Tag Archive for: university

I graduated!

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Last year, I graduated with a First Class degree with Honours in Fine Art from Sheffield Hallam University!

I had my first baby when I was 19, I’d had a tough few years and university wasn’t on the cards before I got pregnant, but once I was becoming a mother, I knew further education would be a long way down the line, if ever! (Obviously for lots of people they parent and study side by side and bloody well done to them, it just wasn’t for me!) I then had two more babies and focused on being a mum.

As the kids grew older, I had various weird and wonderful jobs. (I will do a post about my varied career or you can have a peek at a post I did recently on linked in about the difficulty in finding work as a disabled woman) I never thought university could be an option for me, I had left school with decent GCSE’s but then attempted college and A-levels twice, leaving each time as I was unhoused and its hard to study when you’re not sure where you are sleeping. But as life moved on, I was happy, I was working and life felt good, I had a job working for Scope, the disability charity, that I LOVED and I also had my own radio show on BBC Radio Sheffield.

Then in early 2020, I was facing another major surgery, it was a big one and would need a long recovery, I made the decision to leave Scope and headed into hospital. I was incredibly unwell after the op, my kidneys failed and I was in and out of hospital. I planned to start working for my husband Timm and our photography studio, working as studio manager. Then as we all know, Covid hit. I was classed as clinically vulnerable and very scared, and then the BBC decided to cull all double headed shows to reduce the risks for people working in the studios. The photography studio had to close down and suddenly, I had no job at all and was scared to leave the house!

One day during the long lockdowns, I said to Timm “If I won the lottery, I would go to university”, he laughed and asked what I would study, I told him Fine Art and he asked why would we need a lottery win to do that, I ventured that I couldn’t not work and bring in money and that university seemed like a luxury. He thought for a while and then said that we had no work, that the world was closed down and we had no idea what life would bring us, that we had learnt that life can be cut short and we need to seize the day! Within a week, I had enrolled on my course to start (online) a few weeks later! I had enough life skills and experience to overcome the lack of A-levels and I was heading for art school! Not long after, Timm decided to enrol too and he would begin a Film Production degree at the same time. We applied for student finance and away we went!

Though it was tough heading into education after so many years and being 39 when I started and one of the oldest people on my course, I loved it. I adored learning, reading, exploring and discovering. Creating and making and thinking outside the box was a joy. And though there were times where I worried I wasn’t good enough, after three years and meeting some of the greatest people, after three years I graduated with a first class degree with honours.

In my third year, I started the year strong, with great ideas of my final exhibition. All my art practice had been around accessibility, I had created photography projects around the feeling of being bound and trapped by chronic illness, I had exhibitions of my work highlighting the inaccessibility of hanging heights in galleries and my third year project was to look at the art spaces I could not enter in a wheelchair. But it wasn’t to be.

I began to feel quite unwell, I was in a lot of pain and unable to eat much. I lost two stone in 6 weeks and ended up in hospital, my bowel was trapped in a hernia and I couldnt digest food, I was malnourished and starving to death. I was admitted to hospital in November and put on a PICC line and TPN feeding, where nutrition goes straight into the arteries around the heart and bypasses the stomach and bowel, this was for a month until I was strong enough to survive a surgery to fix the trapped bowel and hernia. I have written about this on another blog and so I won’t go into too much detail, but that surgery did not go well and after being taken back to the ward, my bowel perforated and I developed Sepsis. I was rushed back into surgery and woke up days later in ICU after having been placed in a coma. I was in hospital for another month after that, spending Christmas and new year in hospital, I came home in January, two months after I was admitted.

I came home with a PICC line and needed daily IV antibiotics to counter the sepsis and infections raging in my body. I felt incredible unwell all the time, I had lost another stone and a half and had massive muscle wastage, I could barely stand. My PICC line and daily antibiotics carried on for another 4 or 5 months, life was the inside of my bedroom.

During this time, my tutors told me I could repeat the year, that it was no problem and to rest and recover. But I knew that I needed something to keep me going, I had my incredible husband, kids and friends of course, but I needed something that was MINE and mine alone. And so I kept up studying, kept making art, kept my brain active, my amazing tutor would FaceTime me in hospital, all the while reminding me to take it easy and take my time, but respecting my decision to keep working. I wrote a little about support for disabled students and DSA on a blog here.

Obviously my original plans, that included large scale sculptures, performance art and film were out of the question. So I worked with what I had.

I looked around my hospital bed, in a private room I was kept separate due to getting a hospital acquired infection, anyone who entered the room had to wear full PPE, a gown, mask, gloves and face screen. I had very little to work with! I had six drains in my body, they were kept in for so long, taken out, replaced, more added, some taken away. I had my stoma bag, I had NG tube and so many wires and tubes in and out of my skin and body, I had the PICC line that had kept me alive for months. And I became intrigued by the array of colours that were coming out of my body. You think it’s just blood, piss and shit, but then these drains were pulling crazy coloured fluids from me, the NG tube spouted bright green/yellow bile, the colours were both disgusting, but also beautiful. And so I photographed the bags of coloured fluids, thinking of them as artists medium. Don’t worry, I wasn’t going to paint with them! But I did get a Nix colour sensor so I could find out more about these colours, and from there I created some colour palette art works of the colours of my body and named them Samtones.

I also created a diary out of the small paper cups that my pills were delivered to my bedside in every day, the words and images that filled my head were squirrelled away into these disposable cups that I flattened and made into a book.

I wrote my Manual for Practice, the several thousand words about my art practice, academia and theory behind my work, handed it all in, hung my exhibition, crossed my fingers and hoped for the best!

And last year I did it! I graduated!

Not one second of it came easy, I had to work my arse off for this, I fought so hard to keep going through incredible pain and fear, through being bed bound for months, through foggy heads and drugged up brains, I read, I wrote, I created and I did it. I got my degree. First Class with honours in Fine Art! With Timm and all my bambinos by my side!!

And the icing on the cake was that Timm completed his Film degree despite being a full time carer, having to learn how to give IV meds, visiting me in hospital for 12 hours a day, having to work, care for the house, kids and pets and do it all alone! He got a First class degree with honours in Film Production and I couldn’t be prouder of of both.

Never give up on your dreams, just keep swimming and fight for what you want in life!

Peace and love

Sam x

Disabled Student Allowance (DSA) and Disability Support in university

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As you may know, I am going to university this year at the grand age of 39. If it wasn’t scary enough to be heading into education as Im hitting 40, doing it with a chronic illness is even more terrifying. A friend told me about Disability Student Allowance (DSA) and also about the Disability support team at universities. These things have made the world of difference and so I thought I would write about it today.

DSA

Disabled Students’ Allowance (DSA) is there to cover some of the extra costs you have because of a mental health problem, long term illness or any other disability. There are three parts to it; specialist equipment allowance, non-medical helper allowance and general allowance.

You can get help with the costs of:

  • specialist equipment, for example a computer if you need one because of your disability
  • non-medical helpers
  • extra travel because of your disability
  • other disability-related costs of studying

You may get a new computer if you do not already have one, or your current one does not meet your study needs. More information will be provided to you if you’re assessed as needing a new computer. You’ll need to pay the first £200, which is the minimum cost that any student is likely to incur when buying a computer. DSAs do not cover disability-related costs you’d have if you were not attending a course, or costs that any student might have.

Man and woman wearing Sheffield Hallam uni jumpers

How to apply

You can apply for Disabled Students’ Allowances (DSA) if you live in England and have a disability that affects your ability to study, such as a:

  • specific learning difficulty, for example dyslexia or ADHD
  • mental health condition, for example anxiety or depression
  • physical disability, for example if you have to use crutches, a wheelchair or a special keyboard
  • sensory disability, for example if you’re visually impaired, deaf or have a hearing impairment
  • long-term health condition, for example cancer, chronic heart disease or HIV

You must also:

  • be an undergraduate or postgraduate student (including Open University or distance learning)
  • qualify for student finance from Student Finance England
  • be studying on a course that lasts at least a year

You can find more information on the government website here.

You apply through Student Finance where you are led through the assessment and application process. You’ll need to prove your disability through a letter from your doctor or medical team and other medical reports. I used a letter from my consultant that he had made for my PIP application as well as a copy of my surgical history and letters showing my need for further tests and consultation.

UCAS

UCAS have a whole host of information about being a disabled student here. Read through and also contact the university that you are planning to attend to meet their disability support team. Once I had a confirmed place, I contacted the team and arranged a telephone meeting where we went through my illness and how it effects me. I applied for DSA through student finance and sent them all my evidence and once they confirmed I was eligible, I arranged a needs assessment with an assessment centre, there is a fee for this, but it is paid for from your DSA. Don’t book this until asked to by Student Finance England.

After the assessment, you’ll get a report listing equipment and other support you can get for your course. This was a two way conversation with a trained assessor. I was nervous about this, it was done over the phone, but the assessor was brilliant. He put me at ease and was knowledgable about disability. We talked through each section and how things may effect me and what they could put in place.

What you can get

If you need a non medical helper to get you through your course, they can arrange and pay for this. This wasn’t necessary for me. We talked about what equipment I currently had such as laptop and printer and I said I was happy with the ones I had, but they suggested equipment like a laptop tray for bed so if I was struggling, I could still work from my bedroom. Also a microphone to record lectures and a headset and headphones.

I also received software for my computer that may help in my studies, this included mind map software and a recording software that allows me to use recorded lectures or my own voice notes.

With the Disability Support team at the uni, we had another phone call where we created a Learning Contract. A Learning Contract is a document that:

  • recommends reasonable adjustments so that you are not disadvantaged by your condition
  • gives relevant staff the information they need to support you

So for example, my learning contract includes things like;

  • I may need to get up and leave the classroom without warning and may not return
  • Getting up and move around and stretch during classes
  • Needing longer library book loan times
  • Not lifting heavy items
  • Missing classes
  • Extensions

It basically gives me the confidence to know that my tutors have an understanding about my condition and can support me in any additional needs I may have. I also applied for a Parking Permit for the university and can get much reduced taxi fares if my health means I cannot drive or get public transport.

Crohns and Colitis UK

Crohns and Colitis UK have a great guide for students with Crohns or Colitis heading to uni, you can find it here. They say:

You may not see yourself as having a disability, but having Crohn’s or Colitis may mean you have needs other students do not, and that you might benefit from some of the support offered in this way. All Higher Education (HE) institutions should have a Student Disability Services department or team, (although the exact name may be slightly different). Details of how to contact them will be on the university or college website. The site may also give information about the types of provision available.

For a student with a chronic medical condition, such as Crohn’s or Colitis, ‘reasonable adjustments’ might include, for example, arrangements for extra time in exams or extensions to meet coursework deadlines when fatigue or other symptoms are a problem. It might also include arrangements to allow you to eat or take medication during teaching sessions.

Crohns and Colitis UK – Students with IBD

Daunting

I know all this can feel really daunting, and it is quite a lot of admin and takes time and head space. But if you are a student, you are entitled to support to make your experience as easy as possible. You shouldn’t be at a disadvantage because of your illness or disability.

For me, just knowing that my tutors will already have this knowledge about me and I won’t have to stand and explain myself constantly is such a relief. Of course I will keep an open line of communication with them throughout, but I want to be able to start my course without being frightened of being embarrassed by explaining myself in front of others.

Both the DSA assessor and the disabled support team at my university were so gentle, understanding and supportive. They made the whole experience so much easier and had so much knowledge. As the telephone assessment was around 2 hours long, the assessor kept asking me if I was ok or if I needed a break. It has all been dealt with with care and dignity.

This is just my personal experience with some great links thrown in, I hope it helps. If you are interested in finding out more, speak to your university and they will be able to help.

Peace and love

Sam xx

How the pandemic has changed my life

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2020 has been a ridiculous year, unprecedented as so many people have said, and I think it has changed how so many of us feel about ourselves and our lives. And we are no different here in the Cleasby household. I said a couple of months ago that my big news was that I was going to University this year at the grand old age of 39. But also my husband Timm has decided to do it too! He is 48 and will be heading to do a degree in film.

We don’t do things by halves do we?

A series of unfortunate events

Lockdown was a bizarre experience for everyone. For us, it was another trauma in a series of tough events. In December, our beautiful 12 year old dog Lola got cancer and died, just a week before we moved house. So Christmas was two weeks later amidst boxes and the confusion of not quite knowing where everything was. I then ended up leaving my job that I absolutely loved, but had gone totally awry. I was incredibly poorly, awaiting another major surgery which happened at the beginning of February.

The recovery from this surgery was a nightmare, I had complete Ileus where my bowel stopped working for three weeks and ended up with an NG tube (Nasogastric tube) and on Total parenteral nutrition (TPN). My kidneys began to fail and I nearly died. It was a very difficult time for us all as a family. For weeks I was unable to do anything, the muscles in my arms and legs are wasted and I was left weak and exhausted from the kidney issues.

woman with NG tube and a bag of bile

So 7 weeks later as I was just starting to feel a little bit human, it was a total shock to find the whole country going into lockdown! I hadn’t been able to leave the house for a couple of months and then suddenly we weren’t aloud to leave the house and thousands of people in the UK were dying. I was terrified. Due to Covid, I also lost my radio presenting job and our photography business was severely affected as we couldn’t shoot anything. All just as we had taken on a bigger mortgage.

Too much to bear

To be honest, it all just felt too much to bear. It was like everything was going wrong for us and it hit us both hard. My husband is a total workaholic, and all of a sudden, he had no work at all. At first we struggled with knowing what on earth to do with ourselves. We both felt very down and like we had lost part of who we were with the loss of work.

But there was nothing we could do about it and so as we have had to do so many times before, we tried to find the positives in the situation. We were both healthy (ISH!), we had our kids with us safe and well, we had a beautiful new home and though we desperately were grieving the loss of Lola, we had our chihuahua Lemmy to hug and keep us going. We also talked about how many times after surgery, I get back to things too quickly and don’t give myself enough time to heal, so this enforced rest and downtime could be a blessing in disguise.

family stood outside a house during lockdown

We walked a lot in the park, we learnt to bake bread, we bought a blow up hot tub and spent a lot of time chilling in the garden. We played games with the kids, read a lot, watched a lot of movies. There were things that needed sorting in the house that we wouldn’t usually have had time to do, so we decorated and sorted the bathroom and fixed up our camper van. We also started plotting.

If I won the lottery…

One day I said to Timm “If we won the lottery, I would go to university. I never got to go as a youngster and I feel I missed out”. He questioned why I would need a lotto win to do this, and I said that it would mean I couldn’t work full time and study. But as we talked about it, it started to feel more and more possible. I looked into it and saw that as I didn’t have Alevels, the uni would consider my life experience as part of my application.

I began putting together a portfolio which was scary but fun, the worry of others seeing my work nearly got too much. I thought about the experience I had and realised it was more than I had first thought. I knew that I wanted to do art, but I also knew I wanted it to lead somewhere where I could help people. I read up on Art Therapy and just felt that I had found what I was looking for.

During this time, Timm told me how excited he was for me, but that he did feel a little jealous! So I suggested that he do the same! He is a really creative person and has run an arts collective and a photography company for the past ten years. But he wanted to know more about film and have the time to gain new skills. And so he did!

New starts

Next week we both start university at the ages of 39 and 48. Something neither of us ever thought would happen and if I am honest probably wouldn’t have happened without the pandemic.

Often we get so caught up in the daily grind of life, in habits and fall into a groove of just plodding on. And when something happens to blow life apart it can shake you free of those binds to rise up and look at what you actually want from life.

We were happy before. Last year he was running the photography business and ran a music festival in Sheffield and I was working for a charity supporting disabled people as well as having my own radio show on Saturday mornings. Life was good. But that series of events from December through till July just changed everything.

man and woman walking a chihuahua through a field

We have had so many ups and downs, nine surgeries in the past 7 years and so much uncertainty around my health and there were moments where I felt like this pandemic was going to push us over the edge. But in true Cleasby style, we have picked ourselves up, dusted ourselves off and tried a new path.

We are both nervous about taking on uni later in life and carrying on running businesses and bringing home the bacon but we have always said that we would rather regret the things we have done than regret not doing them. Who knows where our new paths may take us, but I couldn’t be happier to be facing it with my husband together.

Thinking of others

I know I am super lucky to be in this position, I don’t take it for granted that I have this opportunity when so many do not. It is easy to say we should all look for the bright side, seeking out a positive even when everything is shit but not so easy to do. But what a life with chronic illness has taught me is that nothing is guaranteed, we never know when this life we have could be taken away from us. I have learnt that I need to say yes, to be brave, to try the things I dream of even if I may fail.

The pandemic is simply awful and my heart goes out to everyone who has lost a loved one, has been ill themselves and everyone who has missed time with family and friends, who has had their care cut, who is lonely and struggling.

There is a quote that I often use and it feels apt today.

Happiness can be found even in the darkest of times if one only remembers to turn on the light.

Albus Dumbledore

I hope you can find the light switch, peace and love,

Sam xx