Labels. They are just words. Labels are words that give definition. Labels help to give recognition and hopefully understanding. Labels can trigger further support. Labels can help to prevent discrimination. Of course, labels can have the adverse effect. Labels can lead to the feeling of exclusion and isolation. Labels can breed stereotypes. But labels can provide answers. Labels can offer relief. Labels can be a diagnosis. Labels can be insightful. Labels can serve a purpose.
Labels can also suck.
I don’t really like the term, ‘label’ and some people reject this as a word which describes a specific need or condition. Some people are, in fact, highly offended by the whole notion of ‘labelling’ an individual – to give a name to a condition or need. My intention here is not to offend anyone but show how your stroke has brought with it a dictionary of terminology we never once expected we’d use. Others embrace the idea of having a ‘label’ because it provides an answer after a long battle to recognise a need and it may well be the ticket to gaining further support. Whatever terminology people choose to use (label, diagnosis, answer, category, descriptor name etc, ), I’m finding it problematic because it relates to you.
To me, you have always been Evie. It sounds so obvious and silly when I write it. But what I mean is, you have just been you without anything defining you. This tragic episode in your life, the stroke that rocked your world in June has brought with it labels of its own:
‘Childhood stroke survivor’
Childhood stroke survivor. You’re definitely a survivor. As for the words, ‘childhood stroke’, these should never be seen together. But you sweetheart, you’re a survivor and we count our blessings about that.
I find it incredibly hard, no, almost impossible, to accept that this stroke has left you with a brain injury. When your parents were first put in touch with the Child Brain Injury Trust it seemed incomprehensible…a wake up call perhaps…a stab to the heart…a sudden realisation that the stroke had caused an injury to your brain. No parent wants to hear that. To think that your poor little brain has suffered some sort of irreparable damage is unbearable. This is when I have flashbacks and so many memories of you come flooding into my mind. How as a baby, you only ever really wanted your Mummy and would be sick over anyone who tried to cuddle you for a little bit longer than you could tolerate. How you had just learnt to walk and toddled around during the pre-Hen Night drinks, making my friends coo over you. How you loved to race against anyone at family BBQs and would do your utmost to win. How you would chase Uncle Damian in the garden after he’d put an ice cube down your back! How you would sing as loud as you could at family gatherings in your kitchen. How you loved maths and enjoyed number challenges. How you wanted to learn to play the piano and the cornet. When I think back to the day you were born and when I met you and every memory in between then and the 19th June 2017, it pains me greatly to think how life has changed for you. It breaks my heart to hear the words ‘brain injury’ associated with you. Oh darling Evie, how could this have happened? I’m just not ready to accept that it has. That your brain has been so affected. I look at you and I feel like I’m living in a parallel universe, that this surely didn’t happen to you. Sometimes I say to Uncle Damian, that I almost have to jolt myself back into reality and remember that the stroke and all its consequences are real. I also carry a guilt and I know that I have nothing to feel guilty about. I know that this was beyond all our control. We couldn’t have prevented it. But I feel some irrational guilt that this has happened to you. As I always say, multiply this beyond measure and you may just get an inkling for how your parents feel. I look at you and feel so devastated because you really have no idea of the enormity of the situation. I’m glad you don’t. Right now, you know you’ve had a stroke and you know that you can’t walk and that your right hand isn’t functional. You get frustrated because you are not able to walk and you can’t always get your words out. But you live in the here and now. You have no concept of how this might affect your future.
We don’t talk about it much. Talking about it means we are admitting to it. Talking about it means that it might be true. But your stroke has changed you, for now. We didn’t want it to. But I greatly fear it has, for the moment at least. You have always been an empathetic girl and sensitive to others. You are passionate about things important to you. Since the stroke, you have not really shown that much emotion. You haven’t really cried. Yes, you get frustrated about your new physical and verbal limitations, but you don’t seem to cry much anymore. You seem indifferent. You still get excited which is amazing to see. Although you have always had a wicked sense of humour, this has become quite a strong attribute especially since your internal filter has faltered. Rather than pausing before you speak, you’ll just say what you think without censorship …”Granddad, have you got a will? Can I have all your money when you die?” This can be quite funny but your newly developed boldness and frank way of speaking is something we’re not used to. Your new indifference has been noted but we can also see glimmers of how you once were. We hope that as your recovery continues your emotions will also develop and those glimmers will become great bursts of light.
Then there’s your wheelchair. You get around in it quite well but there was a suggestion that you could have an electric one because there was a concern that using the wheelchair in the way you do, reinforces and strengthens your left side – you use your left arm and leg to move it but also lean to the left as you do so. However, the idea of an electric wheelchair has been set aside for a host of reasons. Conversations such as these about wheelchairs have become common place since your stroke, yet this does not mean your parents are prepared for them. Such conversations are highly emotive while trying to be practical with your best interests at heart. The fact that you are unable to walk unaided for any length of time means you spend the majority of your time in a wheelchair and technically this renders you ‘disabled’. Once again, I’m struggling with this terminology. We might prefer to use ‘hemiplegic’ to describe your loss of movement and function down your right side, but it really isn’t any better. Our, “go get ‘em” Evie who was so full of energy and zeal, can’t be described as ‘disabled’ can she? Can you? Unfortunately, you can. Although you are determined to walk again there is a long way to go. Last week, you had an assessment and the physiotherapists were so pleased with how far you have come in three months. Yet we know there is still a lot of hard work ahead. You’ve been fitted with a new foot splint that has a hinge at your ankle to help support the muscles in your leg and foot; as you try to move it also keeps your limb in the correct position. In physio sessions at the hospital, you have been trying to walk on the treadmill with support, but your muscles in both legs have grown weak, so you can only manage 30 seconds on your feet. Trying to learn to walk again seems rather technical – when to straighten your leg, have a soft knee, swing your arm in an ‘l’ shape, move your weight through your foot. There’s so much to think about. You never had to think about this when you were 10 months old and finding your feet. Right now, there seems so much technique involved and you’re having to put so much effort in, it’s exhausting! Your poor little legs are left shaking after only a few minutes of exercise. At present, your lower leg muscles have not awoken which means your leg is not stable to put weight on. The functional electrical stimulation (FES) has continued in the attempt to stimulate the nerve cells in your muscles. You don’t particularly enjoy this treatment as it sends an uncomfortable sensation down your right side, but you tolerate this. Mummy and Daddy do physio exercises with you on a daily basis on top of your appointments in Birmingham. We know that you find the exercises laborious and monotonous – you tire very easily and your concentration span has been hugely affected, so the repetitive nature of the physio is undoubtedly boring and unappealing to you. But you still do it because you don’t really have a choice. We cannot deny your desire to walk again. But right now, the fact you cannot walk means you are certified as ‘disabled’. Something I never thought I would say or write about you.
I know that children and adults with disabilities live very fulfilling lives and there are so many inspiring stories out there about how they have overcome adversity and taken on challenges for personal reasons, enjoyment or fundraising. Disability is not necessarily negative and it comes in many, many different guises and severities. Some people are born with a disability while others, like you, acquire a disability. Everyone has their own experience and everyone will face their own struggles as well as celebrating achievements. As I’ve said before, we are so lucky that we still have you but at the moment what has happened to you is still very raw. Your Mummy and Daddy are still coming to terms with the fact that you’ve had a stroke and the repercussions have been so consuming that although they are going through the process of hospital appointments, home assessments, wheelchair fittings, physiotherapy, speech and language therapy, etc, etc, etc, it is difficult to digest and accept all that is going on. Like I said, it is all so raw. I know…we know, that people are living with disabilities every day and you are now dealing with the logistics of daily life and the emotional effects of such a change, just as others are. You may not have the worse disability in the known world, we understand that, but it has been unexpected and a great shock. It is such a new way of life. It has been a cruel and harsh learning curve for your parents. Whoever thought they’d be displaying a blue disability parking badge in their car? We are so used to seeing you running around, that it is difficult to see you in a wheelchair. You are a remarkable girl though and despite the angst and frustration of being trapped in a wheelchair, unable to walk unaided for any distance, you will not be defeated. Thanks to kind fundraising, a special musical stand has been hired which is enabling you to play the cornet and continue with lessons. This is even more astounding because you are now having to play left-handed and facial palsy, caused by the stroke, makes blowing into the cornet more difficult. Undeterred, you have carried on and this in itself is extraordinary.
Your home has recently been assessed by the Physiotherapist and Occupational Therapist to ensure it is safe for you but also to enable you to have a degree of independence. Stair rails, toilet frames, bath slides etc etc. All such aids are visual signs of your disability. The stroke is now invading your home. I know Mummy finds this particularly hard because she has been determined to claim back some normality in a time of despair and great emotion and upheaval. Your home has been a sanctuary and this equipment is a clear reminder of what has happened. There’s just no escaping from it.
Labels, diagnoses, answers, descriptors, definitions, ….whatever terminology people wish to use. They can be extremely useful and as a result can ensure a better quality of education, healthcare, employment, housing and lifestyle. Labels can be positive. But when it comes to you, Evie, I’m afraid that they suck. I don’t want you to be labelled or be defined by your stroke. I don’t want you to have to carry around all the baggage this stroke has lumbered you with. I hope in time, you will just be Evie again.
Regardless of everything – label or no label. Disability or no disability. We will love you just the same, like we always have.
Lots of love,
Auntie Diane xxx