Kenny to follow our journey***
One of the main thoughts that has plagued me since the serious and swift deterioration of my health is what my daughter’s life might be like after I am gone. Right now she has the world at her feet. She is intelligent, funny, beautiful and the world is her oyster. But I have always supported her, pushed her in the right direction. Made sure she was on the right path and I am confident in her but what will she be like when she doesn’t have that support? I know what I want for her but I won’t be here to make sure it goes as planned? I won’t be here to make sure she gets her happy ending or her dream job or her bright future. Will she get everything she has dreamed of? Will she write that book she has always talked about? Will she get married on a little hill in bare feet like she has always talked about? Will she have lots of children in a big, country house where the sun always shines? What if she’s sad? Nobody can comfort her like her mum can. Will she tell her children about me? Will she forget me? Will her children think of me as their grandmother? Who will wipe her brow when she is in labour when her husband is saying all the wrong things? Who? Just who? I feel scared. I feel anxious. I won’t be around for my daughter. I won’t be able to fix anything or make it better. Am I being ridiculous? She is a grown woman. I have raised her well. She is wise beyond her years yet I still worry about who might drive her home if she has her wisdom teeth removed one day. I can’t help it. I am a mother. I will never stop worrying or caring, even if she was 50. Today though, today she is not 50. Today she is 21. A baby. Unsullied by how bad the world can be. It is my job to be there as she sees the darker side to life and just how dark it can be.
Sometimes I sound ridiculous, I know I do. Other days I think my points are totally valid and any mother in my position would be breaking her own heart, just like me. This is life though, isn’t it? This is what parenting is. Parenting is raising your child with the values you feel are important, necessary to being a well-rounded person who can stand on their own two feet. I think I have done that. I hope I have done that. But it isn’t enough. She needs me. Or maybe I just need her. Maybe this is really what it comes down to. Maybe part of me is in denial that she actually won’t need me. She will thrive, flourish even. Maybe that is what scares me. I don’t really know. Being a mother is complex. I can never take away my emotions in order to make any kind of logical assessment of what is going on inside my own head. I am plagued with heady emotions. I don’t know what I think. I know what I feel though and I feel sad. I feel like I am breaking my own heart. I feel like this illness is breaking my heart. Sometimes, I think the harsh reality of life is breaking my heart.
“So we beat on, boats against the current, borne back ceaselessly into the past.” | F. Scott Fitzgerald, The Great Gatsby.