Looking back at the young woman that was prowling through the bunny-filled garden that was the University of Kent, I realise now, how selfish I had been in a time of total independence. By selfish, I mean that I listened to myself and my body over other voices. It happened organically because for the first time, I was separated from my family, from the people that expected me to be a good girl, a wise girl. And the most important thing I recognise today, is that I needed that time to be careless and selfish to understand what type of life I wanted to fighting for. And ultimately, to see my limits be more than just words on a medical report.
in truthfulness, I still needed to be convinced that those limitations existed
In September 2014, I arrived in Canterbury as a loud Italian with a certain kink for testing the boundaries of social norms, and for the first time I would not have parents to limit my wildness. Very quickly, England became my land of freedom and expression.
When I was applying for universities I was in a British school in Rome, which meant that they helped you apply to UK universities only, which led to my first big decision. It meant I had to choose whether or not I would move countries, at 18, on my own. I had been travelling every three years for most of my life, so moving wasn’t scary. But I had never been alone in carrying the weight of my Cystic Fibrosis treatments. Not many patients live far from their hospital, but I had been able to due to the help of my mother and family. Now the question was, was I ready to move and leave behind my last safety net?
Opportunities became the deciding factor. I had done all of my schooling in English, and considering I wanted to go down a writer’s path, staying in an Italian speaking environment wasn’t logical.
As much as I was scared of moving countries and starting anew on my own, I was using logic to make a dream happen. I wanted to be free, but I also felt guilty about desiring that freedom. We all have that little piece of our heart that tugs at us when we are considering leaving our families for the first time, an action that ultimately says “the life you are giving me isn’t enough anymore”. And the reason why guilt had haunted me when making that decision, was because my family and mother had given me life. Protected me through everything. My mother had been my personal nurse since I had been diagnosed at 11 months old. I felt like I owed them something, and more importantly owed her love and gratitude.
Leaving allowed me to detach from the rules that had brought me up. A liberty that led me to wander for a while, make mistakes, experience things I had fantasised about for years. I truly let loose and learned how to party the English way. But what was so special about this new freedom, was that it led to me making my own rules. To create a life I was convinced was correct and fair to me. I thought that if I was convinced of my abilities and limitations, my desire to break the rules and escape would calm down.
Now, before I go on, something must be made clear. I am writing this because I believe I learned something in this journey, I learned about myself and who I was as a patient. In this post I am not claiming that what I did was medically beneficial, and I will be honest about that too, but I do not intend to fight for my right to choose my own medical path. So, if you are a health gatekeeper, I would like you to go read my post entitled Medical Disclaimer. My story is mine, not wrong, just different.
so, let’s try to keep judgment away from here, okay?
As a little background information; I have Cystic Fibrosis, with homozygous delta F508, which means I need breathing treatments and also have digestive issues. I have the fullest form of CF there is… what can I say, I like to make a statement.
I’m an extreme kind of gal
My daily medication includes many pills and extra vitamins to supplement my dietary insufficiencies, pain killers to manage the chronic pains, and aerosols to stop my lungs from gluing to each other, and finally on top of that I should be doing a lot of exercise (almost daily) to accompany the aerosols. So, in lesser terms, it takes up a lot of time and a lot of dedication. These two things would be very challenged by university fun.
Three big things changed, and I learned one incredible truth about my body.
My first confession will have to be that I let go of my breathing treatments and starting smoking weed every day.
Let’s start with the aerosol thing… I did something foolish. It was a careless decision. I am not suggesting it to anyone. But, here is my side of the story. I had never missed a therapy in my life until university, and my FEV1(in other words, lung function) was in the high 90’s. What I’m trying to say is that, I had good enough health to be able to risk it for a little while without putting myself in immediate dangers. But the truth is that I went from doing therapies every day, to doing it twice a week.
Why you ask? Well it’s simple and stupid, it took too much time.
In my first and second year I lived with friends and it was so easy to let myself get carried away and find myself at 4 in the morning, exhausted and intoxicated, ready to go to bed without having done my therapies. Because I felt healthy at 19, I would simply go to bed and forget all about my aerosols. My third year was a little different, I was single and lived on my own and I started to feel that I needed a little bit more support to keep up the life I wanted. I perhaps picked it up to doing therapies 4 times a week, not much truthfully. But by then, I had taken the habit to recognise a little shake before it became a problem, and in those times I womaned up and did better with my therapies, because I knew I needed to.
Again, none of this was wise. It was part of refusing to acknowledge that CF was truly a part of my worries. In my mind I was young and invincible. I’m not saying I’m weak now, but I understand I have limitations.
And if you want to know the stats about how this time affected me; in three years I lost about 15% lung function.
Now, let’s address the second part of my confession… in total honesty, I fell in love with weed. To me, it gave my body a break from pain. It didn’t block out the extreme pains, but on a good day, it would silence that little tremor in my brain that acknowledged I wasn’t crumbling but that something could threaten a downfall if I pushed too much.
You see, pain isn’t one-dimensional.
In the sense that it doesn’t debilitate you as soon as you feel it, but rather is the warning sign of something that could get worse, and slowly it builds and does. There are hundreds of little pains that we ignore because they are simply scars of somewhere your body took a hit, pushed through it, but was left just that little bit bent. For example, at 18 I caught a very bad lung infection that landed me in hospital for 3 weeks. My left lung suffered more than my right, and ever since I have strange muscular pains across the left side of my upper back. This pain increases when I do sports or whenever I am slightly sick, but on a normal day it’s manageable. There’s no pharmaceutical solution for this, so you just have to move on and deal with it.
There are also pains that are side effects of medication, remnants of chronic bruises, pains that labelled as “tolerable”, these pains are simply part of the diagnosis, part of the treatment. And I think that there needs to be a point where we stop turning to pharmaceuticals. Because in case you had not realised, those pain killers are part of the spark that starts problems. They are not harmless.
What I found with weed is that it quieted those small screeches of pain. Aches started feeling like a piece of fabric on my organs instead of energy controlling my body, I could feel its shadow, I knew it was there, but it didn’t bother me anymore.
On a mental point, it distracted me. I also mainly smoked with friends, so with my mind occupied and my body dimmed, I felt normal.
Past what it did for my pain, it helped my depression.
dark thoughts simply didn’t feel as heavy anymore
I don’t know how to explain it other than, it took my illness down a few levels of difficulty. It became manageable and stopped me from having crazy spikes of pain or depression.
Regardless of why, it was the correct choice for me and I do not regret that part of my life. But it is a part of my life that I get a lot of blow back for. To many people, a CFer should never smoke, for any reason. But the thing is that life is a rainbow of colours and shades. One rule will never apply to everyone. And if what I am doing affects only me, you shouldn’t have a problem with it.
To close this topic, I am just going to add another little disclaimer. I hope that anyone who reads this can see that I do not intend to glorify the smoking of marijuana. But that I do support and will voice my opinion about the benefits of CBD and THC in pain management.
The second big thing that changed was that I stopped taking digestive enzymes altogether. Digestive enzymes are a basic for CF patients as our pancreas has fossilised and stopped the production of enzymes at an extremely young age. It is a medication that you wouldn’t dare to question out of the blue, simply because no CFer with my mutation is told they can go without. I realised how detrimental it was to my health, because I started forgetting them. And one day I realised I hadn’t taken them for a week and it felt incredible.
there was a world of difference.
So, I spoke to my mother about it (remember she’s my personal nurse and knows everything about my illness) and I told her exactly what had been going on and how it had affected me. She couldn’t believe it because it didn’t scientifically make sense. So, I decided I would not take them for a month and see how it went. After a month, I was feeling like a Rockstar, barely hindered by my pains, and I had cut down my hours spent on the toilet by half. I felt in charge again.
It still wasn’t logical to my mother’s medical knowledge but when I went home for the summer in my first year, I showed her. Did three days with, my life was hell, I was spitting at her “do you see? I know my body.” I was furious that she hadn’t believed me. But after seeing it with her own eyes, she couldn’t deny it.
Revolutionising my treatments like that did come with a cost at the beginning. I was around 73/74kg when I left for university, and I went down to mid-fifties when I made that switch in my second year. I was very skinny for about a year and then my body started putting the weight back on at a slow and regular pace. It took me about 3 years to get back to a healthy and stable weight.
But I am so grateful for myself when it comes to this battle. I’m grateful because I had the courage to trust my body completely.
I hadn’t been scared to throw myself into this challenge because I had my mother, that at the end of the day, admitted I was right. She acknowledged that what I said was true, and that gave me the strength to do what I had to do.
I definitely eat more than the average human, but that’s what I need to do to keep my own health going, and that’s okay.
The last big change that happened was that I doubled, and sometimes even tripled, how much exercise I did compared to my teen years. My first task at university was to find the dance society to continue my first and most important hobby. I joined the dance society and the salsa society instantly. The salsa society was just for fun, and I didn’t go very often. But when I joined it was always filled with laughter and cheakiness!
In my first year I joined two competitive dance teams within the dance society. In my second, I even became the contemporary teacher and competition choreographer, which intensified how much dancing I had to do on my own to prepare for the weekly classes and team rehearsals. On top of our usual classes, during one term every year, we prepared a showcase where anyone could create their own piece. I partook in other people’s pieces and choreographed my own all three years. And they are my most precious memories of university. This also meant that for three months, every year, I ended up doing over ten hours of dance per week.
On top of all these dance classes, Canterbury was small enough for me to walk everywhere. Most days were spent on an adventure in some park and most nights were spent dancing with friends until the early morning hours. I physically never stopped. I think this new exercise regime really supported me through my bad decisions, and it allowed me to have the strength to bring my health back up when I stopped being foolish.
I had definitely underestimated the power of exercise and the medicine that it actually is.
an absolute lifeline.
Now these are the things that I knowingly and consciously changed because I didn’t feel the rigidity of my parents’ expectations of how I should manage my own illness. It was fair that they were the ones to teach me how to deal with it in the first place, but at 18 it was time for me to start making my own decisions. You see as a sick child, being micromanaged and discussing all your issues as a family is the norm, and that’s okay. But that can have an effect on our own confidence and ability to decide for ourselves.
as a 3-year-old you don’t know why you’re in hospital so much, so you end up realising fast that you don’t know many things, and doubt settles in
Even if parents do not intend to pressure you into doing something, when it comes to health, the pressure is there because you see their worry, fear and their love for you. It isn’t because they judge, it’s because they want to protect you. And you protecting yourself, will inevitably look different and ruffle some feathers.
Now, about the truth I discovered… I would like you to take a step away from medicine and all that is facts because what I learned was something about our emotions and holds no scientific proof, but I need you to understand how true and important it is regardless.
What I learned, was that love and laughter fuels your body with a strength that you cannot quantify.
I learned that joy was actually the strongest tool to fight death, illness and limitations. At university I filled my days with friends, relationships and partying without giving my medical status an instant of thought. And often my illness was rendered invisible, powerless against my life.
distraction was and is the best drug
My university years were a time where I felt my pain, but only when I had the time to. My body pushed through all the boundaries to avoid pulling my mind back to my secret reality. The pain was only visible at home. When I stepped out of my front door my tortured shadow was left behind. Waiting patiently for me to return. It felt like the most important detachment I could ever experience. There were multiple times where it caught up with me and I would have to mend the bruises of a twisted infection, but those were instances and instances don’t matter in the long run.
My friends gave me life, my partners taught me passion, and the music made my heart pump as if my body was made of a thousand constellations.
So, my point is that something happened when I was with friends and loved ones, where my CF was just not as loud. It makes no sense, but the days I stay home are the days where there is the most pain. In the past, I have left the house for a night out with a migraine, and have no memory of feeling that pain in the club. It’s not logical, it’s not a solution either because reality does get you down sometimes, but it definitely is a little magical.
it’s warrior magic
The reason why I am writing this, and trying to be as vulnerable and honest as I can, is because I see many CF parents be suddenly alarmed when teens go through a rebellious phase where they refuse therapies. Well, I’m here to say that this moment of rebellion will be educational, and it will be temporary.
This is for those parents and loved ones:
Realise that we never get a break. We never get a finish line. We just get an ending. And there’s nothing anyone can do about that. So, within this life of maturity and responsibility from a very young age, there needs to be a point where they can breathe and let go. To see what their life can be like. To see the cost of it. But also, to have those memories to hold onto when they are in a hospital bed with a medically certified venomous juice pumping through their veins.
And even if our bodies aren’t made to do their thing without drugs, there needs to be a time where our mind is allowed to think of something else. Healthy and able-bodied people are constantly doing unhealthy things and not caring because they know they are still young. We must be given some of that freedom too.
Please, parents, see that your child is trying to survive the life they have been given. Accept that there may be times where they do things you do not agree with. Acknowledge that you cannot force them to think exactly like you. And finally, allow them to create their present. They can’t change the past or escape their future. The present is all we have.
Have faith in your kids that they are smart enough to listen to their bodies and know when the danger is actually in front of them. Realise, that when the time comes for them to fight this illness, they will want to. Because they will want to keep living.
See this as their desire to live, not as their compliance with death.
I will leave you with something my mother told me when I explained why I made the choices I made at university.
“I know you had to do this. I knew you had to let go and see how far you could go on your own. I had no right, during your childhood, to let you not do treatments or be careless with your health. I was responsible for your health and I had to do my best. It was never my right to be lazy about your therapy. But I also forced you to do it because I wanted you to be as healthy as you possibly could when you needed to go find your own freedom. I wanted you to be able to live freely for a while, without putting yourself in immediate danger. If anything, that was the least I could give you.”
A wise woman.
ps: I apologise for the photo spam… I was feeling a littlenostalgic.
Tell me about what you learned at university, or how you came to find your own independence.
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76 days of isolation and many more to come… as challenging as it is, I must admit it has felt peaceful.
Let’s bring it back to when the first spark flew.
When I was growing up I remember being told off for being angry, easily triggered and quickly overwhelmed, and none of these comments were exaggerations. However, I can also say that it wasn’t wrong of me to be so angry, and it definitely wasn’t wrong of me to express it. I just needed to learn how to use it …
What threatens my life is within my own body. It is simply not capable of functioning on its own and I am kept alive by a robot army of medicines, it helps, but my body will never be independent or free. And all of this is invisible. In a way it was real only to me, so I hid it even more…