The joy of Colour: Finding my way to my own version of pretty.

Yes, people with disabilities are allowed to feel pretty too.”

So here am sitting in my flat on holiday and I have just looked around and come to the realization of how much I have changed over the past 18 months. I am permanently surrounded by bright colours and things signifying the pride I have in being part of the LGBT+ community. (no joke, I am listening to an LGBT+ anthems playlist and wearing a “Love is Love” sunflower hoodie as I write this post!) Those that know me may be aware that I have only recently felt able to comfortably start living life as an “out” bisexual member of society who also lives with cerebral palsy, if not – this piece is how I choose to start introducing people into my full and complete world.

It obviously no secret to anyone reading this piece that I am proud of the person I am a lot of the time and my cerebral palsy has always played a huge role in that. It has come with it’s fair of challenges too though – particularly when it comes to the way I feel about myself sometimes, as well as the constant reminder from the wider society that I do not function in the same way as others and probably never will. This has often spilled over into relationships and conversations with people with regard to whether or not I am considered “attractive” or “pretty”… strangely enough many of the encounters I had growing up resulted in believing that I was neither pretty nor attractive due to the fact that I had a disability – it affected me a lot because if people tell you something enough – you start to see things they way do. I am not going to lie – cerebral palsy is not something that would label as “pretty” because it can hurt- A LOT and it resulted in many trips and falls for me growing up. But what i have discovered is that just because it is not pretty does not mean it cannot be powerful. Powerful is pretty too and it is thanks to the double leg braces I had a little girl that I developed my love of bright colours and bold patterns (I mean come on, who doesn’t want to walk around with red, teddy bear covered leg braces on them all the time!?!)

I can hear some of you thinking “okay, fair enough. But was have cerebral palsy have to do with your being a member of the LGBT+ community?” Let me explain because it is not something i think about a lot when I am alone – but more to do with the questions other people feel compelled to ask. When I was growing up people used to ask how someone like me might be intimate with another person due to the restrictions of movement linked with cerebral palsy, as well as questioning whether relationships i had with others were more “patient and carer “rather than equal and loving. As I am sure you can imagine this did little to help me feel pretty or attractive and really knocked my confidence. It was this reason that not many, if any knew that i was bisexual during my teenage years because I was scared and possibly ashamed of the judgements and opinions people around me might have if I introduced another aspect of my personality that made me so different from everyone else. Just as a side note to this bit – i don’t want you to feel sorry for me, i am in a much better place now – but i just wanted to give you the fullest possible picture of my reality.

Thinking about it – I probably started to accept and explore my sexuality when I left home to go to university. This was my opportunity to reconcile the two very important aspects of my make up. I joined the university Drama society and met a lot of my friends in the LGBT+ community through that, I was also lucky enough to live close to a city where LGBT culture was greatly celebrated, which meant i could start to find my place and feel comfortable with my whole self. It felt really nice not having to hide a part of myself anymore and it felt nice to have a part of myself back that I feel i had lost so long ago. This new found joy helped me to reintroduce colour back into both my personality and my wardrobe – something I am very pleased to say remains to this day!

Skip forward to now – and anyone i work or socialise with will be able to tell you that the way i dress is in no way understated – i am obsessed with rainbows, unicorns, pastels and bright colours and find joy in using them to express myself. I am also now a proudly out member of the LGBT community and work hard to represent that both in my personal and professional life. I do unfortunately still get questions about “how i can have both” a disability and be bisexual, it can be tricky to answer sometimes but I gently remind people that neither of these parts of my identity were choices – but they are a large part of who I am and i am finally learning to be proud of both of them. So I guess what I’m saying is, yes – disabled people can be pretty too – it’s just a case of finding our own way too it.

Remember – everyone is trying to figure themselves out, try your best to support them on that journey.

All the love,

Lucy 🙂

Lockdown Lessons: Healing may be tricky, but it is possible.

“But you’re disabled, so how is that possible?”

It’s been a while since I have sat down properly to write one of these, as you can probably tell by the title and quote I will be talking a lot about my mental health journey and healing process that comes along with that. I will also be getting very honest about the discussions, opinions and suggestions I am regulary given by other people surrounding how I might go about doing things as a person with a disability. (I would just like to point out here that these opinions are not things i tend to ask for…but people tend to give them to me anyway) So now that you know this might get pretty personal I would not be offended if you felt you couldn’t go any further, this isn’t going to be for everyone. If you are still here though….buckle up humans, we are going on an adventure!

If you are one of the people that has been following me whilst i have been writing these blog posts then you will know that over the past 12-18 months I have been through a lot. (I am aware that everyone is going through a lot right now, with lockdown and everything else but stick with me). It is almost a year since I was signed off work, on a plane home with no idea whether I would be able to go back to work after my time off. I have done a lot of work since then and I am pleased to say that I am writing this piece from a place of healing and love, in the hope that it teaches and shows that healing is possible even with it’s many challenges.

I’m sure that you have heard what i am about to say before but healing from trauma is not linear nor is it the same for everyone but i am sure that everyone can agree that it is not easy. Trauma can mess with you, there is no escaping that, in my case it made made me question my worth, abilities and grow to hate a condition that i had spent so many years learning to grow alongside and appreciate. Like i said though, i’m not in that space anymore but it has taken a full on emotional breakdown, several therapy sessions, regular medication and whole lot of work in my own time to get here. I remember how much i blamed myself for my pain and mental state at the beginning of my journey, but i understand now that i didn’t understand what had happened to me and that this had manifested itself into me not eating or drinking anything as a way to gain back some control in a time when I felt incredibly lost and undeserving of love. I can’t lie to you, since everything has happened to me, my relationship with food has changed. I find that there are days that i do not enjoy it as much as i used to and on those days I am simply eating because it’s necessary, but I am eating a lot more regularly than i was a year ago so i am proud of that. Lockdown has helped me to rediscover some joy (as difficult as it is) because I have grown very close to a few very good people who I can open up to without judgement and who will nag and chase me around to make sure i am taking care of myself, they are a huge part of my recovery and I am grateful to have them in my life.

As i mentioned i have been having some therapy sessions I guess you would call them, i am pleasantly surprised how much talking has helped me to process and come to terms with all that i have experienced. It has helped me validate and accept the trauma I have experienced in a safe environment as well as confronting the doubt and demons this caused so that i could start healing, growing and moving on. Take it from someone that now knows, talking to someone is NOT something to be ashamed of; in fact it has given me ways to cope on the days I find difficult, whilst also giving me a chance to reflect and freely express myself. I am proud of how much I have been able to open up and grow in the past year because it has changed the relationship I have with myself and others.

I am also on regular medication at the moment, i was initially quite sceptical about taking it because of the stigma and judgement that inexplicably seems to come with it. I am now about 4 months in and can only say positive things about it – it has helped me to find some mental balance within myself again, which means generally i am in a much better space than I was and can function more successfully as a result. Don’t be ashamed of using different strategies to aid recovery, I can guarantee that you won’t be the only one doing so. Like i mentioned earlier, recovery takes a lot of work in your own time so as difficult it has been in a way i am grateful for the periods of lockdown because it has forced me to spend time alone with my thoughts, meaning i have started to journal and blog again. It has also meant that i have had the chance to rediscover things I enjoy such as music, baking, painting by numbers and Disney as well as all the joy and support I give students within my job. I have had the opportunity to educate myself through reading books and articles about other people’s trauma experiences. It is comforting to know that I am not alone in my dark times and that with work and support healing can be possible.

To finish bit i want to say that i am still healing and growing, my journey is not over yet but I am feeling more positive as I continue. If you are working on yourself to – be proud of that, god knows we have learnt that life can be a fight sometimes, but i promise you can make it.

Now for the next part of the adventure…..(I realise that this blog post is quite a long one but hang in there we’re almost done!) Most of you reading this will probably know me well enough to know that it is no secret that I have minor cerebral palsy. (if not, welcome, I hope you enjoy the rest of the story). I would also like to mention for those of you that are interested that I am part of the LGBTQ+ community.

Anyway getting sidetracked, right at the beginning of this post i mentioned that we were going to have a little chat about when people give me opinions thoughts and suggestions about the way i live my life as a disabled person….even if i don’t actually ask. I understand that most of the time thoughts, questions and opinions come from a place of care and love. But trust me when I tell you that if anybody knows the best way to live my life with my condition it’s me…i have done it for almost my entire life.

One particular subject i think it’s important bring up in this piece is a sudden fascination some people have developed about my ability as a person with a disability to have romantic relationship with another person. Now i don’t know whether people are bored in lockdown but i have heard the phrase “But you’re disabled, so how is that possible?” and i’m not sure i am okay with it anymore. I am a competent , well liked and ABLE person despite all of my differences and challenges, I wouldn’t have achieved all i have if that weren’t true.

It seems that a few people believe it is their right or in anyway appropriate to question whether I as a disabled person would be able to have an intimate relationship with another person. I can confirm that it is none of anyone else’s business aside from the individual i choose to take with and myself, As for those who suggest ways in which i might feel most comfortable to be intimate i suggest you don’t, you have no idea how my body functions and I would not dream of doing it to you!

As a final note, to those of you who regularly question whether disabled people are attractive to others, I suggest you stop doing this. I can tell you from experience that it can be a struggle to find oneself attractive a lot of the time when you have a condition. I spend a lot of time being aware of it because it plays a huge role in how my days go much of the time and i do not believe sometimes that someone could find me attractive…so i am asking you, please don’t remind me of that feeling.

I am proud of my condition and it is a huge part of why i am the person i am now, all i am asking is that you be kind to one another….especially at the moment, thanks for sticking with me.

All the love,

Lucy 🙂

Adjusting Life in Lock down: learning to love yourself and your company.

So here we are, less than a week into a full lock down and I reckon we can all say that this has been the most difficult situation many of us have been in for a long time. I hope that all of you are managing to stay safe and healthy as best you can and I am sending all my love to you, your family and your friends through this challenging period.

March did not start off the way I planned, I woke up one Wednesday morning feeling the worst I had felt about myself in ages, and not really seeing the point of doing anything. As a result, after a trip to my GP I was signed off of work for a week due to stress. I remember feeling like i had failed because I had let the opinions, harsh words and doubt of another person scare me away from a job that I loved and question my place in an organisation that i had spent almost 5 years working very hard in. I got on a plane to go to my parents at the end of the same week feeling very lost, sad and unsure if i was going to be able to return to work after my time away.

I spent a week at home, going on mini adventures with my parents, trying out CrossFit with my sister (surprisingly fun!) eating food (which I had also stopped doing), cuddling family cats and spending time watching TV I had forgotten I enjoyed. Spending all this time with myself made me realise that somewhere along the road I had decided (or been convinced) that the person I had become was not good enough, worth enough or important enough, so what was the point. Let me be clear, I am right in the middle of learning that this is wrong, but I also know that it will take some time to believe, because the friendship I was involved in conditioned me to not like myself – trust me this is a negative thought process that is difficult to get out of, but i am taking it one step at a time.

You’ll be pleased to know (I hope!) that i did manage to return to work and my friends by the middle of March. I have started attending counselling sessions and am now able to put a name to the very unpleasant experience I have been put through…although if it’s all the same to you I won’t write it down just yet, i don’t think i am quite ready for that step.

I did just happen to return when all the drama with the possibility of a lock down was kicking off, typical…just when you are starting to get yourself back together the world goes and throws a massive curve ball at you! Anyway, now that we are stuck in this lock down I have learned pretty quickly that although it is a constant challenge, it has also been a great opportunity to reintroduce myself to me and get back to the roots of things that i had forgotten I enjoy. I have taken up Yoga and it has started to show me how much I am capable of, I have started listening to musical soundtracks and experiencing moments of pure happiness again. I know I have a long way to go in terms of trusting people again, pain can do a lot of damage, but the lock down has taught me that there are people in my life who love and care for me. I have laughed more than I had in months, socialised more than i hoped i could sometime ago and I have thankfully started to feel like myself again.

The best advice I can give you at this time is to be kind. I know that it is tough for everyone at the moment but the only way we are going to get through it is if we take care of each other. Keep in touch with your family, trust in your friends and check in with people who you might not know so well. I can tell you from experience that darkness doesn’t last forever and hope will always exist, even if you can’t see it right now.

You are loved, wanted, needed and important and I promise you there is a way to make it through.<3

All the love,

Lucy 🙂

To the person who doesn’t think i’m good enough.

Dear reader,

I call you that because I don’t know much about many of the people who might read this, but I hope that if you do find it that you stick with me until the end. I’m writing this to you pretty late at night because I am struggling to sleep and find getting things down on paper or on screen in this case, sometimes helps. Settle in ladies and gents because here comes the story.

So as you may have guessed from the title it has been a rough few weeks and you could say that I haven’t been in the best of places. i am trying to pull myself back into a positive space and heal so i think that it’s important I write this, I attended my first (or maybe second??) ever counselling session last week. I know that some of you might think that sounds pretty scary….believe me I am inclined to agree with you, my heart was beating REALLY fast before I went in. But you see , what nobody ever seems to tell you about these sessions is that they are basically a lot of talking, offloading and processing. Now don’t misunderstand, I’m definitely not saying it was all as easy as that…because it was not. I can say though, that even in the short space of time I was there i learned a lot about the person I am and how I got there.

I am 26 years old now and if you have been with me since I started writing this blog then you will have learned pretty early on that I have grown up differently and am generally quite proud of that. (If you haven’t, head back and have a look at the first entry to see what i’m talking about!) So as i am sure you know by now growing up or being an adult with a lifelong condition brings a unique set of challenges with it. One of these that I have experienced throughout my life is people consistently giving their opinions on what you are capable of or how much you are worth. I am perfectly aware that this kind of thing happens to everyone at one point in their life but what I have noticed more and more is that the condition that I had very little say over receiving has become for some people, a very large stick to beat me with.

Notice i said some people, because i cannot and will not deny that I have many incredible friends, supportive family and awesome colleagues who have shown me how brilliant life can be if you learn to ignore the negatives and just get on with things. The truth is though, I am only human and even though I could argue that I am used to some people trying to bring me down there comes a time when if you hear the same set of comments over and over it can get pretty difficult not to start finding some truth in them. I’m not ashamed to admit that for a while I did think that things were said were true and for a while I didn’t think i was good enough as i am. (not gonna lie I still feel like that now sometimes which is tough, but i’m working on it.)

I guess what I am trying to say, to the person who doesn’t think i am good enough is that I get it. But i also really don’t need you to tell me because it could risk all the hard work i have put in to getting myself to where I am right now. I don’t need you to remind me of all the challenges and battles and arguments I have faced because I was there for all of them and i can almost guarantee that you were not. You could not possibly understand what it takes for me and others to get through a day so please be careful with your words and opinions, you can never be sure of the effect they could have.

All the love,

Lucy 🙂

The endless challenge of finding a balance. I’m not being antisocial, just trying to recharge.

So before I start this entry I realise it has been a good while since I touched base with you all, sorry about that but I have just been living my life, going on amazing adventures and meeting the most beautiful niece ever (like, seriously she is awesome!)

Anyway, I recently made a promise to myself that I would try and be more positive, open to ideas and sociable. I hope that if you are reading this you will be pleased to hear that generally that plan has gone pretty well so far! J I have managed to spend time with colleagues and friends outside of work and because it is close to the beginning of the new academic year I have worked hard to try and get to know new members staff.

Now for those of you that know me well, you will hopefully understand that I sometimes find it hard to meet and introduce myself to new people in a social environment. Honestly it makes me quite anxious because not only do I find it difficult to engage with people sometimes, but you never really know what kind of personalities, opinions and people you are going to come into contact with and for me the not knowing is terrifying. Don’t get me wrong I’m not saying that I don’t have people that I get along with because I do, and I love them all, it just takes me a long time to open up and trust them.

I told you earlier that I have been spending more time with colleagues and friends, a great example of this is a House Party/get together I went to so that everyone could get know each other a bit better before all the work starts. It was brilliant and I really enjoyed myself BUT I also found it quite a test, I have never been a big fan of large groups of people, not only because there is an expectation that you interact conversationally and confidently (trust me, I can do it, I just find that unless I know you well I can be quite shy!) but also the physical aspects and difficulties. I don’t know who this will make sense to but if I am in a group situation I often find myself navigating my way around a room in my head, looking out for trip hazards and generally trying my best not to bump into/trip over things and other people. I spent a lot of the evening doing just that and I can’t lie it made me quite mentally and physically tired as well as a little panicked. But don’t worry I understand and want you to know that it’s okay if that happens, because at least you are trying.

I have been at my current workplace for a good few years now, I have worked hard; fought for my position and I like to think become very good at what I do. I love looking after and supporting students from a pastoral perspective; I will be starting a new aspect of my role soon and whilst in training I had to get up in front of all the boarding staff and tell them about it (aaaah!) I was very nervous because I suddenly became very aware of all the eyes looking at me, I got a little shaky but I am proud because everyone was very supportive and at least I did it!

As you can probably imagine the events of those couple of days made me pretty exhausted both mentally and physically so I took the decision to hide away in my flat for the day and do nothing; believe me when I tell you that this is not a bad or selfish thing to do, stepping outside of your comfort zone and facing a fear takes a lot of energy and focus so you absolutely have the right to recharge. Do something you enjoy, to calm and centre yourself. (I will often listen to musical soundtracks on full blast or use the Headspace app to relax myself J).

I understand on quite a deep level how much planning and preparation it can take to even will yourself to go to an event or gathering, so all I am saying is if you need a minute to step away from the madness then go ahead and take it. If there is ever a time that you find anything too much, don’t be hard on yourself, Rome wasn’t built in a day!

If you’re still with me and reading I bet it feels like quite a ramble! So I will conclude by saying the following, start small, accept support and be proud. If you spend time doing little things that you are afraid of then I am hopeful they will get easier. Celebrate each little step you take because it is a big achievement. Finally, please don’t forget to look after yourself, self-care is not a luxury but a means of survival.

You are never alone.

All the love,

Lucy J

I’m not always okay – and that is okay.

So here am again sitting in the space where I both work and try to live, as I write this we are coming to the end of Mental Health Awareness Week. Now I’m going to be frank, it has taken several days of conversations and out loud thoughts for me to even consider putting what I am feeling on paper (or on a blog but you get the point), I have decided however, that it is important that people hear my story so I am going to try and break it down.

I can’t say I knew a whole lot about mental health until recently but that is because I didn’t want to acknowledge that it was and still is a big part of the life that I am living. It’s Friday evening and I guess that if I looked at it hard enough you could argue that the challenges I faced as a kid led to mental health issues that I never noticed; I pride myself on being a person that works hard to achieve all I can despite my disability and I try to be positive but I won’t lie growing up with people making fun of and laughing at you because of something you can’t change was in no way a picnic.

I am 25 years old now and struggling with mental health is a very real and scary reality for me, I hate big groups of people, I always feel like they are looking at and judging me for the way that I move or carry out an activity, this sometimes makes me panic and stress – it can even turn something fun into something I just want to run away from. If you feel like this sometimes too it is okay, you don’t have to be completely together all the time.

I spend a lot of time in my own head, I tend to catastrophize and believe me I know how terrifying that can be because you start to think the worst of yourself and mentally tear yourself down. I have experienced this because I sometimes find that I beat myself up and I do not see myself as worthy because I have an additional need –trust me, even if you don’t feel it right now, you are worth it and all you have achieved is remarkable. There are days where all I can do is get out of bed, not see people or do anything productive but just use all my energy to get myself up and moving and that is okay. I have good days too so please do not think this is all doom and gloom, but I am just trying to be honest.

I like to think of myself as a hard worker, but there are days where I try to do everything because even after over 20 years of finding a way to function successfully I sometimes feel like I have to work twice as hard to prove that I am a valid member of the team and that I am worth the chance that was taken on me. The sensible and rational side of my personality knows that I am good at what I do and that am i am worthy but it is my self confidence that needs help. This is not something that can be fixed overnight but I am trying.

So I realise this piece has been me kind of rambling on (I struggled to put all this into words okay?!). But the point is that it is okay to talk about mental health because it is a reality that won’t just go away, sometimes you have to get out into the world somehow and face it.

I know what you might be thinking, “Lucy, it’s not always that simple” and you know what, you are probably right; but sometimes all you can do is take it a day at a time and do your best.

I have learned that self-care is a really important part of trying to keep myself in a positive frame of mind so I spend a lot of time with my headphones in listening to music and drinking endless cups of tea, I also spend time going for walks if I feel up to it as it gives me a chance to clear my head and try to find my own form of inner peace and simple joy, it’s not always easy but I have learned that you have got to make the best of the situation at the time.

 I am also incredibly thankful for the people I have in my life right now because they take some of the days I find the most difficult in their stride and are supportive, friendly and full of love/kindness. I do not know if they will ever understand just how much that means to me.

My last few bits of advice I can give you are these: if you feel that you need support please TALK about it, to a friend, family member or someone you trust. Don’t be ashamed to seek help, whether that’s therapy, medication an exercise routine (I had one of these and it actually worked out pretty well, I recommend it and want to get back on it) or a good moan/rant to someone, there will always be a way to make things better.

It took me a long time to believe this and I am still working on it but as a human being I am a pretty awesome individual and it is okay if things don’t go to plan all the time. YOU ARE NOT LESS OF A PERSON because of your struggle; it is just the way life goes sometimes.

Just keep being you and don’t let anyone knock your sparkle out because you matter too!

All the love,

Lucy J

Cerebral Palsy, I have learned so much from you.

Dear Cerebral Palsy,

I am sitting in my bed right now trying hard to write my first ever letter to you. Sorry if you think it’s taken too long, but you know how life can get. For the last 20 years or so we have co-existed and you have been a shadow standing by my side. I’m going to be totally honest, even now I don’t fully understand how you came to be in my life, as far can understand it life was pretty standard until you dropped in just after I turned 3 and forced the start of our relationship.

Routines had to be established pretty quickly once you had made yourself known, because although to be fair you wouldn’t have known it at the time but my parents had to change their already challenging circumstances to accommodate me and my new needs. Therapy seemed to improve and bring understanding into our relationship and swimming lessons seemed to let you sleep and I feel free from you, albeit only for a brief time.

You and I spent a lot of our time creating armour for my legs to prepare for when we entered the daily battle of walking – I need you to know that I am grateful for the protection because even as a young child you helped me find joy in the most unlikely places, the colours and patterns wrapped around my legs with Velcro made me feel safe and powerful, whilst the eye patch that your presence introduced me to helped understand that I could be anything I liked if I kept fighting.

I’m not going to lie to you kid, growing up with you consistently hovering was not easy, I spent a lot of my young life knowing that you were around me but not really knowing what you were, this made the constant stares, gasps and giggles when I hobbled along or fell over all more difficult to stomach because I just wanted to function and play like everyone else. Now Cerebral Palsy, don’t get me wrong, I know am lucky because you let me walk and I will always be thankful for that small victory that let me do so much.

I remember vividly the overwhelming amount of care and support that I encountered because you were part of my existence and I understood as I grew older that all the extra SEN lessons for sewing and drawing where you often pushed me to my limits actually taught me how we could form a team and function alongside one another. I will be forever grateful for all the positive people who invested so much time and passion into my progression, they are invaluable to me.

I now know exactly what you are and I have learned that although you sometimes make life a little challenging I will never let the bad days you raise your head stop me from reaching my full potential.

I suppose through all this I just wanted to thank you, because even though you are less prominent in my adult life your companionship has driven the way I live my life and care for the children with whom I spend so much time. I like think that when I graduated with my first class honours degree you were there at the ceremony as elated and proud as I was. The point is, until now I wasn’t sure how I felt about you. But I can now say that you have taught me to take care when I choose my friends, you taught to celebrate difference and see each individual as special and unique in their own way. Thank you for showing me that I can do things even when I didn’t believe they were possible. You have made me stronger and you are a large part of the reason why I have become who I am.

All the pain and tears have been totally worth it, I will never question why you are in my life. Cerebral Palsy, I do not regret anything we have been through and I am pretty excited for our future.

All the love,

Lucy J