The Greatest Gift I Never Used

So, yesterday was Father’s Day, or Fathers’ Day, depending on where you place that apostrophe. Covering my bases here.

I’m lucky. I have a great relationship with my dad. We’ve always gotten on well, and we have similar temperaments. I understand him. Plus, he’s kept all the stuff I don’t have space for but don’t want to throw out for the past ten years now. I think that counts for a lot.

I spent much of yesterday sat in his back garden, digging through the shed which has been home to some of my childhood treasures for a decade now. I didn’t plan things that way – when I moved in with him, age 18, it was a temporary fix to the problem of trying to move my sister and I from two large bedrooms into one smaller one. My divided childhoods merged into one house which didn’t have space for them both, and although the plan was to sift and sort and compress, that kind of never happened. Boxes of books and trinkets and treasures were placed in a shed which they never came out of.

Other things took over. Health, and the spiral of trying to work out what was wrong with me, and then before I knew it, I had moved out, and was thrust into the world of motherhood. The two-part childhood, which I had never resolved into one piece, had to wait. Part of me was in that shed, or in the loft. Growing dusty and damp; coated in cobwebs.

And now I’m here. Here as an adult, somehow, looking back on boxes which I’ve held in my heart for years, but not in my hands. Things I never grew out of and let go, but were left behind nonetheless. I’ve always had an obsession with nostalgia, and the past. I’ve spent over half my life trying to make sense of who I am, and I’ve always fallen short of the answer. It came to me, yesterday, that part of the problem is how much of me doesn’t add up.

As I looked over my old things, I started to realise how disconnected they were. Two worlds which never met. I have memories which I can’t place, because there is a section of my life which doesn’t follow the linear narrative of the rest. I can draw a line in my mind, connecting all the things I did with my mum, but my life at my dad’s didn’t run parallel. Those weekends and holidays existed in a different world – one where I didn’t have to wear the mask I wore during the week. There was no school. No homework. No anxiety. It was my sanctuary – and it existed outside of the rest of my life. A little bubble which protected me, but never integrated. As I looked back at my treasures yesterday, I realised that while I can put ages and dates to most of the things I boxed up at 18, I can’t do that for the things which had been in that room at my Dad’s house all along.

They exist in a part of me which escapes time. Weekends and summers blur into one. A decade of my life which doesn’t quite fit with the rest. Ten years of a part of me remaining static, while the rest of me grew and changed and matured. Treasures and trinkets which have so many memories, yet no age.

And the reminder of when my lives started to merge again lies in an envelope. That brief, strange few months when my two lives crossed in the other direction. When I would drive, once a fortnight, to spend the weekend with my mum, and then return home. And it’s funny really, because I had forgotten those months even existed. Forgot that part of me had even been there, until a black envelope reminded me of the Christmas when I had been free, and mobile, and ready to embark on a life where I could merge those two lives into one in my own time.

The greatest gift I never used was for a day at Brand’s Hatch. Before I had a chance to go, my licence was gone. The seizures had stolen my mobility, and that future. And in a way, they stole my past, too. Because there it stayed, in boxes. Left tucked away, while life took me further and further from the girl who never let go of them.

Further, but only in time. Because the thing which struck me most of all, as I looked over my old treasures, was how much I am still that girl today. The chaotic mix of things I owned and treasured all match the loves and interests I still hold dear. Books, a telescope, a typewriter, jigsaw puzzles, cut-outs from computer game boxes. Memories of hours spent making miniature worlds. Piece by piece it slots in place. And it’s funny, really, that I spent so long trying to make sense of who I was, when I never really changed at all. I’ve spent the last twenty years in an identity crisis of one sort or another, and as I slowly surface, I think I’m finally ready to start letting go of some of those boxes.

I don’t need to keep them all, slowly rotting in a shed or in a loft. I’ve had them all along. I’ll keep my black envelope though. It’s too easy for me to forget those few months where both halves of me came together again, and allowed me to grow into my future. And who knows. Maybe one day I’ll go to Brand’s Hatch after all.

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Well thanks for that…

I got a somewhat long letter today, forwarded to me by my MP. It’s from Paul Burstow, about my letter regarding epilepsy care. Interestingly, she declined to comment on its contents, saying they ‘spoke for themselves’. I’ll see if you agree. Apologies in advance for what will be a long post…

Dear My local MP,
Thank you for your letter of 28 October to Andrew Lansley enclosing correspondence from your constituent J. Hill of address about epilepsy services. I am replying as the Minister responsible for policy on long-term conditions. 

I was sorry to read of Ms Hill’s condition, and I can understand her interest in seeing improved services for people with epilepsy.  

We know that there are historic weaknesses in the commissioning of services, to which the epilepsy charities and stakeholders have drawn attention in recent reports, correspondence and Parliamentary Questions.  

As Ms Hill is aware, the urgency for change is all the greater because these failures carry huge costs, as well has having a massive impact on the lives of people with epilepsy.  

There are also potentially very significant savings from unplanned emergency admissions to be made by getting this right, which go hand-in-hand with improvements in outcomes, including life expectancy and a reduction in the number of tragic sudden deaths from epilepsy.  

In the past there was inconsistency around the country in the provision of services for epilepsy, which compromised the quality of treatment and reduced the options available to people living with epilepsy. That is why we need to improve commissioning, and clinical commissioning groups (CCGs) can help us involve patients much more in how local services are shaped. 

Our plans for the modernisation of healthcare services centre on a more localised NHS, with the NHS and CCGs working with patient groups, and making decisions based on a clear understanding of local need.  

To commission effectively, CCGs must understand the needs of patients with epilepsy, their families and carers. To do so, they need the support and expertise of patient groups to inform and advise them. Epilepsy charities have worked to highlight failings and raise concerns about the education needs of children with epilepsy.  

With specific redard to the Epilepsy and Related Conditions Bill, the principles behind it are at odds with the focus on outcomes and devolution of decision making at the heart of the Government’s reforms. it envisages an old-style command-and-control mechanism that directs every locality to commission specific services in very specific ways. However, our stated aim is to support, empower and trust professionals, such as teachers, to do what they do best, rather than prescribe or dictate from the centre.  

The proposal to make epilepsy a Special Educational Need (SEN) would also undermine the Government’s Green Paper response to an Oftstead report that highlighted misidentification of SENs. It would also suggest a particular response by schools to children’s impariments at a time when the Government is emphasising that schools should be freed to use their professional exzpertise to respond to children’s needs in a way that they feel is best.  

The proposals in the Epilepsy and Related Conditions Bill would promote a ‘medical model’ of SENs, with the implication that children would need a medical diagnosis to access a specific package of support rather than looking at each individual child, the particular nature of their difficulties and their edcuational need and social context before deciding on the support they need.  

Regarding Epilepsy Specialist Nurses (ESNs), the National Institute for Health and Clinical Excellence (NICE) has published guidelines that state: 

ESNs should be an integral part of the network of care of individuals with epilepsy. The key roles of ESNs are to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the individual, families, carers and, in the case of children, others involved in the child’s education, welfare and well-being.

However, local NHS organisations are responsible for the skill mix of their workforce, including provision of specialist nurses. They are best placed to assess the health needs of their local community and must have the freedom to deploy staff in ways appropriate to the local conditions. 

If Ms Hill wishes to raise concerns about the lack of SENs in her area, along with her concerns about waiting times for specialist appointments, I would recommend that she contacts the [Local Heathcare Trust] The contact details are:  

[Contact details and paragraph informing me about PALS and appropriate contact details for them] 

I appreciate that this reply may be disappointing, but I would like to assure Ms Hill that the Government is wholly commited to improving the lives of those with epilepsy and of those who look after them. 

Yours sincerely
Paul Burstow.

So there you have it. I’d like to keep my opinions and response to this for another entry (this one is long enough already), but feel free to share yours in the comments below.

Stalling

I’ve been stuck, the last few weeks, stuck on a repeat loop where nothing ever really improves. Nothing’s getting worse, either, but when you get to the point where you’re thinking that’s a good thing, you know life has taken a fairly rubbish meander. In other words, it sucks.

I’m still cracking on with the things I need to do – wedding planning, house organising (with the help of W – we bough a bookcase for our DVDs the other day which he assembled. When we had got them all in we wondered why we hadn’t done it before…), and child rearing. All the “ing”s. All except for “improving”.

My seizures are still on average happening once a day, usually afternoon/evening time. I think I went a day without a few days ago, but, really? That’s nothing special. A year or so ago I was hoping that someday I might get my driving license back – now it’s looking more like a pipe dream with every day that passes.

To get my license back, I would have to go a whole year without seizures, then apply to the DVLA, who would check with my GP and specialists to make sure this is true, and then I’d have to go through the rigamarole of updating my details and getting it back. All without having any seizures at all. Any time I have one, even a “little” one, I go back to day one of my 365 point countdown.

Then, of course, even if I did get it back, I’d have to re-hone my driving skills. It has been six years since I last drove anywhere. Would you trust me behind the wheel? I certainly wouldn’t. In the even this happens, I will be getting a couple of driving lessons as a refresher.

Actually, I’m going to stop dwelling on this one. I’m starting to remember how it feels to have the freedom of a car, and it’s just making me miss it all the more. I get by well enough with public transport. It will get better when M can walk and we don’t need a buggy. And better still when W can drive, assuming we can afford a car. At least we have family nearby who can help us if we really need transport at non-bus-friendly hours.