23. 25th February 2017 – Final Diagnosis/ Sharon goes to a job interview

Super Important Interviewer (SII):  So, Sharon, as you know you are here today to be interviewed for post of Highly-Efficient-Super-Organised-Nearly-Perfect-Person.  My first question is – Tell me about yourself.

Sharon Ross (SR):  Well, I went to a very nice doctor last week and he said that my personality can be described by my frontal lobes.  The doctor said my frontal lobes are not working properly because I have epilepsy.  This means that I find processing, problem solving, decision making and planning very difficult.  I have a poor short term. I also have a poor autobiographical memory – I can’t describe the details of holidays that I have been on or trips to the theatre.  However, the doctor pointed out that the good news is, like most people with this condition -I have above average IQ and I am sociable.  But I am depressed a lot so that doesn’t make me feel sociable and I’m not super intelligent I’m just higher than the average IQ.  Of course, no-one can be described purely by their frontal lobes – I am a mother to three very beautiful children, I am a wife to the long-suffering Michael Ross, I am a sister, an in-law, and I have some very special friends.  I am a committed Jew – although I am finding it difficult to understand why God would screw up my brain so fundamentally  – and I live in the ‘ugly on the outside, beautiful on the inside’ town of Borehamwood.

SII: ‘ Erm, thank you Sharon.  That was very honest of you.’  Can you tell me about your strengths and weaknesses?

SR: I will start with weaknesses – as I said there are many.   Most people do not know this but when you are trying to organise your children’s lives it involves a lot of cognitive or executive functions such as planning and decision making.  And these are things that I just can’t do, no matter how hard I try. If two of my children have to go to two different parties on the same day at different times I just can’t work it out.  The algebraic equation that seems to happen quite naturally in someone else’s mind does just does not happen in mine.  So in such a case I might ask my husband to work out if it is logistically possible for two (or three) different people to go to different parties at different locations and if it is possible how they will get there and get back. I simply cannot do the algebraic equation in my head to work this all out.

And my strengths –  On the plus side I am very determined.  My children always go to birthday parties, no matter what.  Even if it is difficult for me to think through the logistics – I know it is important for them – so they go.  Indeed according to my sister and brother who ‘commissioned’ a very uplifting word art picture for my 40th birthday apart from determined I am also resourceful, caring and want justice.

I can also write.  I am writing a blog about my experiences at the moment which I have received good feedback from.  I am also co-authoring a book about London City airport – the editor, my father, is very sympathetic towards my needs and likes my work.

SII: ‘Last question Sharon, – Why do you want this job?

SR: I would like this job for three reasons.  Firstly I need routine.  I haven’t had a routine for a very long time and I find it difficult to get into one.  If I had a job I would have a routine.  Secondly, I would like to be productive.  Due to my deficiencies I very rarely feel productive and maybe this job would help me feel productive.  And thirdly – I didn’t think that I would get this job but my blog has thus far purely been me wittering on about nothing –  I wanted to spark it up a bit and thought this interview would do the trick.

SII: ‘Ok thank you for coming today’.  I am sorry and I don’t usually do this at interview stage – but I am not giving you this job.  This is for two reasons – firstly, your weaknesses are too vast – although I appreciate your candour. To be honest, I am not sure if you will ever be able to get a job.  And secondly I have already got a candidate lined up who I want to give the job to – it’s company policy to have fair and open interviews.  We are very keen on equality and diversity in this company. The person I want to give the job to has been working here on a temporary contract for six months and she’s very good.

SR: So we are both wasting each other’s time then?

SII: I guess so

SR:  Well nice to meet you – thanks.

In other news

The interview in this blog was made up for the benefit of readers’ enjoyment however, it roughly parallels what a very well versed and Compassionate Professor of epilepsy at a top neurology hospital said to me this week when I went for my 99th(?) opinion (obviously he said it in a much nicer way).  As I have said previous blogs although I did think that Very Important Doctor was correct when he said I had a dissociative disorder/ functional neurological disorder I did not think that cognitive behavioural therapy or antidepressants, which is what he suggested, would treat it.  It wasn’t working so I decided to stop the therapy.  I went for yet another (private) opinion and this professor said that although there was no clinical evidence (ie EEGs or MRIs) that indicated that I had frontal lobe epilepsy the symptoms that I described to him suggested that I almost certainly did. Compassionate Professor recommended a three stage treatment plan.  Firstly I need more sleep – I feel drowsy a lot and he was the first doctor who has told me that I need more sleep. Secondly he recommended a different type of anti-epileptic medication – but he pointed out that the drugs won’t work unless I am having enough sleep.  Finally he said that I need to go and see a neurorehabilitation unit – so that I can work out some strategies to deal with my condition – however at least six months ago I was referred to one by a different doctor but this referral has not yet come through.  People that go to these units are usually those recovering from traumatic brain injury or a stroke. Really I just want the magic pill to take away the pain that I am feeling.  Coming up with strategies to deal with my disorder seems too exhausting. But the nice compassionate doctor just said: ‘You’re intelligent.  You’ll be able to work it out.’

 

14. 18th September 2016 – Self-Awareness

The purpose of psychotherapy, I am told, is to increase self-awareness – by becoming aware of who you are – you can begin to be proud of your strengths and work on your weaknesses.  And in becoming self-aware you become more accepting of yourself and thus are more self-assured and able to taken on the challenges that you face in life.

I never understood this process before but now I do – and I wanted to tell you that I have found that this process works.  It’s actually quite revolutionary and exciting!!!  Of course, you don’t have to go into psychotherapy to increase your self-awareness – I wise man I know once suggested that for a week I could keep track of those things which consistently crop up, which were difficult for me, and spot the pattern or common denominator in all of these situations. And in doing so I would find out what I needed to work on in life (Of course, I can’t keep a track of anything, so I didn’t do it!)

But by writing this blog I have dramatically increased my self-awareness. I have managed to articulate to myself (and others) that I have difficulty with processing information, with memory, with problem solving and with most cognitive functions.  But in doing so I have realised that none of this is my fault.  It is quite simply out of my control.  So if it takes me a long time to write a blog, to make dinner and I can’t quite ever understand what is going on in my diary, that’s OK. I don’t need to think I am stupid or be angry with myself.

Through this new understanding of myself I have come to learn the extent to which these difficulties are impacting on my life and thus have been very confident in my decision to seek medical help.  And for people with an undiagnosed neurological conditions the process of self-awareness should send them straight to a professional’s door-  a person who realises that they have an attention deficit (ie ADHD), periods of elation and also depression (ie bipolar), or that they have difficulty reading (ie dyslexia) and so on cannot work on their weaknesses by themselves – they need help (we all do from time to time). But of course, everyone can be healed through this process of self-awareness – if a person begins to realise that they are impatient or aggressive or judge too quickly – everyone has something – they can start to work on these negative character traits by trying each day to not be that way (and seek a professional’s help if the character trait is getting in the way of their life in an unacceptable way).

However because I have come to a new realisation about myself I can for the first time in my life be aware of my strengths.  For example I now know that can write and I like doing it.  I am persistent (according to an epilepsy Facebook group discussion this is a common characteristic of people with epilepsy) and I do care about other people. And in becoming aware of my strengths and understanding my weakness, I am more confident about myself, who I am and what I want out of life.

——————-

In other news

I am very excited about my appointment with my specialist neuropsychiatrist next week.  Please g-d next week I will be able to give you some news – even if it is just a ray of light at the end of a very dark tunnel. ‘Fingers crossed’, as they say or to put it another way ‘I am appealing to The Infinite Power that Exists Out There to start to give me the answers that I have been looking for. I still am not seeing any benefits from my naturopathic medicine but on the other hand – it is still worth experimenting with it.  It doesn’t cause any harm, and for some people it really helps.

12. 21st August 2016 – On Tests

For the majority of people the tests that they do at school are the easiest they will ever experience.  Real tests are much harder – they are not something a person agrees to enter, there is no preparation and, seemingly, they are not something that they have a natural aptitude for.

There is an advert for a cancer charity on tv at the moment that says that ‘Cancer is the biggest test that anyone will probably every face’ – I’m not so sure.  Surely the test comes afterwards to the husband who has to raise his children by himself and try to explain to his children why the world is still beautiful.  And what about the test of a daughter of a high-achieving mother who has to find her own niche and come to feel proud of the person she is. Or 21 year old, whose father was an alcoholic and whose mother was not around much, who, aged 24, for the first time in his life gets a job (as a carpenter’s apprentice).  These are the real tests of life – everyone faces them – they don’t have to be dramatic or grand but they are true stories of tests of strength of character, courage and determination.

As I reflect on my life to-date I now see that I have had big challenges that I wasn’t even aware of as I was going through them.  I’ve had chronic depression, feeling suicidal all day long, feelings of worthlessness and I’ve had to really figure out, with the help of others, why it is that I feel that way.  But perhaps the biggest test is in-front of me – to find a resolution to my pain.

So I need to look for role models for those that have achieved great things to enable me to aim high and stay on track. With Rio 2016 coming to a close the Olympians are an obvious choice as role models who take seemingly impossible tests.  However, I wouldn’t choose my Olympian role models because they have won gold (although in contradiction to what I just said one of them did) but because of the challenges that they faced in getting towards the competition. My role models are Michael Phelps and the whole of the IOC Refugee team – a team as the name implies of athletes going through heartache and trauma[1] .  Michael Phelps, the American Olympic gold medallist swimmer, has ADHD, had trouble with inattention and couldn’t sit still in class.  His teacher once told him that he would ‘never be able to focus on anything’[2].  But he did – presumably with a lot of bumps along on the way – but he did it anyway. And everyone in the IOC Refugee team is a winner as far as I am concerned.  Each has their own story of trauma and heartache but yet each has somehow ‘miraculously’ survived to give others a sense of hope. They are role models because of their back story and although their achievement is amazing it is where they have come from which makes them inspirational.

But actually, for a true Test Taker role model I am looking for more than that – I am looking for the way in which they approached their test and for that my models are Abraham (together with Sarah), Ghandi and Mandela.

Even before the stopwatch was invented Abraham undertook ten tests. As an example – he was told by G-d to get up and leave his home and go to a place he had never heard of. Now this isn’t – at first they were asked to go, they thought about it for a bit, then they got used to the idea, and then they did a bit of research and thought about how they would earn a living and then decided that they would take the challenge.  This is one day being asked to leave everything you had ever known and (in a social media/ plane/ media  free world) get up and going because you were asked to.  Like all biblical characters, Abraham was by no means perfect, but upon his enormous tests he didn’t have a nervous breakdown in the middle and say that he was giving up and he was going to go back home and that he just couldn’t cope.  He had faith that things were happening for the best and he didn’t question it.

The only two other people I can think of who are like this are Nelson Mandela and Mahatma Gandhi.  They both had huge tests in their life (maybe not ten, but they were huge nevertheless) , they weren’t perfect, but they managed to achieve their goals with dignity, courage and grace (I would tell you more about their lives – I have read both of their autobiographies, but I can’t remember a thing).

I know that in this horrible test that I am facing I am not approaching it in even a tenth of a fingertips of Avraham’s, Mandela’s or Ghandi’s way.  Or even those Phelps and the refugee IOC team. I may go on about gratitude and miracles but I wobble, fall down, get up, whinge and then fall down again day after day.  But people like Avraham, Sarah, Mandela and Ghandi will always be the people that I, and many others, shall look up to because in their tests of life they persevered and came through stronger and wiser.

In other news: You guessed it – the reason I am withering on again about nothing is because there isn’t much news (isn’t life so often ‘nothing happening, nothing happening, something, nothing happening, nothing happening etc). After the ‘It’s not what who know but who you know’ approach failed because this doctor did not want to see me, I tried the Boris Johnson (our very quirky and quite funny Foreign Minister) approach in the hope that I could see my October doctor sooner.  Boris Johnson said, ‘The dreadful truth is that when people come to see their MP they have run out of better ideas’ so I wrote to my MP and asked him if I could see my October doctor earlier and he said something like  ‘I will do what I can do but this decision is out of my jurisdiction’.  I have however finally got the naturopath’s medication.  It tastes like nail varnish!! But I don’t know about how it impacts upon me as yet.  I’ll just have to try it out and see what happens. Also, just to let you know that I’m not going to be writing for the next two weeks.  Unfortunately my mind travels with me when I travel, but other than that I’m sure I will have a good time.  Hope you have a good break whilst I am away xx

[1] https://www.olympic.org/news/refugee-olympic-team

[2] https://www.understood.org/en/learning-attention-issues/personal-stories/famous-people/celebrity-spotlight-how-michael-phelps-adhd-helped-him-make-olympic-history

5. 7th July 2016 Mental Health Manifesto – part 2

Yesterday I presented the quick cheap ways to make the mental health service better.  Today I present two, more expensive ones.

 

  1. Simplify the mental health system
  2. Train psychiatrists, therapists, social workers and other people involved in mental health services to recognise undiagnosed neurological conditions.

 

  1. Simplify the mental health system

As I explained yesterday under the current system in the NHS in Hertfordshire, and I suspect elsewhere,  a patient with a chronic mental health problem has to see many (in Hertfordshire it can be up to six) mental health professionals before receiving therapy – and patients have to explain their personal story, who they, perhaps, have not explained to anyone else, to each new person.  If you are a happy person this would make your weary.  If you’re a depressed person just dealing with the system could literally send you over the edge.  However, the private system in the UK doesn’t work that and I think the NHS should copy the private system. In my experience if you want to go private this is what happens: – You go to your GP and you tell them that you are depressed.  If s/he thinks that you need more specialist help she will write a referral letter.  You phone up your insurance company and if you have funding in a week’s time you can be sitting in a psychiatrist’s office (obviously if you haven’t got funding your stuffed, but that’s a different matter).  The psychiatrist is the first, and perhaps only, person that will take a detailed account of your history and s/he decides the best course of action to take eg Do you have a particular diagnosis that needs medication eg schizophrenia, bipolar, an anxiety disorder, Do you need therapy?, What sort of therapy?, Is there a therapist who would be a good ‘fit’ to your particular personality and that convenient for you to get to?  How much therapy is required?  Is the situation desperate – should this person go to hospital? If say the psychiatrist prescribed you ten therapy sessions s\he might see you after that period to assess whether you need more therapy/ medication.  It’s just simple – you see one GP, one psychiatrist and one therapist and ideally you should see the same people on an ongoing basis. Of course, it doesn’t mean that people do not suffer, or die.  Conditions are hard to treat, and wrong diagnoses are made (see point two below). But it does mean that the system is easier to understand and there is less chance of people falling through the gaps.

  1. Train mental health professionals to recognise undiagnosed neurological conditions

 

Everyone knows the a story of the boy, who is not doing that well at school, whose behaviour goes off the rails, who has a single mother with a full-time job and two other kids from other relationships.  Although the mother loves her son very much, she has a below average literacy level, and she never does homework with him.  In manhood, this boy can go one of two ways – either to prison or on the bright side – have low paid jobs and on and off anti-depressants for the rest of his life (there is of course a the third possibility – that he find a passion like music, which dramatically increases his self-esteem, and although difficult, he works hard to improve his literacy and ends up having a career in music, a loving family and very much enjoys life).  In either of the first two examples the man goes to see a therapist and at the back of her mind the therapist is asking herself, ‘Why is this man depressed?  What made him this way?  I can see that he had a difficult childhood but I think I am missing something’. The man, of course, has undiagnosed dyslexia. The reason that the therapist is asking herself this question is because she has absolutely no training in recognising dyslexia or for that matter any other neurological condition like ADHD, autistic spectrum disorder (ASD), dyspraxia, and indeed epilepsy.  She is trained primarily to listen and to understand personality traits and how people behave in relationships. And as a mental health professional she is not alone in not being able to recognise these conditions – many psychiatrists, in my experience, are not able to recognise them or think that these conditions occur only in children.  Therefore, although the therapist might be able to treat emotional issues that her patient might have, from other experiences in life, she will never be able to address the underlying cause of her low self-esteem because dyslexia isn’t something she is trained to treat.

Rabbi Tatz argued, (get reference) that depression is caused by a lack of achieving your potential.  That is why I believe I got depressed – I knew I was different from other people – but I didn’t know how and I couldn’t explain it to anyone because I didn’t his is why I believe I got depressed. And I am not alone – people with ADHD, ASD, epilepsy etc are just much more likely to get depressed[1] than other people. But if as I did, they go to a therapist, to treat this illness, they are unable to because it hasn’t been diagnosed and they don’t have the skills required to recognise it – let alone treat it (of course the patient could have of issues that a therapist could help with but there will always be a part of the patient that goes untreated),

Thus I believe that all mental health professionals, including therapists, psychiatrists, social workers and even GPs should be trained to spot these neurological conditions so they can refer patients who they suspect have one onto the appropriate professional and receive the appropriate care.

So that’s it Sharon’s mental health manifesto – part two. It’s expensive – but could be cheap in the long run.

PS Sorry if this blog sounds a bit antsy, but for those of you that don’t know I have been stuck in a big brother room for four days with 27 electrodes on my head being videoed monitored so the docs can see if I am having seizures.  Tomorrow I get out – freedom!

[1] https://www.epilepsy.org.uk/info/depression   https://adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/adult-adhd#   http://www.autism.org.uk/about/health/mental-health.aspx