What is it like to have a PA?

Since coming to university two years ago I have had a Personal Assistant (PA) to help me with various daily tasks which has allowed me to live independently away from home, attend university and socialise with friends. It feels very odd to think they have been in my life for only two years as I cannot imagine life without their support as it has allowed me to do so much. It definitely is not part of the normal university experience, but it has been fundamental in my experience.

But what is it actually like to have a PA?

Over the years I have adjusted, and it is probably more of an adjustment then you think. You get very close to who ever is supporting you, and it is probably fair to say they see you more then they see their own family sometimes. To begin with it can be so hard to define the role of a PA, with them being there to help you but not constantly look after you. On the other hand, their role may differ slightly from day to day depending on what is required. On Monday I could be in university, Tuesday out with a friends, Wednesday I could be doing university work, Thursday is a charity event, with Friday watching films and resting. The week after could be completely different!

To begin with I did find it slightly strange. Having to organise timings if it was not normal hours for them to work, letting them know everything that is in my diary so they too knew what was happening and coordinating all other aspects. It is almost like having another (more functioning) version of myself who is involved in everything I do. If I am having a day completing university work then they do too, just in the form of reading or doing something to occupy themselves. If I am having a long day seeing people, then so are they. Despite it taking time to get used to, it was never a negative.

A Personal Assistant is my hands when they are tired or cannot complete a task, they are my legs when I stumble or trip and they are my eyes when I cannot see something- but is more then that. They become a friend, someone you trust, your independence and your person in crime! This person is an extension of yourself and a friendship that is like no other. For these reason it is no easy task to pick someone. However, you tend to know pretty quickly if you have found someone who will do a good job. You rely on these people to live life to the fullest. Probably holding on to that lifeline of independence a little too much. Despite it sometimes being internally frustrating when you do just wish to do things by yourself, I am so grateful to be able to have so many experiences and memories which could never have happened without a PA.

In the beginning you are getting used to each other. I am getting to know them as a person and they are learning what I need help with. This process goes on until it is almost instinct in terms of what things they help with, this is when you know things are right. There is definitely a level of flexibility from both parities, with this being one of the qualities you look for when employing someone. However, people who choose to be a Personal Assistant are a remarkable set of people, and I honestly don't think they get enough credit. They see me on my good days when I have fun at parties (or decided to go trampolining...) but they also see me on my worst days- and they're okay with that. You sign up to be a puzzle piece of another person's life, you sign up to make another person's life better. Being a PA is so varied and they just come along for the rollercoaster of having a disability.

Yet this is something you need to get used to. Before coming to university it was only really my family who saw the bad days, everyone else merely got a slightly edited version. It is not like I mean to edit myself, it's more about seeming 'fully functioning' and not how I sometimes feel! I guess if you are out for a few hours it is possible to keep going and the 'crash' when you get home. Unfortunately, you can't hide from someone who sees you so much, even in the house. To begin with I did find it difficult. It is normally only people I am closest to who see me in a blanket fort with cushions, fluffy socks, hot water bottles and Disney films. When a PA starts they are not someone you are close to. You have to learn to be open to the fact that it's okay, even if you have the instincts to not show pain or discomfort.

Having a PA allows you to forget certain elements and restrictions of your disability and just get on with life. They have aspects of your life sorted so you really can focus on the things you can do.

~ Chloe x

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