Epilepsy and me

Over the past week, I have been trying to understand why the attack on Israel has left me so personally bruised and enraged living thousands of miles away from the horrific scenes. What has happened makes no sense at all, but somehow we all have to make sense of it. This is what I concluded.

My feelings towards the events, of course, have a very personal dimension. The Jewish community is closely interconnected – there is only one degree of separation. I have friends with family or friends who have been murdered or kidnapped. This isn’t like the Manchester Arena attack or 9/11. It isn’t distant horror. The horror is far too close. Of course, every life matters, but it just matters more when you know them or are connected to them in some way. I also have friends and family who have been called up. It’s an awful anxiety to live knowing that their world is on edge.
However, as I tried to understand my reaction, I knew it was more than that. It was also because I have come to feel unsafe in Britain. The other day I was walking back from synagogue when a car stopped. I felt uneasy. What would happen if the driver was an antisemite? The driver asked me for directions to a nearby landmark; I gave them to him and he drove off. They’ll no doubt never think twice about that conversation again. I’ll remember it for the rest of my life. I shouldn’t have to feel afraid because I am a Jew living in Britain, but I did. I’m actually third generation born in this country. My ancestors left Russia and Poland to come here after the pogroms at the beginning of the twentieth century. It’s something I’ve always known but hasn’t seemed relevant to my life. It does now.

But as the week went on I began to question my whole identity and what it means to be British. What are British values? They come slowly off the tongue – democracy, freedom, a belief in a welfare state, multiculturalism, a history that is not mine and and, what else? I’m not sure. Are these values that are central to my core? They seem a bit bland. I could be anywhere. But when I think about Israeli values – these come a lot more rapidly – tenacity, not giving up when the going gets tough, innovation, family values, a sense of morality, thinking outside of the box , helping others out in times of need, education being essential for progression, the sanctification of human life and a history that is mine. I could go on and on. These are my values. This is my core. It doesn’t mean I want to live in Israel. Culturally I’m British. This is my home. But it does mean that I am much more closely connected to Israel than I thought I was.

This week all around me people have been questioning the values of Israel and in particular, it’s morality. By implication, they are questioning the morality of Jews everywhere. Before these atrocities, I would have said that I thought Benjamin Netanyahu, the Israeli Prime Minister, had a loose sense of morality. He’s been accused of bribery, fraud and a breach of trust and faces criminal proceedings. In addition, he heads a government that is attempting to disrupt democracy in Israel. However, a loose sense of morals isn’t the same as not believing in the value human life. It certainly doesn’t mean that he, and the Israeli Defense Force (IDF) are guilty of purposely killing innocent civilians out of retribution – just to get back at Hamas, like some sort of childish spat. The implication is of course, that Jewish people worldwide think that they are more important than everyone else. That we value ourselves more than we do others. That just like Hamas we are evil to the core and need to be destroyed. That the Jewish way is not to value life. It’s not true and somewhere along the line I’ve taken it personally that others think that it is case.
The truth is that the Israeli’s don’t have a choice. They have to prevent this from happening again. . The IDF might not make all the right decisions on the ground. People can disagree with their military strategy. But their overall objective of getting rid of Hamas should not be questioned. Israelis, whose values I share, are not evil in the way that members of Hamas are.

Last Saturday in Israel, they should have been celebrating the festival of the Rejoicing of the Law. Instead, it began a period of devastation, destruction, and, for me, reevaluating everything that I hold dear. I have concluded that human evil is too close to home, that life is very precarious and that I’m not a British Jew after all, but a Jew who happens to live in Britain.

In my blogs I often talk about epilepsy, mental health and how I scrape around endlessly trying to find something that will help my cognitive deficit.  It sometimes seems that all I do is hit brick walls. But not all of it has been dead ends.  Undoubtedly the ketogenic diet has helped but other things have been just as important to my road to recovery. Being grateful for the important things in life helps.  Connecting with others in a similar position helps.  Writing helps.  Faith helps. I will still go on looking for medical interventions but I realise that it is not just this that can move me forward.

One thing that has evaded me is work.  Everyone needs a sense of purpose in their day, whether it is paid or unpaid.  But the question that arose for me was what can I do?  It’s tricky if you have a memory problem to work.  But fortunately I am not one that gives up easily.  If there is a difficult problem I just don’t seem able to stop myself from trying to find a solution.

I started to see a job coach from Herts Mind Network’s Building Better Opportunities programme and, with a bit of support, I hatched a plan.  It turned out to be not that complicated.  I decided that I could ghost-write ordinary people’s autobiographies.  This was something that I could be passionate about.  Everyone has a tale to tell and family and friends love to hear them.  With recording apps like Otter, which can instantly transcribe interviews, as well as on-demand printing and scanning of old photos it has now become possible to publish a small quantity of books based on actual transcripts and using photos from an bygone era for a relatively low cost.  I also knew that many people wanted to write their loved one’s autobiographies (or write their own) but were becoming a bit unstuck because they didn’t have the time or skills to see the project through. 

This is where I felt I could come in.  I knew that I could interview – in my previous job as a social researcher I interviewed people about issues that affected their lives. I also knew that I could write. Or at least that is what other people told me.  However, the bit I would have trouble with was project management.  You kind of need to be good at planning, decision making and problem solving to take on such a task.

And that is when the magic came in.  Any good story needs a little bit of the unexpected. A surprise that seems miraculous. However, in this tale it came from a most unlikely source – one that I don’t think anyone would ever guess.  It is called The Department of Work and Pensions.  I will say that again and be a little bit more specific because I imagine that some people are a little bit gobsmacked by the inclusion of those words in such a tale: My fairy godmother is called the Access to Work (ATW) scheme run by the UK government’s Department of Work and Pensions.  The scheme’s role is to help disabled people or those with a health condition stay in work (note that it doesn’t attempt to provide them with provisions to get into work, but that is another story).

However, maybe the real fairy godmother was the method in which I found out about the scheme – Facebook – because ATW seems to be hidden by an invisibility cloak that medical and other professionals have yet to uncover.  Nevertheless, once I had got through the two main barriers for using the scheme ie 1. finding out about it in the first place and 2. the inevitable bureaucracy, ATW were in fact able to give me quite an extensive level of support to start my own business.  They have given me funding for a PA, specialist software programmes as well an executive function coach to help me find coping strategies to enable me to work.  In fact, for reasons I frankly find bizarre, ATW are giving me more resources to help me cope with my disability than any medical professional I have ever seen. 

I have now completed my first autobiography called ‘Linda – A Grandmother’s Story’. It’s about my mum. I interviewed her eight times and then wrote the story using the tone of voice that she used during her interviews. I believe she is a most worthy person to have a book written about her.  Before writing the book I knew that my mum wasn’t the sort of person to bear a grudge; she accepts life’s challenges and just gets on with things.  I think that this comes out very much in what I have written. Of course my mum has told me many many anecdotes about her life over the years but I did learn some new things about her whilst writing the book.  I found out who her favourite parent was, what happened on her honeymoon and how she felt about being a young mum.  It also gave me the opportunity to write down all her anecdotes in one place.  Last week I read the book to my children and they thought that it was fascinating. Although I knew much of what was written, I was surprised by how little they knew.  Now they can keep this precious book and, please God, show future generations. I’m sure other family and friends would like to read it as well.

Now with a prototype and support for me in place I would like to ghost-write autobiographies for other people.  I have built myself a website because these days it seems impossible to be a business without one. But more importantly, I have thought about how my business would be different from others doing the same thing.  I decided that I would include many more copies of the autobiographies in my packages than other companies who mostly offer four books.  I think that there would be many more family and friends who would be interested in reading them so I’m including 25.  But for relatively not much more people could ask for extra copies because I think that the books would make a great going home present for guests at a special birthday party. I’m also going to include the full audio and transcripts of the interviews as well as a PDF of the book so it can be shared more widely.  It would of course, be imperative that the ‘author’ is happy with the final book but I also believe that other people close to the author need to be comfortable as well so I will give strategies to try and ensure that this happens. 

I have called my business ‘Prashker’.  It is the original surname of my grandfather who died before I was born.  To me, the name speaks of a generation of a time gone by whose stories were not written down and my hope is that I can help some people put their lives on paper for their family and friends to share. Please look at my website if you want to find out more.

I am always heartened when I look through the posts and comments on the various epilepsy Facebook groups.  There are, without exception, always signs of courage and hope.  There are, of course, people who are depressed, angry and frustrated – it is quite easy to feel that way if you have epilepsy, or indeed any chronic condition, but hope, strength and often, faith, always shines through.

Let’s make no bones about it – epilepsy is an awful condition to live with: it has a history of thousands of years and still not enough is known about it; it’s unpredictable – seizures can take place at any time day or night and leave you with scars for life as well as anxiety that can cripple.  In my case, it leaves me with a cognitive function that is so impaired that mostly I feel detached from the world – unable to process the events that are happening around me. On a visit to a specialist, I often feel like an experiment – ‘Try this medication, it might help,’ the neurologist says (but I know that it might not).  The doctors don’t offer me the Hope that I crave.  So why, I think, does a Facebook group full of people (and their carers) with epilepsy show signs of positivity and resilience?  Why is there the will to fight on when many of these people have been given such a difficult hand.  It puzzled me but I think I have found the answer.

Recently, the Jewish people lost one of its’ greatest leaders of our generation – Rabbi Lord Jonathan Sacks.  He died of cancer at the age of 72.  As an observant Jew, I like hundreds of thousands of people around the world, felt a profound sense of loss at his passing.  Here was a man who had made the truths of Judaism not only relevant to today’s modern Jews but to non-Jews as well.  Here was a man who not only wrote about these truths, but lived them with humility, integrity and honesty.  ‘Now that he has gone’, I thought, ‘how am I to understand how his teachings are relevant to me?’. But the fact was, that even though I have read some of his works and even though I had actually been to hear him talk, I didn’t know.  I knew he was great but I didn’t know why.  Because that’s what epilepsy does to me.  It’s screwed up my frontal lobe – the circuits inside it constantly misfire – and however much I want it to, the stuff that I read or hear, doesn’t always go in.

But then I came across one short idea of his that really resonated with me and helps me understand how I live with my epilepsy.  In an interview on Youtube ^[1] Rabbi Sacks was asked that timeless question which never seems to have a sensible response, ‘Why do bad things happen to good people?’ and he gave a very sound answer: ‘God does not want us to understand why bad things happen to good people because if we ever understood we would be forced to accept that bad things happen to good people and God does not want us to accept those bad things.  He wants us not to understand so that we will fight against the bad and the injustices of this world and that is why there is no answer to that question because God has arranged that we shall never have an answer’. 

Thus, Rabbi Sacks was able to articulate something that I strongly feel, and maybe other people with epilepsy feel it too – that although this bad thing has happened to me, it doesn’t mean that I should sit back and accept it.  The world is ultimately good, and I have to find the courage and strength to seek the justice that I desire.  Indeed that is what God wants us to do.  If one doctor doesn’t know the answer, maybe another one will.  If one treatment doesn’t help – maybe there’s another one.  If one way of thinking about my illness isn’t helping, maybe there is another way that could help.  But there is another way.  Doctors don’t tell you that.  They don’t encourage you to fight.  It’s difficult for them to give you a sense of Hope when they don’t have all the answers.  So, you have to find that sense of Hope yourself.  And that is ultimately why I think that people with epilepsy have so much courage (notwithstanding histories of depression and distress) – it is because we cannot sit back and accept our situation – we have to fight on and battling in that way makes us strong. 

sharonrossblog.com

[1] https://youtu.be/0rW1znjmPFE

As published in the Jewish Weekly 24/12/20

I was like most of the world, also thinking about coronavirus and so decided to write my first public blogs in over six months about my thoughts on it.  My musings on feminism will have to come later……If you were asked what epilepsy and coronavirus have in common, you might look perplexed and then answer ‘not a lot’ and you’d be right – after all, one is a neurological condition and the other an infectious disease.  Physiologically they just work in completely different ways.  However, as someone living with epilepsy, in this blog, I would like to argue that actually living with epilepsy and living in a pandemic are not so different.  Here are five reasons why I think so:

1. Both the pandemic and epilepsy cause anxiety

The pandemic causes anxiety.   Because of COVID-19 the world has woken up to the fact that we are not in control, we can do our best – we can social distance, wash our hands, invest in vaccines, but ultimately we are not in control of our lives.  For many, many people this is now causing a debilitating anxiety that might take years to recover from.  People with epilepsy have known this feeling of being out of control for years.  We can take our meds, get a good night’s sleep, explore alternative therapies but ultimately, ultimately a seizure can happen, anytime and anywhere and the knowledge of that fact can create anxiety which is overwhelming.  This is one reason living in the pandemic and living with epilepsy are similar.

2. We don’t know enough about either condition

Right now, billions of pounds are being spent to find out more about coronavirus – we’ve made great strides but we still don’t know how long immunity lasts, when we will have a vaccine and whether there will be a second wave[1].  There is still a huge knowledge gap.  Considerably less has been spent on epilepsy research throughout the thousands of years that the condition has been around, yet some fundamental questions remain – six out of ten people with epilepsy don’t know what caused it, one third of people with epilepsy can’t find medication that works and there isn’t a cure for the condition[2].  That is a lot of unknowns and the scientific unknowns are one of the similarities between the two conditions share.

3. Treatments for both conditions have nasty ‘side effects’

In the UK a minimum of 40,000 people have lost their lives due to coronavirus and undoubtedly there will be more.  Social distancing is one of the most effective ‘treatments’ for the pandemic, but it creates ‘side effects’ which are difficult to stomach. These ‘side effects’, as we know, include millions losing their jobs and all of us losing our personal freedoms.    They are necessary, to prevent more loss, but they are also a bitter pill.  Although it is somewhat different, the most common treatments for epilepsy – medication and brain surgery – for some people can have highly unpleasant side effects.  For medications these can include impairment of cognition, changes in personality and drowsiness, to name but a few.  The risks from brain surgery can be more serious.    The treatments don’t always cause the side effects, just like the social distancing measures don’t always create misery for those adhering to them, but the risk that they can occur is there. We don’t know enough about either condition to reduce these ‘side effects’ from these treatments – to make them more nuanced, more particular to each person who has the potential to suffer and thus it is a commonality that both conditions share.

4. Both create financial hardship

Coronavirus has caused financial hardship to millions of people and, by all accounts, will continue to do so, probably for years to come.  In a similar vein and for various reasons, people with epilepsy suffer financial hardship – they have one of the lowest rates of employment among disabled people. In 2019 the Office of National Statistics found that just over a third (34%) of people who identified epilepsy as their ‘main’ health condition are in employment, compared to 76% of all working aged people [3].  Thus, part of treating both coronavirus and epilepsy should be to help those affected get back to work and it is another reason why they in some way can be considered as similar.

5. Travelling is a problem for people with epilepsy and those living in the pandemic

Up until recently millions of us have been urged by the government to ‘stay at home’ and only take short trips that were necessary.   Now we can go out – but we have been told to remain vigilant – the virus is still out there  –  we shouldn’t travel in a car with people from another household; we should only travel by public transport if it is absolutely essential and, if so, we should wear a mask and if we are walking in a public space we should stay two metres apart from those that you don’t live with.  But some people with epilepsy have always had to be aware of the risks that they take when they travel. Some people with epilepsy are told that they cannot drive and for others even going on public transport, walking or even cycling can carry risks.  The potential for a seizure is always there. This isn’t to say, people with epilepsy shouldn’t go out, just like for the majority of people living in a pandemic doesn’t mean that they shouldn’t go out, it’s just that in both when travelling there can be a worry that something unexpected could happen.

However, the purpose of these musings is not to get everyone depressed. People with epilepsy, as with people with many other conditions, have been living for years with this way of life with little fanfare.  For them, like me, it’s been a struggle.  But what I have learnt along the way is the only way to deal with these challenges is to get on day-by-day and face the world that is in front of me, as best I can – no more or less.  It’s possible; it is difficult; but it is possible.  And in the same way with coronavirus – it is difficult – it creates all sorts of insurmountable challenges but I am sure it is possible for us all to overcome them.

sharonrosswrites.com

[1] https://www.thetimes.co.uk/article/coronavirus-what-we-know-after-six-months-fll7r8j9k

[2] https://www.healthline.com/health/epilepsy#facts-and-statistics

[3] https://www.epilepsy.org.uk/employment-campaign

Every conversation I have these days seems to be a microcosm of Brexit – the UK’s seemingly never-ending attempt to leave the European Union.  A dinner conversation about something mundane and inconsequential can in a split second turn and all of a sudden voices are raised; those involved in the discussion start to look agitated and neither side is going to give in and I think to myself ‘This discussion is just like Brexit – it is no longer about the issue in hand – it’s just about egos and who can win.’ I also have Brexitish discussions with myself about logistics – it starts with ‘How do I get child A to place B when child C is at place D?’ and then I end up just saying ‘I know all the facts but I haven’t been able to come to a conclusion.  And now all I am doing is repeating the facts to myself hoping to find an answer which I can’t do at the moment.  I’m driving myself mad.  I’ll stop talking about it now and see if we can come up with a way to resolve this tomorrow.’

And I also see a microcosm of the Brexit discussions with my own medical situation.  For over three years now I’ve been writing this blog about how I find life generally difficult and I’ve been tirelessly searching for a solution to make life easier for me.  But I haven’t found one.  It’s not that I haven’t tried and it is true that some progress has been made. But not as much as I would like.  I fear, even, that these blogs have just got a bit boring and some people have dropped off along the way because my story doesn’t seem to be getting anywhere.

Nevertheless, I have decided to take a different approach to Boris Johnson, our somewhat error-prone Prime Minister, in dealing with my, well let’s face it, slightly less complicated situation.  In February this year (on the 21^st to be precise) I made myself a little ‘withdrawal agreement’.  I told my children very sincerely that in a year’s time I bet that I would be able to drive. (My eldest daughter didn’t think I would remember this bet to myself so she made me a little poster – see above  – to remind me of it, which we put on the whiteboard in the kitchen).  I knew that when I made this ‘agreement’ there were a lot of variables outside of my control – I would soon be withdrawing from an anti-epileptic, after a period on a new medication, and in this period of withdrawal I knew that legally I would not be allowed to drive.  I also didn’t know how I would react to the change in medications and if I had a seizure, as a result of changing medications, I knew that I wouldn’t be able to drive for another year. Even if the change went well, I knew that before I could get my driving license back I would need to write to the Driving Licence and Vehicle Authority (DVLA) to get their authorisation for my licence – and this is a bureaucratic process that can take some time.  Nevertheless, I gave myself this target because it’s good to set a goal; to focus on the possible.

However, I now know that I didn’t have all the facts to hand when I made my ‘agreement’.  It turns out that not only am I not allowed to drive whilst withdrawing from an anti-epileptic medication, but the DVLA also say that, because of the seizure risk, I am not allowed to drive for six months afterwards[1]  If I had known that piece of information I might not have made the ‘bet’ in the first place.

But this is where I, and indeed I am sure many other people out there, differ from Boris in trying to resolve a tricky problem (however, as I say the problems Boris has do seem to be trickier that mine).  Boris believes that the UK has set itself a ‘withdrawal date’ – the 31^st of October and whether we have an agreement with Europe or not we will leave on that date, even if it means that the deal that we get on this date (a so-called ‘no-Deal’) isn’t very good. I believe that I have to be flexible with my target date for resolving my problems. Because I won’t be able to drive by 21^st February next year, it doesn’t mean I have failed – it just means I have to re-evaluate my strategy but I still have to keep on going. I have come to realise that I might not get everything that I want – maybe I’ll never feel safe enough to drive (even if the DVLA said that I could); maybe my memory will never be what I want it to be, but I do still believe that there is a better way, that I’ll get a better deal, even if not all my problems will be resolved.  But, unlike Boris, I believe that the only way that I can do that is if I am flexible about the date by which this will happen and compromise over what I am hoping to achieve.

In other news:  This is how the current episode in this almost boring saga is going now:  I am still withdrawing from my old medication.  The side effects from medication withdrawal, it turns out, are quite pronounced and there is little research about how it impacts on patients.  As I said, under the supervision of my neurologist I slowly increased my new medication and then once this was established, over an extended period of time slowly withdrew from the old medication. The first three days of each withdrawal had me wiped out – I went to bed and didn’t make much sense.  Once I regained enough energy I went through the whole process again.  Right now, I’m on the lowest therapeutic dose of my old medication and am soon going to increase the dose of my new medication further.

And the result?  I don’t know.  I’m not sure if all this effort and the cost the-medication-that-an-NHS-doctor-prescribed-but-the NHS-will-not-pay-for is making a difference.  Some people are saying that since being on the medication I seem stronger. But I worry about the impact of the medication on my brain – it seems to me that an increasing amount of time the words that I mean to say are not coming out of my mouth.  It is difficult to know if there are any advantages to my current strategy to finding a solution to my problems.  However, I must fight on, with my flexible approach.

Last week I went to see my neurologist for a medication review and I asked her how I would source my new medication in the event of a no-deal Brexit.  I knew already, from the Epilepsy Society website, that the pharmaceutical company were keeping a six-week supply of my old medication (which quite frankly is almost like saying that they are not stockpiling meds) [2].  My neurologist had no information about the stockpiling of my new medication and I emailed the pharmaceutical company but they haven’t responded.   So, I do hope that Boris Johnson knows a thing or two more than me about how to resolve a tricky problem (without any medication I will almost certainly have a seizure).  Millions of medication-dependent people, like me, are relying on his belief that he can.

[1] https://www.gov.uk/epilepsy-and-driving

[2] https://www.epilepsysociety.org.uk/contingency-plans-epilepsy-medications-case-no-deal-brexit#.XYi7uyhKhPY

I am now approaching the batmitzvah of my eldest daughter and can foresee that this year my family will spend and receive more on gifts than the norm. As such I thought it prudent to write myself a Present-ing Policy. For those of you who have never seen a Present-ing Policy before – neither have I – but I do think that they are circulating around somewhere in most people’s heads – I’m just writing mine down to clarify my thoughts on this important matter.

This policy makes reference to both giving and receiving gifts and applies only to large gathering such as bar/batmitzvahs and weddings herewith known as ‘simchas’. Other Present-ing Policies towards events such as small family gatherings, the birth of a new born baby, end of year teacher gifts won’t follow because the whole thing will just start getting really tedious.

The Present-ing Policy is based on the premise that presence is more important that presents. A guest has been invited to a simcha not merely to make up numbers but because the host really feels that they want them to be part of the affair. A present is just a happy by-product of the occasion.

My policy states that:

1. I am anti-reciprocation. There is a feeling that if someone gives a certain present to you (or your family member), by extension you have to give the same value of a gift back at the present-givers simcha. This is not my policy. Reciprocation suggests that present giving is some sort of weird long-term saving device where you spend money every so often in return for getting a lump sum when it’s your simcha. However, there are many reasons – see section entitled ‘Influences on Giving Behaviour’ – where I might decide to give more or less than I (or my family member) has received and I reserve my right to do this.

2. I acknowledge that there is a ‘going rate’ for gifts but will try hard not to be pressurised by it. The ‘going rate’ is defined as the amount spent on a gift (including the gift of money) which is considered, by the local population, to be the acceptable rate. To try to ignore the fact that there is a ‘going rate’ is akin to trying to ignore inflation. The price of things over time goes up, and that includes presents. Thus, I recognise that there is a ‘going rate’; I know that I feel compelled to give it, but my policy states that I reserve the right not to give it.

3. When giving and receiving gifts and invitations to these events I will encourage gratitude. It really is an honour to be invited to a simcha; it’s an honour to be able to invite someone; an honour to receive a gift and an honour to be able to give one. The problem arises when many invitations/ presents happen at the same time and the matter can get out of hand if the right attitude isn’t projected onto the proceedings – people can become blasé about the whole thing. It’s important to be thankful for each and every invitation and gift, even if, in this atypical year, it all seems to happen at once.

4. I will encourage being non-judgemental on the receiving end of gifts. Often Excel spreadsheets (or Google Sheets) entitled ‘Presents’ are drawn up after an affair on the pretext that one can use this resource to write thank you letters and so you know how much to reciprocate if the gift-giver has a simcha. However, what really happens is that the spreadsheet is used as a missile for judgement – ‘Oh, Person X was very generous but Person XY, especially considering their circumstances, was not’ etc etc. As stated above presence is more important than presents and such statements can be counterproductive to the enjoyment of the whole affair.

Influences on Giving Behaviour

As a point of reference here is a list of possible influences of giving behaviour: Number of invitations to simchas received by the gift-giver in given period; income of giver; attitude of giver towards gifts (some just like to give more than others irrespective of income – there’s no right way – different people spend money on different things); perceived ‘going rate’ of gifts (may vary depending on who you ask); gift-giver remembering at the last minute that they have forgotten and they dash to the cashpoint which only has a denomination of notes that means that they can only give more or less than they wanted to. Also, in some circumstances the giver accidentally deletes the spreadsheet listing how much was given to your family member for their simcha and therefore although reciprocation is the aim, it is not possible and a guess has to be made.

NB I reserve the right to not adhere to this policy 100%. Some of it is quite difficult. It should be noted that it is common practice of policy makers not to adhere to all the policies that they create.

Sharonrosswrites.com

I’m on the spectrum. The present spectrum. I haven’t seen anyone about it but I have self-diagnosed myself as a three on the ten-point scale. ‘What’s this about, Sharon?’, you ask yourself. Well it goes like this: Everyone is on the present spectrum – if you score a one then when somebody asks you ‘What do you want for your birthday?’ you say ‘I don’t know. Nothing really, I’m fine’. Your loved one/ friend knew that this is what you were going to say and buys you either a gift voucher (which stays in a drawer until it expires/ you spend on someone else) or flowers (which die through malnutrition) or a pair of socks/ smellies for the bath (either of which you give to someone else). However, if you are a ten on the spectrum then when someone asks you the what do you want for your birthday question you get out your iPad look down your ‘present list’ and reel off a couple of options and offer to send hyperlinks where said person can buy the gift.

As I said I have self-diagnosed myself as a three on the spectrum – I don’t resist presents but I don’t have a ready-made list. I have to think very hard about what I extra item would give me joy, when asked. Also, although I realise that buying birthday gifts is a long-standing tradition – it’s not something I expect that those nearest and dearest have to get me – I just figure it’s not a prerequisite of them showing that they care. Part of my relationship with gift giving is because I have memory and processing problems and even if I saw the ideal thing that I wanted in an advert I wouldn’t remember it anyway (not a bad thing) but I also realise that part of the reason why I am rated three is because I have a a natural tendency not to want so many things. It’s innate. And I believe that other people’s relationships with gift-receiving is also innate as well.

Now I could get all grouchy about this. I mean, as I explained in my last blog regarding gift-giving at children’s birthday parties, there is an assumption that if you give a present to someone, they will spend a similar amount of money on you in return. The problem is in the adulting world is that even if you say that you only want to spend a certain amount of money on a gift, in truth, the way it works out is that the value that you get from your gifts depends upon where your fall on the present spectrum. Thus, an adult who is a ten on the scale is likely to request something of a higher value than an adult lower down on the scale – who indeed might not request something at all. So, in the end what happens is that, financially at least, those lower down the scale over a year end up making a net loss from this presenting game.

However, I have decided not to get grouchy about all of this. As a great book (the Torah) says, ‘Who is wise – he who learns from everyone’. And although I’m not wise, for the sake of personal growth, it would be useful for me to learn from those further up the spectrum. I mean they have got a point – every now and then it is nice to treat yourself. My inclination is not to, but perhaps that’s why it’s especially important for me, and others like me, to have a birthday (apart from the obvious reason of being reminded of my age) – so I can go outside of my comfort zone and just be spoiled a little bit. I don’t think I’ll ever reach a ten – I’m a three because this is my innate level – but I could try to shift to a four. It would be hard but I could try.

Also, somewhere in this great birthday giving hullabaloo I seem to have lost the plot and forgotten why we give presents. I have 21 members of my immediate family (including nephews/ niece, in-laws etc) and the present giving thing now just seems like an administrative process of depositing money into other people’s bank accounts after they/ their parents have sent in their requests. As someone with memory problems, this often seems overwhelming – but even if I didn’t have these difficulties I think somewhere in this administration process and the fact that it is assumed that the gifts will be given I have forgotten the meaning of gift giving and that is to be thankful for that other person in your life and to want to make them feel special, for one particular day.

Thus, whilst I am happy to disclose that I am a three on the present spectrum I do think that for the sake of personal growth I could try and move myself up the scale just one notch and, in around all the confusion that I find the present giving spectacle, I should try and refocus and remind myself why we do it – and that is to show the special people that we love that we care.

Sharonrosswrites.com

Ps – Happy birthday Shona and Liz!!!

I would like to tell you about a bit of a scandal that I am involved with; it’s something I have been part of for a very long time; lots of people, including my family and friends are also implicated; it’s not illegal but on the other hand it’s not economically sound – I call it the Great Money Exchange Project (GMEP). I would appreciate any feedback as to how I can get myself out of it.

 About the project

The background to the Project is this: Like many others, each of my three primary school-aged children, get invited to school-friends’ birthday parties.  I estimate, that over the course of a year, because they don’t go to all the parties they are invited to, between them they attend 30 parties. I’m quite tight and I say this publicly without embarrassment – I spend, on average, £5 a present – although I have noticed that as the kids get older £10 is the going rate. I’m all for getting things on offers or in a sale, or even – shock horror – giving another child a gift that my child has received but doesn’t want – but for the sake of argument we can say that’s 30 parties, £5 each present = £150 spent on birthday presents per year.

 I can justify it. Sort of…….

Now, in my very, very cynical mind I could justify this spending because for the reasonable price of £5 per party my kids get to have fun and see their friends and in return their friends will attend their birthday parties and bring them gifts.

And before some parents scream as they read this ‘You are a mean-spirited person – let them enjoy these special moments in their young lives’. I don’t think I am mean-spirited – I want my children to enjoy their birthdays – it’s a rite of passage and they look forward to it all year round. I also love the fact that it gives them an opportunity to socialise with their friends in a non-school environment and that sometimes my children go to a lot of effort to make their friends a card or choose a gift.

 But what is all this gift-giving teaching my kids….

However, my main problem is not with the parties themselves but with what all this gift-giving and receiving is teaching my children. Fundamentally, it seems to be saying two things. Firstly, it says to them that you, and all your friends, should expect to receive more things than you actually need. Because they definitely don’t need all these gifts. But secondly, it teaches them that they should sustain a throw-away economy by increasing a demand for presents that, let’s face it, aren’t built to last or retain a child’s attention for a long time. They might learn about recycling and reusing at school but what they learn in their real lives is the total opposite.

 Can a workaround be found?

It is true that some parents do understand the problems of GMEP and therefore try to create workarounds such as putting some presents aside so they don’t get them all at once. But even taking this into account it doesn’t change the fact that a child who hosts a ‘whole class’ party could receive 20+ presents (on top of the ones that they receive from their family) of which a lot of them they don’t need or even want. And that is setting them up for a life of high expectations of needless ‘stuff’. As I said this educational experience costs me, £150 per year and although undoubtedly my kids want the presents back in exchange, I’m not so keen.

At my younger daughter’s birthday party last year I did try to remove myself from the Project but to no avail. On the invite I said that instead of giving my daughter a present, parents could make a donation to the school’s Parent Teacher’s Association. However, my appeal didn’t seem to make any difference – my daughter still got her 20+ presents. Why do I think my appeal failed so miserably? Well partly because, if other parents are anything like me, they did not read the small print on the invite and also, they probably had a stock of presents bought on sale or on offer and just wanted to get rid of them.

Can you find a solution to this problem?

Thus, I haven’t thought of a way to leave the Project. At the end of the day the GMEP is endemic in the culture that I’m part of. I don’t want to say to my children you can’t have a birthday party or you can’t keep any of these beautifully wrapped up presents because of my beliefs. However, if anyone reading this feels that they have found a solution to the Project, please let me know.

sharonrosswrites.com

Time marches on whether I want it to or not.  I went to my GP and asked for the new anti-epileptic drugs (AEDs) that the NHS neurologist had prescribed.  The GP typed the name of the AED into his computer and big letters came up on the screen ‘DOUBLE RED’.  ‘Computer says no’, the GP said.  ‘What does that mean?’ I asked.  ‘Well, these drugs are expensive and, if you want them prescribed to you on the NHS, a Kafka-like panel needs to decide, based on the evidence that your neurologist supplies to them, whether the NHS will pay for it. This panel will probably know nothing about epilepsy but we just have to let them get on with it because that’s their job.  It’s also worth noting that if you lived in a different county the NHS might prescribe this medication to you without going to a panel because different areas like to think differently about these sorts of things just to confuse everyone and to make patients feel that the world is unfair’ (OK so those weren’t the GPs exact words, but that was the gist of it). ‘Going to a panel sounds like six-month process,’ I thought to myself.  ‘But I could still get the medication on a private prescription.’

So, I went back to my NHS neurologist and said ‘Can I get a private prescription for this AED that-might-help-me-but-might-not-and-nobody-really-knows-but-it’s-worth-giving-it-a-go.  And she said, ‘OK, I’ll prescribe it to you on a private prescription.’ I said that I was a bit flabbergasted because I thought that she would have to write a letter to a private doctor so that private doctor could write out a private prescription. ‘I can write it,’ she said. I don’t want to make anything more difficult for you’ (these were her actual real words and even I remember them and I really did feel like giving her a big hug because sometimes it seems like some doctors do actually want to make things more difficult for me).  ‘However, I have to let you know that even if the new drug does work for you it doesn’t mean that the panel will decide that the NHS will pay for them.  The panel makes their decision based on the evidence provided before you start taking the meds.’

At this point I must thank my parents who have decided that it is worth spending my inheritance on me now by paying for these drugs and all the other non-NHS-funded treatments I have had over the years, whilst they are alive to potentially see the benefits (It goes without saying that this is not the only thing that I should thank them for and there are millions of others).  The amount of money that my parents have spent on these treatments is not enough to warrant an appeal via a Go Fund Me or the like but, on the other hand, the costs are probably prohibitive to many people with epilepsy[1]). Thus, with my parents financial (and other) support I could not have got to where I am today. The new drug costs £175.01 a month on private prescription compared to £43.75 for the one I am currently on.

I made some precautions before starting the new drug – I bought a fixed landline as we didn’t have one already.  Changing meds is a known seizure risk.  I was concerned that if my mobile was lost (this happens roughly 82 times a day) or the battery was dead (seven times a day) if my husband wasn’t with me and I had a seizure my children couldn’t call on an adult for help.  They can now call for help.  Changing anti-epileptics is complicated.   Under the advice of a neurologist you increase the medication slowly – every two weeks changing the dosage.  So, I drew up a chart with how much medication I should take each day.  The last time I had changed AEDs, I got confused by this whole process and had a clonic tonic seizure.

So that’s where I am now – slowly increasing the new medication but still taking the old one.  I am praying that I will eventually be able to come off the old one which may have more cognitive side effects than the new drug.  Do I feel any different now that I am on the new meds?  No, but others have commented that I seem brighter and stronger.  Is that because of the meds?  I really don’t know.  It could be because by dealing with my situation I have become stronger and more resilient but it could be because of the meds or it could be a combination of both.

In other developments, my dietician has suggested that I change from the ketogenic diet to something called the Low Glycaemic Index Treatment (LGIT)[2].  It is similar to the ketogenic diet but less restrictive and for some people with epilepsy it produces the same results.  However, I discovered a long time ago that my brain is actually a human experiment and as such I should not change two variables at once (ie my diet and the meds) so I will consider changing onto the new diet after the changes to my meds are complete.

I have also been assessed by adult disability services for support around the home.  My social worker thinks that I have a strong case to have a regular support to manage my home.  Now you might be wondering why I haven’t been assessed for this support before since I have been banging on about all my problems for two and a half years now.  But what I have learnt (the hard way) is that often medics live in silos and they don’t know what services and benefits patients need or are entitled to.  So, I found out about adult disability services almost by accident and although some people have a theory that help doesn’t arrive until you are ready to receive it, I think that is a poor cop-out for people not being offered help when they actually need it most.

Thus, my journey continues, my eldest daughter will be starting secondary school this year and will have also have her batmitzvah (confirmation).  I desperately want to remember everything about these events.  So, I battle on trying to find a solution to my problems.  For some reason, even though I have tried, I can’t give up.  I’ll let you know what happens.

To see my other blogs please go to sharonrossblog.com

Sharonrosswrites.com

[1] When I initially wrote this blog I referenced a paper that said that one in eight people with epilepsy are homeless (see 1 below.  However, since then the government have also carried out research (see 2) that found that over 60% of people with epilepsy are unemployed which further evidences the fact that many people with epilepsy would find it hard to seek alternative treatments. 1. https://www.epilepsysociety.org.uk/news/new-initiative-support-homeless-people-epilepsy-28-07-2016#.XIl1HSj7RPY   2. People with disabilities in employment Number 7540, 17 May 2019 (House of Commons Library)

[2] https://charliefoundation.org/low-glycemic-index-treatment/