Strength
Would I describe my body as strong? Definitely not. I am
constantly asking my housemates to open jars for me. However, I do know that my
body is strong because back in May I was making it go to dance classes whilst
it couldn’t properly walk. And now, less than a year later, most of the time I
am feeling almost as healthy as I was before I even started showing symptoms.
Yeah, maybe I’m not as fit as I was before, but that’s just the fault of my own
laziness for not taking myself out for a run. I think that the human body is
amazing. And maybe it took me to get ill before I could realise that, but it is
something I will hold on more than ever throughout my time being healthy again.
People say that becoming ill makes you stronger. Controversially, I would like
to disagree with this statement. Because I think we already have this strength
within us – we just haven’t needed to use it yet. Perhaps we learn courage from
when we get ill, but strength is always there inside ourselves. I mean, considering
the amount of excrement that was coming out of me, my insides must have been
very strong.
It's been a while since my last blog; I’ve been so healthy
recently that I didn’t think I had anything worth saying. But when I thought
back to when I was first diagnosed and my body was extremely frail, I
remembered someone from dance reaching out and telling me that they had been
diagnosed with colitis just over a year before – and I was so amazed by how
strongly and beautifully they were able to dance after their diagnosis! At the
time, this seemed impossible for me to achieve. However, only nine months after
my diagnosis I can proudly say that I have been able to achieve things I
would’ve never dreamed of achieving this year – even before my diagnosis – and
I would like to credit the experience of my diagnosis for providing me with the
motivation to cling onto and attempt with passion and diligence every
opportunity that has come my way. I say ‘attempt’ because I’d also like to
highlight that I have faced an equal amount of rejection to my accomplishments
this year, but I think rejection and accomplishments come hand in hand and if
you never try things then you don’t stand a chance of achieving them.
In case anyone is in the place I was during my diagnosis
process, I would like to outline some of the things I am most proud to have
achieved and also some of the things I have embarrassingly failed at (because I
feel like these are an embodiment of strength and equally important in terms of
learning new things) within the first nine months of my diagnosis, whilst
coping with learning about my symptoms and experimenting with different
treatments. Within this I will also explain which symptoms affected me and how
I overcame them. I’m very open about my intimate experiences with boys in this
blog, but I think that if it could help just one person, then it’s worth
sharing.
Boys (multiple failures)
I’ve met a lot of different boys this year and none of them
have seemed to last very long – but I’m not here to rant about my boy troubles,
I just want to discuss how my symptoms have affected my experiences. My mum
suggested that perhaps I shouldn’t tell boys that I have Crohn’s straight away
in case it puts them off, but my immediate response to that was I don’t want to
be ashamed of my illness – and I still stand by that. Also I have the link to
this blog in my Instagram bio, so boys will instantly see I have Crohn’s if
they follow me, furthermore, my account and bedroom are flooded with Clean
Shaven Pubes posters, which often requires explaining (I will cover this
later). I believe my experiences with Crohn’s demonstrate bravery and strength.
I do wonder if the fact I have been so open about it, and written a play called
Clean Shaven Pubes can be intimidating or off putting, but if they can’t handle
that then they are definitely a dick. The only reason I dislike telling boys
about my diagnosis is when they google the symptoms and see weight loss.
It’s hard sometimes for me to feel proud of my appearance
when I can’t help feeling that the only reason I am the size that I am is
because of my illness. However, I constantly remind myself that I have worked
hard to build my body back into shape and that I am very much in control of it
at the moment. On the other hand, I don’t want a boy I’m with to see the
symptom of weight loss and perceive the shape of my body as a result of my
illness – I feel very insecure about this. I usually tell them that I did lose
a lot of weight but I have put most of it back on now; this isn’t necessarily
true – I’d say I’ve put less than half of it back on, but I want them to know
that I have taken ownership over the shape of my body. I had a boy ask me once
if my tits shrank when I lost weight – he didn’t ask in a rude way and I felt
comfortable with him asking as we were very close and it was only out of
curiosity. I just told him that they were bigger before. Another time a boy
started looking through my Instagram whilst I was with him and he asked me what
Crohn’s was, so I just said that it was an illness; he saw the weight loss
photos but he didn’t comment on them or ask any further questions. I’m not
ashamed of my body; I’m really proud of it and grateful that my womanly figure
is growing back, and I feel very comfortable being intimate with boys.
I have managed to go to a restaurant on a date where I was
able to eat and the food didn’t make me throw up. My appetite has been a lot
better recently, so unless I’m really nervous I think I should be able to
handle it, however if restaurant food is particularly rich it can still make me
throw up sometimes, so I guess I should just take gum with me just in case. In
terms of needing the loo when I’m with a boy, luckily my bowel movements have
calmed down a lot so I haven’t faced any issues surrounding this recently.
However, before my diagnosis, this was something that used to worry me. If I
was at a boy’s house then I just really hoped that I would be able to hold it,
and luckily this never happened, but I just thought if worst came to worst then
I’d have to take a shit in their toilet.
My infusions are only causing me a couple of mild side effects at the moment, but both of these have been noticed by boys. The first side effect is bleeding gums. This has improved a lot since I last saw my dentist and they fixed it for me, but back before I knew it was a result of my infusion or knew why it was happening, there was about a month when my gums would just bleed loads every time I cleaned my teeth. One night I completely forgot about it when I was staying over at a boy’s house. He had a spare electric toothbrush that he said I could use; I hadn’t used an electric toothbrush in a long time and I brushed my teeth right in front of him and blood was literally pouring out of my teeth and I’m pretty sure it permanently stained his toothbrush. He was chill about it though, he seemed to find it quite funny. The other side effect I’ve been suffering from is my hair falling out a lot easier. I haven’t gone bald and my doctor assured me that I definitely won’t, also you wouldn’t be able to tell by looking at me, so, like the bleeding gums, it’s nothing to stress about if you do have to have infusions of infliximab. However, there was a stage when it was shedding everywhere; having had long hair my whole life, I don’t tend to notice it, but the same guy as the toothbrush guy did complain about the amount of hair that I left behind in his bed.
Clean Shaven Pubes
Writing and directing Clean
Shaven Pubes is definitely my proudest ever achievement. Before my
diagnosis I was way too afraid to even attempt creative writing – in my
opinion, the most impactful works of art are crafted through honesty, however
the idea of me, myself, writing down my feelings for other people to read
seemed unbelievably embarrassing. Clean
Shaven Pubes is a play about university students living with undiagnosed
invisible illness and disabilities and was performed at The University of
Birmingham on the 8th-10th December and I definitely
didn’t shy away from writing my deepest embarrassing and most personal moments
from my second year at university into the script (apologies to any boys who
may have made it into the play).
I wrote this play over the summer when I was still too ill
to leave the house for long periods of time and I thoroughly loved writing it
and found it very therapeutic, some scenes I wrote ended up being very
emotional and I was quite surprised by what came out of my head. I also gave
myself the challenge of writing the whole script so that any character could be
played by any gender, which seemed like a stupid idea when I started writing
because it was really hard, but I committed to it because I wanted to
demonstrate that invisible illness can affect anyone.
I think the hardest thing I struggled with when directing
due to my symptoms at the time was my energy levels. I realised when working
with a cast of twelve that if I wanted them to perform with energy and
enthusiasm, then I also need to demonstrate that same level of energy as soon
as they walk into the room from myself. This can be very hard when you have low
energy levels but I just made myself push through and do it because I really
loved working with everyone so much. I also was struggling with my appetite and
didn’t want to, or had time to go food shopping or prepare my own food in
advance before rehearsals (we rehearsed from 6-10 three nights a week and I’d
usually come straight from rehearsals for my drama production module), so I
just ate a lot of subway, which was expensive, but it had to be done.
Clean Shaven Pubes made £442.80 in proceeds for the charity
Lovebrum, as well as raising £104.22 for the charity Crohn’s and Colitis UK. Furthermore,
the society I put on the play with, Infinity stage Company, just won the Guild
award for Society of the Year. The title probably wasn’t the best idea when it
comes to writing my CV, but it’s done now.
The Learning Lottery
The learning lottery was a drama module that I took last
semester. In a group of twelve with a professional director, we got to put on a
play worth the equivalent of a dissertation all squished into one month. I
chose this module before my diagnosis and didn’t stress about it too much until
I turned up to the introductory speech – our lecturer told us that for this
month it was imperative to sleep well and eat breakfast everyday so that we had
plenty of energy because it’s an extremely intense module and we cannot get ill.
At this stage I was still suffering from extreme tiredness and loss of
appetite, so the module suddenly seemed very intimidating.
I had a meeting with the head of drama where I told her
about my recent diagnosis and that I struggle with my appetite so rarely have a
breakfast in the morning and tend to just eat at my own time. I also stated
that I suffer from extreme tiredness so will need to be able to sit down and
have a rest at times. I was then permitted to eat in rehearsals whenever I wanted
and to be able to come in late to rehearsals when I needed too. I definitely made
the most of coming in late, particularly for the 9am sessions. It probably
looked strange to the rest of the class that I would walk in half an hour
late and just eat at random times or just sit down whilst everyone was standing
and the director wouldn’t say anything, (I’d also lie down on the library sofas
and take a nap during our lunch hour) but I didn’t really care what anyone
thought and within a couple weeks, I had told the whole cast that I had Crohn’s.
There was a moment before everyone knew, when the director suggested that as
part of the show, my character and a few others made sandwiches on stage, but I
put my hand up and said that I’d prefer not to work with food and no one asked
any further questions.
Despite the symptoms I had to overcome during the rehearsal
process, I managed to perform the show wearing high heels (I even did a sack
race in the heels) and then used the heals as a weapon in a fight scene where I
did a massive ninja leap through the shiny door at the back of the stage. I
achieved a 1st in this module as well as making an amazing group of friends.
Dance
It’s fair to say I have faced a lot of rejection from
auditions with university societies this year, this is nothing to do with my Crohn’s
– it’s just me not fitting the roles/being good enough. The first thing I auditioned
for and got rejected from was to be a dance teacher back in September. I
threw myself into this having done no exercise or dance since I was
hospitalised and I wasn’t even sure if I would be able to dance for a whole thirty-minute
audition without having to have a sit down and catch my breath half way through.
Despite not getting the teaching job, choreographing the routines in preparation
for the audition was an amazing way to get myself dancing and exercising again
over the summer in a creative way. Also the experience in choreography and
teaching from the audition came in useful for my supermarket disco dance nausea
scene in Clean Shaven Pubes.
I am extremely happy that I am properly able to dance again
now without feeling tired or out of breath, because I missed it so much when I
got ill. I have just danced in five advanced dance numbers for the dance
society’s annual dance show. My energy levels are miles better than they were a
few months ago, so I am now able to get through the whole day without napping
and having dance classes in the evening was a great way to get some exercise
in.
In one of the shows I did suddenly start feeling really
queasy during the interval. I didn’t want to throw up, so I held it in and
started getting changed into my new costume really slowly – but half way though
getting changed I then declared that I was going to go and throw up. My housemates
then reminded me that I had to put some clothes on first, so I quickly finished
getting into my next costume and ran to the toilet to be sick. When I came
back, it was only a couple of minutes before I had to go on stage and everyone
was already waiting in the wings, so I just went and danced. I was sad that I
was ill during the dance show, but I believe that bodies are strong and it
didn’t stop me from carrying on in the slightest. Even small moments like that remind
me that everyone has so much strength within themselves and we should feel
proud of the little moments when our strength shines forward.
Finally, I’d like to end this blog with an extract from our pubes scene in Clean Shaven Pubes. People often asked me why I gave it this title, so here’s the reason why. Also I’m really proud of this scene; it explores reactions towards undiagnosed invisible illness, beautifully performed by Iyari Martinez, Emma Barclay and Kaleia Hills.
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