My name is Rebecca Turner. I am 26 years old
and I have Spastic Diplegic Cerebral Palsy. I am a Postgraduate Communications
student and freelance writer. I love anything pop culture related and keeping
up to date with politics.
Cerebral
Palsy is more than having a limp or being in a wheelchair. There are a range of
secondary conditions that come along with it. As a child, I didn’t realise I
was having difficulty with everyday tasks. Things that had become second nature
to me were getting pointed out, with these being completely different to how
others would complete a task.
I
started to recognise the differences when part of my day at preschool was spent
hooked up to a nebuliser due to my asthma. Also, when I first went to school I
was given ‘special’ scissors as I was struggling with my fine motor skills. Similarly,
I spent half of my time repeating myself because teachers and classmates were
unable to hear my soft and breathy voice.
As
an adult, I have become very aware that I am not alone, and this is thanks to
the online disabled community. I have found this
comforting as I’ve never met people with the same type of Cerebral Palsy as me
before, so making these online connections has helped me feel validated.
My swallowing,
breathing, fine motor skills and anxiety are four conditions that impact me the
most day to day.
Swallowing
Swallowing
is a tough one. I’ve found that sometimes straws help and sometimes they don’t.
There are times where I think I am sitting up straight and I can choke on my
food. However, there are times where I am more slouched, and I don’t choke.
It’s like a game of Russian roulette.
Sometimes, the uncertainty of symptoms is scary, but I can’t spend my
time focusing on it too much otherwise I’d be anxious all the time. As for
dealing with these difficulties, it’s not fun but I can’t change it. I always
try to see what works best when I do choke and use that to help the next time,
with it being an ever-learning process of understanding how your body works.
Breathing
Lack
of breath support has been the thing that frustrates me the most. I either
sound like I have just run a marathon, this is when I excited about something,
or I get told by strangers that I sound ‘sick’ on a daily basis. I understand
the point of these comments, but they aren’t helpful or necessary. It made school
and work scenarios harder as my lack of projection had an impact on speeches
that I gave. It caused a knock to confidence, with this only being restored
when someone finally listened to what I was saying. I just want to be treated
just like anybody else.
Fine motor skills
Another
daily struggle of mine is fine motor skills. This impacts my life in a range of
ways: what my writing looks like, how fast I type, washing my hair, and doing up zips, buttons and ties.
Cooking and cutting is definitely not my forte. I would love to be able cook my
own meals, but I am too scared of burning myself and breaking hot plates full
of food. I’m so grateful to have a family that helps
me out wherever needed. A special shout-out must go to microwaveable meals,
thanks for the independence you give and you’re quite tasty too.
Anxiety
Anxiety is a condition that coincides with Cerebral Palsy. For me
personally, I think it came from insecurities and having to prove my worth in
order to feel normal. This was in many scenarios that ranged from doctors, friends
and in the workplace. Anxiety isn’t a feeling I’d wish on anyone, but having
Cerebral Palsy is like a full-time job. it’s not surprising that these feelings
of insecurity, fear and anger creep in and try to kick us while we’re down.
What has this taught me?
Secondary
conditions are a fundamental part of life when you have CP. I’d put them on an
equal level as walking, tight muscles and speech. This is because, if you
ignore swallowing, breathing issues, fine motor skills and anxiety, it will
negatively impact your quality of life. I understand that’s it’s tough and
easier to throw these to the side and keep pushing, but if you acknowledge them
it will help you manage your body.
If you want to follow me, my Twitter and Instagram
is @turnerebecca.
Have you ever had any experiences of secondary conditions? How have you responded
to comments from others about your disability? Let us know in the comments
below!
