Maddie Trueman has braved adversity her whole life because doctors don’t know how long she would live due to her cerebral palsy. But this year she survived an operation, not to mention the pandemic, and celebrated a milestone birthday with her loved ones
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’m a Taurus, my favorite color is red and I never say no to Baileys. I also have cerebral palsy and a “moderate learning disability”.
Cerebral palsy is something I’ve lived with all my life. Together with my learning disability, this means that many things are harder for me than others. When I was little my mother took care of me – I miss her very much. Now I have carers who help me: I see them like my extended family and I am very grateful to all of them, especially now with Covid-19.
Like all, the pandemic and lockdowns have been a very strange and challenging time for me. I’m a very social person and I find it very difficult and a little annoying not to see people or do things. Just as we entered the first lockdown, I became a great aunt – that was so exciting to me and I couldn’t wait to meet my new nephew, Oscar. I remember getting so excited the first time I heard the news that my niece was pregnant (I’m a big baby boy!), But with the new regulations, the meeting with Oscar had to be done through FaceTime, which wasn’t entirely was the same, although I was still very happy to see him. But I had to (and must) be patient.
During the year I started having problems with my food and drink. These are things I’ve always had problems with, but this time it was worse. It got so difficult that I was hospitalized at the height of the pandemic.
I don’t like hospitals and I wasn’t very happy to be there, but I knew that the people there were trying to help me. I was very weak and had to have an IV drip for several weeks before the doctors could consider possible surgeries for me. During this time my caregivers took turns coming to me and with their help I did FaceTime with my family (including Baby Oscar) every day. I’ve had a few bad days, but seeing them all helped me get through. Seeing Oscar’s little face really lifted me up on days when I was sad. The sisters there were also very nice and helpful – before I left I made some cards for them with the help of my supervisors to say thank you.
Eventually I became strong enough that the doctors considered operating on me. My brother Michael had special permission to come to the hospital and he helped my caregivers and doctors explain the procedure to me. I was very nervous, but I wanted the surgery because I knew I needed it to live. A lot of people don’t notice when they meet me, but I’m actually pretty tough – it wasn’t my first operation.
When the big day of surgery came, Zoe, one of my supervisors, asked me if she could accompany me to the operating room, and I was very grateful for that. She came with me as far as she could.
The good news is that the surgery was successful! When I came to, I had a feeding tube and that is now my main diet. 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 take a look at my tube and the pouch my nutrients were fed into. It’s a bit sad for me that I can’t eat normally anymore (I love food!), But it means that I’m much less afraid of 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 medication is in my tube.
“A lot of people don’t notice when they meet me, but I’m actually pretty tough – it wasn’t my first operation”
After that, I couldn’t wait to get home. I was sick of being in the hospital. I continued FaceTime every day my family and they encouraged me to be patient, but it was difficult.
At some point, the day I was due to be released was set and I was so excited! But the day before I was due home, a patient I shared a ward with tested positive for Covid. I am very susceptible to the virus because of my cerebral palsy, and my family and caregivers have all been very concerned. The patient was quickly isolated, but that meant I couldn’t go home yet, which was disappointing.
Fortunately, I tested everything clearly and was able to leave the hospital the following week. Due to the additional needs that I now have, however, I was unable to move back to my old home permanently, even though I was able to spend one last happy Christmas there and I am glad that I have this memory. Having to move was a minor blow to me. I had lived there for 20 years and was very sad. I knew that I would miss the carers there and the other residents.
But my new home has things that make my life easier, and some of the carers from my old home have moved in to help me settle in. I love meeting people and I enjoyed getting to know my roommates and caregivers. as well as planning the furnishing of my new room – my window overlooks one of our gardens so I can look out and see the birds. Looking forward to the day I can have guests to show them around properly.
When I was little, many doctors were unsure how long my life could be as my cerebral palsy is quite severe. But in May 2021, shortly after my Covid vaccination, I celebrated my 70th birthday. I was having a little tea party outside in my new garden and was able to see Baby Oscar in person – that was the best present I could ever ask for!
Life is still not back to normal and I’m still getting used to my new home, but overcoming challenges is one of the things I do. I really just wish someone would invite me to a wedding next!
Rachel Coffey | BA MA NLP Mstr says:
At the moment, life is a little different for many of us; Maddie is no exception and she has shown extraordinary courage in overcoming the challenges that lie ahead. It is so encouraging to hear that despite the most difficult circumstances, she found friendship and compassion in those who cared for her.
In the past few years we have all been tested in ways none of us could imagine. Maddie reminds us that we can never underestimate the power of the human spirit to help us through tough times and become happy again.
To connect with a counselor to discuss ways to overcome challenges or manage anxiety, visit consulting-directory.org.uk