My name is Madelaine, or ‘Maddie’. I grew up on a small family farm in rural Nottinghamshire. I have a sister and two brothers (Margaret, Michael and Jamie), I love parties (especially weddings), I am a Taurus, my favourite colour is red, and I never say no to a bit of Baileys. I also have cerebral palsy and ‘moderate learning disability’.
Cerebral palsy is something I have lived with my whole life. Along with my learning disability, it means that a lot of things are harder for me to do than other people. When I was younger my mother looked after me – I miss her a lot. Now I have carers who help me: I see them like my extended family, and I am so grateful for them all, particularly now with Covid-19.
Like everyone, the pandemic and lockdowns have been a very strange and challenging time for me. I am a very social person, and I find not being able to see people, or go out to do things, very hard and a bit upsetting. Just as we entered the first lockdown, I became a great auntie – this was so exciting for me and I couldn’t wait to meet my new nephew, Oscar. I remember feeling so thrilled when I first heard the news that my niece was pregnant (I am a big baby person!), but with the new regulations, meeting Oscar had to be over FaceTime, which was not quite the same, although I was still very happy to see him. But I had (and still have) to be patient.
As the year went on, I began to have trouble with my eating and drinking. These are things I have always had challenges with, but this time it was worse. It became so difficult that at the height of the pandemic I was hospitalised.
I don’t like hospitals, and wasn’t very happy being there, but I knew the people there were trying to help me. I was very weak and had to be on a drip for several weeks before doctors could consider potential operations for me. During that time my carers took turns coming to be with me, and with their help I FaceTimed with my family (including baby Oscar) every day. I had some low days, but seeing them all helped to get me through it. Seeing Oscar’s little face really lifted me on days where I was feeling sad. The nurses there were also very lovely and supportive – before I left, with the help of my carers, I made some cards for them to say thank you.
Finally, I grew strong enough for the doctors to consider operating on me. My brother, Michael, had special permission to come to the hospital, and he helped my carers and the doctors to explain the procedure to me. I was very nervous but I wanted the operation, because I knew that I needed it to live. A lot of people don’t realise when they meet me, but I am actually quite tough – this wasn’t my first operation.
When the big operation day came, one of my carers, Zoe, asked if she could accompany me to the surgery room, and I was very grateful for this. She came with me as far as she could.
The good news is that the operation was a success! When I came round, I had a feeding tube into my stomach, and this is now the main way I take in nutrition. I was taken back to the ward to recover, and FaceTimed my family as soon as I could to let them know how I was doing. Zoe helped me to have a look at my tube and the bag where my nutrients would be fed into. It is a little sad for me that I can no longer eat food normally (I love food!), but it does mean I have much less anxiety around taking my medication – swallowing pills has always been a bit of a scary task for me, and now I don’t have to because my meds go into my tube.
“A lot of people don’t realise when they meet me, but I am actually quite tough – this wasn’t my first operation”
After that, I couldn’t wait to get home. I was feeling quite fed up with being in hospital. I continued to FaceTime my family every day, and they encouraged me to be patient, but it was difficult.
Eventually, the day I was to be discharged was set, and I was so excited! But the day before I was due to come home, a patient I was sharing a ward with tested positive for Covid. Because of my cerebral palsy, I am very vulnerable to the virus, and my family and carers were all really worried. The patient was isolated quickly, but it meant I couldn’t go home just yet, which was disappointing.
Fortunately, I tested all clear, and the following week I was able to leave the hospital. However, because of the additional needs I now have, I couldn’t move back to my old home permanently, although I was able to be there for one last Christmas which was lovely, and I am happy I have this memory. Having to move was a bit of a blow for me. I had lived there for 20 years, and I was very sad. I knew I would miss the carers there, and the other residents.
But my new home has things that make life easier for me, and some of the carers from my old home moved with me to help me settle in. I do love meeting people, and I have enjoyed getting to know my fellow residents and carers, as well as planning the decorating of my new room – my window looks directly on to one of our gardens, so I can look out and see the birds. I am looking forward to the day when I can have guests over to show them around properly.
When I was little, many doctors were uncertain how long my life might be, as my cerebral palsy is quite severe. But in May 2021, just after receiving my Covid vaccination, I celebrated my 70th birthday. I had a small tea party outside in my new garden, and was able to see baby Oscar in person – which was the best present I could have wished for!
Life still isn’t back to normal, and I am still getting used to my new home, but overcoming challenges is sort of what I do. I really just wish someone would invite me to a wedding next!
Life is looking a little different for many of us at the moment; Maddie is no exception to that and she’s shown extraordinary courage in overcoming the challenges that came her way. It is so heartening to hear that despite the most difficult of circumstances she found friendship and compassion in those who cared for her.
In the last couple of years, we’ve all been tested in ways none of us could have imagined. Maddie reminds us that we can never underestimate the power of the human spirit to help us through the tough times, and to find happiness once again.
To connect with a counsellor to discuss ways to overcome challenges, or manage anxiety, visit counselling-directory.org.uk
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