Dear Cerebral Palsy,
It certainly feels like a lifetime since I caught up and connected with you properly. Sorry, I feel kind of bad about that, but in the interest of full disclosure, a lot has happened to me this year; some of it is pretty awesome, other bits not so much, but I am hopeful that you are as glad as I am when I say that I am still here and thriving.
So, I guess you will be wanting to hear all about the things in our life that you might have missed. (Yes. I know that you are always with me, and I feel your presence always but lets be honest, even after all these years. we still don’t always get along as well as we could). Feel free to get comfortable cerebral palsy, this will be another interesting ride.
It will come as no surprise to you that I remain as stubborn as I always was, and I still insist on doing this myself, even if I need help, you and I know that generally I will be very unlikely to ask for it. We know growing up with a disability was in parts, very confusing and upsetting for us. We were very aware of just how different we were from all the other children in our community. not because we were told at that stage, but because we could feel it, in the moving around. falling over and finding things others were doing very difficult. Having said all of that though, we were also grow up knowing that our challenges made us special. Because of the support we needed from our leg braces, we developed our love of colour and expression. And I am sure you can tell, the love of colour you gave me still exists, even as an adult, thanks to you, I am not afraid to wear rainbows, patterns and bright coloured outfits – this brings me joy and has become such a large part of the way that I present myself.
The point is, as I am sure you know – our differences, and the support were given as a child and young person, made us powerful. Cerebral palsy, we have done so much together as grown ups, and you living alongside me, has positively impacted the way in which I support the students I have worked so hard to look after, whilst also giving me the opportunity to speak, celebrate and advocate for others in similar positions throughout my adult life, and I hope you know that I am truly grateful to you for that.
Now, as I am sure you are fully aware, our disability has been negatively viewed. even though we are an adult and people in our life, particularly in our work setting, feel they have the right to argue that our condition “can’t be that bad” because they have met individuals with the same condition as us who can’t speak, so we “should be grateful” that it is not that difficult for us. I know that we have grown up brushing off comments and conversations and opinions like that one – but I also remember how much that one hurt. Because, even though we have learned to live alongside each other, the pain and difficulties I sometimes experience due to your existence are still very real and valid. I remember feeling incredibly angry and upset and confused that someone who knew so little of our journey was spending so much time invalidating it.
On the flipside of course, we still have to tackle those who believe that our condition makes us less capable, we have had several incarnations of this occur over the years, with our latest battle stipulating that one of the reasons they had to do so much more was because “Lucy has problems with her legs” and because “she has a disability so finds it difficult to move.” This thought still makes me angry and confused as it feels as if, no matter what we do we can’t win….. we are are either too disabled, or not disabled enough, that is confusing and continues to be a hard notion to tackle as much as we have to.
Despite all of this, your existence and our unwavering support network has made me a very unique and powerful individual, who knows who she is, what she believes and stands for whilst having learned to fight for her needs, to be heard and to challenge and question other people’s perceptions of her. We spent so long working to develop me as an independent young woman, and I have learned very well how to function like that; I am very aware however, that in part this happened because we were worried that I wouldn’t be able to live a “normal” and full life that might involve another person. Well, I have a pretty cool update on that thought process too….
I have been in a steady relationship for the past 2.5 years, with a man that loves us so entirely that we recently became engaged, he wants to spend the rest of our lives together despite my difficulties and differences; cerebral palsy, he has fully accepted that you will also be a part of our story and celebrates and supports you so completely. He accepts that pain is a part of our (sometimes) daily life, always having painkillers, support and gentle on hand. He has supported me in learning new things, combining my love for Disney with his for lego… he has taught me patience when I have wanted to throw the lego pieces on the floor because the tiny pieces were testing my co-ordination. He has shown me that you can build adorable things, even if you have to persist and find a new way around the blocks. He does not believe that I am less capable and lets me do things independently, being ready and waiting to help and support…even if i haven’t asked for it.
We have also bought a house together….in a tiny English village where everyone knows everyone, and they hold summer village fete’s as a community. It is peaceful and brings a new form of joy in a life that I never thought I would be living as a person with a lifelong condition.
So I guess, what I am saying is, even though living with our disability is still confusing on the regular….there is a great deal of love in our life at the same time and I am ever grateful for that.
Thank you for building this life with me 🙂
All the love,
Lucy 🙂
Cerebral Palsy and me - Life through Lucy's eyes 