Dementia

Me & Dad

Writing is cathartic, writing is creative, writing is liberating. Writing is also a vehicle to express one’s most inner thoughts when sometimes vocally it can be challenging to express.

I feel like there ought to be a group I go to and stand up and say “Hello, my name is Maria and I am a carer for someone with dementia”, and then tell my story. This year I figured I would focus on my mental and physical well-being by not taking on a million projects and try and give myself some love, rejuvenation, rest and strength in training.

I’ve been a carer for my dad since 2014 and in short, it’s tough. I’m grateful for many things before you say anything, I have written in my journal, and yes I meditate, do regular breathing, write the things I am grateful for everyday, exercise regularly and spend time with people who lift me up. Nothing can describe or be prescribed or prepare you for the constant pressure, the resentment, the stress, the anxiety, the triggers, the memories, the forgetting, the patience, the impatience, the anger and more.
I love my dad, and that is not in question here but there are a number of people like me who get left behind, who get left holding the weight of responsibility and again I know it is a choice but also an expectation from the institutions that you “are doing incredibly well”. That confirmation suddenly begins to sound very patronising.

I cry a lot, sometimes silently inside, when I walk home from my dad’s house, I cry on my own at home. I am tired and exhausted and my physical health is beginning to be affected by the stress factors of worry and dare I say loss. Am I grieving?
Last weekend was the second time in two weeks where my IBS was triggered by foods/drinks, on Monday I fainted hit my head on the wall and passed out. I awoke on the floor of my tiny toilet, wondering if I would be able to get up or if I had broken a bone. I got up bruised, embarrassed and called my partner for help. Luckily, this isn’t a long term injury or condition but it could have been. I’ve been ignoring the signs to look after me for a while. I’m no martyr, I get on with it.

I’ve spoken to the various services for help, and you get passed from pillar to post because none of them speak to each other. I’ve consistently asked for help from my doctor/from my dad’s doctor, the responses came back;

  • Would you like a sick note for some time off work? (no)
  • How would you feel about giving up your job? (the one thing that I love and keeps me going)
  • Would you like anti-depressants? (I don’t need to numb the pain, I need to talk about it)
  • Could you give up your job to care for you dad full-time? (that is not an option, I have a mortgage and bills)
  • What can I do? I’m not sure those services would listen to me. (call them, write to them)

And then the questions from the various services;

  • Have you tried the START programme (yes, but it’s only a six week programme that helps you understand dementia, offers tools and I do most of them. It doesn’t prepare you for the changes and how to deal with them.)
  • Have you applied for carer’s allowance (it doesn’t apply to me I work full-time)
  • Have you signed up to the activities for carer’s online (are there any activities after 5pm? Weekends?) No
  • Can your dad do activities online? (I work full-time, there’s no internet access) Can you not be there? (no, I work full-time)

I look at the Alzheimer’s Society website, the data from 2018 suggests carers save the NHS 132 billion a year. Wow, I am astounded and yet I feel like there is very little care for me.

There’s been a lot to deal with over the years, housing, money, diabetes, a half brother, extended family, prostate cancer, not being Egyptian (say what?) and now dementia. I often think what did I do in a previous life? Is this my Karma? In the end, it’s just the cards I’ve been dealt. I am lucky I have an understanding partner because I have not been the easiest during this time, I have been solely focussed on my dad, using all my reserves to be there for appointments, clean the house, cook the food and I’m no saint because it has triggered past emotions, memories of growing up in a house where love didn’t exist, there was no “I love you, you’re doing a fantastic job”. There was no support in my dreams, I was constantly belittled, I was blamed for everything, where my strict upbringing was due to my dad’s undisclosed faith, undisclosed truths, where punishment was still acceptable by the hand. 
I’m surprised my partner is still with me, just when I thought I was opening up to me. I’ve become withdrawn, suspicious, irritable, closed down, angry. I need an outlet and it shouldn’t be unleashed on him.

Now, I don’t say these things out of pity or hate, I say them openly because I thought I had let go and dealt with much of my past. Moment to moment has been another obstacle course to prove I can move through, patience, calm, reasoning, but also understanding as an adult, understanding of the quality of life, the ever changing condition, the knowing and accepting. The language and words I use, how much do I have to give or do in order to be there? Have I got other support networks? Let’s not go there. Am I seeing a therapist? Yes.

I’ve forgotten who I am? I’ve become labels in the system; carer, step-mom, half-sister, full-timer, partner. I used to dream about doing things in life instead I feel tired and under valued and couldn’t care less about the future. I use to be happy with my figure instead I am two dress sizes bigger and feel self conscious and fat. I use to wear dresses and do my hair and now it’s tied back, and I live in joggers and t-shirts. I used to be someone…

One of my close friends said to me once “usually the carer goes first”, how that has stayed with me. Friends have privately told me their experiences of dementia with their families and again what stands out is “accepting they are no longer the person you knew”. I cry when I hear this because I still see the same man as my dad, am I living in denial? No, I understand there will be constant changes. But I hurt, I am in pain and part of that pain is losing another parent and part of that pain is my dad losing himself. 

I lost a part of me when mum died, will I lose more of me when dad goes?

A list of things I have tried to do to help dad;

  • A diary with times of appointments
  • organic food freshly cooked, very little sugar in his bought foods
  • games: snakes and ladders, dominoes (he always wins at this) colouring books, word search, connect 4
  • walking, mosque attendance, classes when they resume
  • signs to remind him of things
  • massages (shoulder and neck)/ gentle exercises
  • encourage him to remain independent and mobile
  • call him daily
  • Cards with photos of recent times/birthdays/people

A list to help me;

  • Sleep is so important (try for 8 hrs/ but don’t be hard on yourself if you only get 6 most days)
  • Speak to him less when I am tired/grumpy
  • See what type of day he is having on the telephone
  • exercise/ meditate / take a bath
  • read a book/ write (I write a lot)
  • work / dance / listen to music / do something I love
  • Ask for support until you get it and if you’re not happy complain (include your MP/Counsillors)

Love and strength to you all out there. Every experience is different and personal. You are doing your best and please love who you are through this process. I am still trying to figure out how to love me.

Stepping onto the mat

Fightzone London

Over the last year I’ve seen and heard so many changes in the world, locally, in my friends and within me. They have influenced my thoughts, behaviour but mostly how I see the world via a different lens each time. It’s not often I hear some gems and not the type of cubic zirconia but the rare kind of pink star diamonds. Stepping into my Muay Thai class a few months back was like attending a session with one of my favourite motivational speakers, it was like being in the company of someone you just click with, no egos, no competition just in the moment. It felt eye opening, healing, awakening and I had to say to the coach, “Jose, I just want to record what your saying as it’s inspirational, and I want to wake up and play those words to myself every morning”. It’s just like melted chocolate words of wisdom and no I am not a lovesick teenage over my coach or an obsessed groupie. When you listen closely to the whisper of the universe it resonates on a level that one cannot describe.

Some days I live in hope to find the energy, the words to engage the teenagers I work with at the Ben Kinsella Trust and Head Held High. There are days when I seek that frequency of wisdom that befalls those that we quote from like Rumi or Maya Angelou. I hope that I might inspire daily people that I meet in the various industries I float between (acting, educational, events) but most days I struggle to talk. With over 171,000 words in the dictionary, my mind stumbles to find a sentence. This year I struggle to find the words to motivate me, my mind has an inner dialogue speaking another language, my body is on autopilot and still in bed and occasionally they (body and mind) might be in the same room at the same time, like in my training class.

I like focus, because at this point, I need another coffee or I’m really hungry.

Could I tell you what coach Jose said that day in between breaking down the drills for the hour. No. What I do know is how it made me feel. I felt a surge of courage, I felt that anything in that moment was possible. My internal dialogue was “Maria – you’ve got the drills nailed, coordination is on point and you’re having a strong day”. 

Jose talked about imagining oneself being in that fight, in that ring, it’s just you and your opponent. The words that day were an awakening and I looked around wondering if anyone else was drinking in this life affirming liquid or was it just me, had I drunk the cool aid? What can I say when the universe communicates on your vibe, you have to listen to its frequency.

It dawned on me this was a metaphor about life. I often think that my opponent in the ring is ME, the me that deals with the internal struggles; the self-belief vs self-doubt. That nagging inner voice judging, making comparisons and telling me I’m not good enough. My ego walks the fine line of thinking that was a good class and telling myself ” I’ve learned a lot in this last year” to “fuck off you still have so much to learn, and maybe you will never be as good as you hope to be”.
When ever the coaches, Jose or Arthur, come round to verbally encourage everyone, something inside me seizes up, tenses, my coordination fails and positive comments throw me. I find it difficult to digest compliments, I find it even harder when my Coach/Teacher is encouraging, says a lot about my upbringing. One of the things Jose says is “you make a mistake, you learn, let it go and move on”. I so wish, I lived by this mantra growing up. I wish I could live and breathe it now. 

The truth is at the end of that class I realise I step onto the mat as my 7 year old scared self, frightened of this new environment, keeping in my lane, head down. No make-up, no glamour, just me. Go in and get out. I beat myself up for the mistakes as though I should be perfect first time. How did I become that insecure, if I think about too much I cry. Still time to grow. The adult me knows that’s not me, I try something new, I’m a people person through and through. I could not have read ‘Tribe’ or listened to my friend Dan’s podcast and learn nothing about “belonging”. Not to say we will always belong to one tribe or stay in it forever but when you find something that feels right, you stay for as long as it serves you in what you need to learn about yourself. 

When I step off the mat, I step back into my adult self having added more to my experience. I’ve learned my opponent can be pretty fierce and powerful, that I need to protect/guard myself in certain places. The irony is I think I have more barbed wire up than I realise and maybe this metaphor is about boundaries and putting them in place for people who drain and take energy. Maybe I also need to loosen and lighten up.

What I have learned about me on that mat is that I say “sorry” and fuck” a lot! 

What my hope to do one day is to step onto the mat as my adult self with self assurance, all the knowledge, experience, skill that life has taught me and look at how far I’ve come. To tell that 7 year old self who might now be 12 years old that she is brave, courageous and is always trying out new things on her own. That self doubt will always be there and it’s up to you if you allow it to get the better of you or not, it is a choice. That whatever zone you’ve stepped into today, it’s a journey that allows you to evolve and grow. There will be many zones you will walk through in life, Maria but there will only be one Fightzone.

2021-Tired and worn out

When I was in Thailand at the end of 2019, I thought I was recharging my batteries for a new year ahead. It had been a stressful year combating the changes of an elderly parent with dementia, and battling with various services to listen and help. I had a vision of 2020 being the year of travel to another unknown, an exploration of new terrains where I could feel the sun on my face, learn about a new culture and unlock a different part of me. But 2020 into 2021 has been just as stressful if not more due to Coronavirus. I’m not complaining about the pandemic and the ways in which it has changed the way we live possibly forever. I’m talking about the side effects, the curve ball, full on in your face, ripple, emotional and physical effects. This is what is going to live with us long after some “normality” is resumed.

I am so f**king tired. There are days when I cannot think, I don’t want to speak, I cannot breathe. My partner and I have been talking about “joy” and “light” recently and to be honest, it’s hard to see any of those things when you don’t have the energy to find your way out or lift yourself up. If I’m honest, I am not really sure how I have shown up every day to work, to be there for loved ones or my partner; it feels like one endless road of sheer relentless shit.

All the effin positivity, motivation, 21 days of abundance, breathing and training I am doing is not helping my well-being. All the self talks, tools, coping mechanisms have fallen by the way side and I don’t know how to get back on track. I don’t want to do another zoom workshop. Now, I sound resentful and gawd dammit I am, I just want to be able to book myself into a hotel by the sea, feel the sand beneath my feet, the sun on my face. I can’t even do that. It’s so grey here. London, I love you but I need more colour in my life other than Netflix.

My past haunts me, the “what ifs and the maybes”. Was it so good? Did I have so many fun moments that only now I can see how grateful I should have been or am I living in a fantasy of unrealistic stories of the past. We all view moments differently, and each could tell a different version of the same moment. Maybe my shade of haziness is lined with drunken forgetfulness of the reality?
Does this mean I am not happy with the present? Does this mean I am doubtful of the future? Where is it all going, can any of us be certain anymore?

As a teenager I had dreams of moving to the US, of wanting to be an actress full-time with an apartment in New York and a flat in London. I would travel widely and my success would afford me my own business and financial freedom. There would be direction, security, maybe children, marriage and certainty or is that last word meant to be replaced by security? I don’t know…instead my life is the complete opposite. I’m not complaining but reflecting. I’m not naive but still adjusting. I’m not dissatisfied because I made choices every step of the way. So, what am I saying? I don’t know anymore, I don’t know what the future holds and that is unsettling when nothing seems certain in the world outside. Am I just afraid? Yes. Am I realising that my OCD is kicking in and I cannot control the future. Yes. Am I bored due to lockdown? Maybe. Am I the only one feeling this way? I don’t know.

What if this is all there is? What if this is as good as it gets?

My only aim for this year so far is pressing the pause button to declutter, recharge and give myself the space. To think. To be. To heal.

Comfort zone or Fightzone?

Comfort zone” as “where our uncertainty, scarcity, and vulnerability are minimized-where we believe we will have access to enough love, food, talent, time, admiration”
Brene Brown

Sometimes, I really love where I am in my life and what I mean by this is I have a job, I have choices and I can make these choices based on my age and experience in life. There are days when I look at kids whose parents encourage them into an activity (notice how I said encourage and not force), how I envy this choice as a child to be able to do something that becomes a passion. I am certain this is how you find “your thing or one of many things”…I’m so eloquent with words. I also believe this is how one finds different zones “comfortable” equates to safe, secure and “I like it here, I might stay for a while”. We surround ourselves with like-minded people, a support network of sorts, close but not too close, then there’s the odd challenge but nothing overbearing and mostly tolerable.

Ahem.

Life has a way of throwing one’s comfort zones out with those challenging people, situations and sometimes one may go out and seek the challenge. Find the discomfort in order to know what it is they like about the “comfort zone” so much. I digress. I believe we live this life and start a new one every time we face trauma, death, birth anything that is life changing, we become a new version of our old selves. It sounds obvious, I know but I couldn’t see it before 2009, and it’s not necessarily that I see it clearer now (because I still wear glasses and somewhere I developed a SOH…shh don’ tell anyone) but the best way I can describe it, is reading or hearing something you already know but at that moment you hear/read it, it has an impact, it changes your perspective, how you feel and it can change your life.

Life defining moments feel like an ageing process in a short space of time but equally the fuzziness is you don’t know how you got here. Even though I remember everything preceding 2009, well most things, some of my memories I let go of. Maybe they didn’t serve me, maybe they held me back and were toxic and maybe it just didn’t matter anymore. I guess when a parent dies, many things that mattered previously don’t matter anymore. So, you ask yourself what matters, you look at yourself and something apart from death slaps you in the face, and forces you to ask yourself “Who the f**k are you?” in the broadest sense and say goodbye to your comfort zone.

One of things I said to myself is “I want to live life to the full”, I haven’t been living. I was a fool, as not knowing what that really meant, I interpreted it as “let’s paarrrrty”. Drink upon drink, late nights, excess spending, blah blah blah. Did it serve me? No. But it became my comfort zone, my numbing zone. I realised after bereavement/regular counselling, working eight jobs over eights months on 3-4 hours sleep, breaking my ankle that took me out of acting for two years, that this was not what I meant when I said “I want to live life to the full”.

Another trauma, another period of reflection and another new me.

Jump to 2017 and I never thought that writing a short film about a female boxer would take me to Islington Boxing Club for research, a reading of my script and a love of boxing grew. However, I am the first to admit that I get restless quickly, I like change and realised I like trying new things (Oh this is the new me) I know, that sounds totally facetious but it’s true! I haven’t made the film yet, partly because I wanted to be in it…hahaha I know, me, as a boxer first I would have to obtain the figure of a boxer and secondly I would need to believe that I could do it.

A slight aside, I was listening to two BAFTA talks, one with Noel Clarke talking about ‘Bulletproof’ and the other was the BBC Writers Room both saying that you have to push through with your vision, I kind of still am. Pushing through with writing but sometimes you have to park stuff in order to move forward.

Back on track to 2018, I always wanted to travel on my own and long story short I was seeking sun, workout and rejuvenation. I decided to go to Thailand after seeing and asking a few friends about the places they had trained in. I wasn’t keen on doing just a yoga retreat as I had done that already and loved the two free surfing sessions thrown in. Again, was I coming out of my “comfort zone” or was I trying to find it? I was learning to swim that year and somehow I felt brave to be in the sea in a way I would never dream of. I liked this new me, it felt carefree, adventurous and spontaneous.

I entered Tiger Muay Thai, Phuket in December 2018 with no expectations bar that I was going to be surrounded mainly by men but I was pleasantly surprised to find women there too. I remember a friend saying to me “only you would go on holiday where you can go to the gym too”. Yes, I laughed but what did this really mean? Was I about to embark on a career in MMA. Ha, hell no. I hate violence, I work with people and teenagers, I’ve worked with kids. I am a nurturer, a carer, I encourage so why these violent sports. Well, I had never explored that element before or that side of me. There has to be something in me that desires that interaction, there must be an excitement that thrill, right, otherwise why would I do it. I don’t seek a career in it, I aim to get good at it, so is this my thing?

Fast forward to November 2019 and now a month in Thailand and training in Muay Thai and Krabi Krabong. That was it, I knew when I came home I would be seeking a class in either to continue. In January I entered the world of Fightzone knowing I would be looking around to discover which fight gym I would settle in. Normally, I’m confident/comfortable in myself since I started weight-lifting but coming into a fight gym is on another level. Oh, there she is that new me again, another life.

I never thought for one moment that my journey to explore the market would end. Jose, the Coach was supportive. I had a partner called Jenny, experienced and patient, and I was elfin bricking it. I said/say “sorry” a lot, I swear and I tend to beat myself up when I don’t get the simplest of steps. I didn’t realise the child in me who never got it right still exists. I hoped she had grown into a confident, self believing, easy on herself woman. Sigh. Nope, still need to remind myself every day and in every way, Marie Forleo’s quote “progress not perfection”.
12 months in, I still love it, I’m still learning and I even bought gum shields to gently spar. “Not the face, I an actress, don’t you know”. It’s kept me going during 2020, online and in-person. I really wish I had found the sport as a child and maybe the child in me may have grown up differently.

I’d rather be in Fightzone than my comfort zone.

The Soul Journey

Today marks the end of 100 days Sober challenge and I ask myself what have I learned, observed, has there been some life changing moment or knowledge and wisdom that I can share with you?

Every experience is different and the journey personal. I thought I might blog or vlog regularly about not drinking but actually when it came down to it, I asked myself why I needed to stop? I chose to join a friend in her journey and my partner joined me in solidarity. Thank you to both.
Choice is the key word here. I forget sometimes that I have a choice in everything I do and how I feel, it’s not down to to the external world. That can have an impact but how I respond to it is what matters.

I enjoy a great glass of wine or prosecco and more recently have found a delicious gin, on an evening this has been my release, my “go to” when life has got stressful or an adjunctive to winding down on an evening. It was my dose of numbing the pain, separating the emotional burden or heaviness of the moment or an excuse to forget the past.

I didn’t have any expectations going into this, friends said I would feel good in myself, others sent love and support. Thank you all. I really never thought deeply what it would mean. Did I miss drinking? Occasionally. Did I crave other things? Savoury and sweet, but always had a sweet tooth. Do I feel better within myself? Definitely!

What are the positives?
The most eye opening for me is how much clarity my mind feels and how my learning and absorbing information has altered. I haven’t felt this level of distinction for a while. Learning and listening has been freeing rather than weight bearing.

Emotionally, I feel everything, how painful situations can be but it’s not unbearable. Some situations are impactful and my Dad’s dementia and changing behaviour is something that affects my day to day. Caring for him on this level is difficult, and even though I am responsible for my feelings, there is always going to be a trigger. Navigating through this situation is a day at a time and there is no easy answer.
My emotional outlet has been greater, I cry, I let it pour out and I believe it’s because I’ve previously denied myself to feel, I desensitised myself to hurt or I didn’t feel comfortable in releasing as it made others uncomfortable. I realised this denies who I am and I don’t want to ignore or suppress who I am because who I am, matters and how I feel is valid.

My training is so much better, my confidence in being able to spar in a Muay Thai session (as a beginner) is something I never thought I would see myself do. My coordination is better, my body is definitely healthier and I am listening to what it’s asking of me daily; food, drink and rest.

I’m also less irritable, less spiky and and willing to see life on a wider scale rather than having my “all knowing ego” talking. Ha!

What are the negatives?
My sleep has been poor and that is down to worry and stress.

What next?
Back to drinking? Well, the man made Mead. Lol. Alcohol from spring water and honey fermenting in natural yeast. I look forward to a sip more than a gulp.

“They” say you can form a new habit in 30 days, you can if there’s a habit you’re ready to let go of to replace with a new one.

X-Cues

Fire up and fuel my anger with words

unashamed, actions of no thoughts

excuses unabashedly a slap of audacity

Water not the words of devaluation

with tired words of so called evaluation

isolate me with time not mine to be had

scar the memory of will so unwilled

lash each syllable at my heart so full of honest love

innocent love truthful love. Use, useful or just used.

you ponder not the pain you cause

the hurt you inflict, inconsiderate selfish…

give back the time that should be mine

to grow, to fill with happy times, memories of new

You anger me to sleeplessness

incite physical oppression to aggression

turn infliction to contradiction confusion all consuming

words and actions generate usefulness

when needed.

Go forth, go to, just go!

Return when time has healed itself

return when care has entered your single-minded thoughts

return when mental astuteness aligns

itself with a higher self and not a

tired unrepenting excused ego self – unknowing yet knowing

contradiction lies deep within so-called wisdom.

A poem from 2016 I never published.

Hello Mum,

Hi Mum,

It’s been over ten years since I physically hugged you, spoke to you and saw you. I can still smell your scent when I smell perfumes, Poison or Givenchy. Even the smell of Frankincense reminds me of the essential oils you use to use in our old house.
I see your face, expressions in people that I meet, reminding me that you are still here. I hear the songs you loved and know that you are near.
I still hear your laughter in my head, I still see the red lipstick you wear, the bright colours of dresses and shirts you would wear. Jeans were never part of your wardrobe and I always admired that the colours you wore suited you every time.
I loved that you would ask friends to make your clothes for you, they were unique like you, as were your headscarves. I remember the gold necklaces, earrings, jewellery you wore, you were never scared to wear them. You were fearless in so many ways and adventurous. You will never know how much of me is you.
I remember your dreams and stories were filled with worry and caution. I wish I had known more about your life in Mauritius and what had really brought you here, what were you leaving behind and how easy it was to let go.
Like many a better life for your children, a new dawn and hope for the future, a home to call yours and a family that were solid. I wish I could tell you how I live my life now, how I hope you would be proud of me, seeing me happy and with a very different life you were part of. I struggle Mum, there are so many things I didn’t expect, so many revelations and expectations. I struggle with not hearing your support and compliments, negativity is a bitter pill to digest, there’s so many side effects.

I remember the day after you died, I heard you call my name so loudly as a whisper in my ear so closely that I had to look around. It was the name you called me by, not my given name. And I remember feeling my heart beat so fast like I had had an electric shock.
I know you are here with me every day and when I really need you, I see you in my dreams. The last dream was not too long ago, and I remember us catching up about what has been happening in the world, us laughing together, and when it came to saying goodbye. We hugged several times before we said goodbye. I could smell your scent of Frankincense, feel your cool, soft cheek next to mine and feel the tears rolling down my face.

Until we next meet.

Post apocalyptic times…

Currently we are living through a pandemic, Black Lives Matter has moved prominently to the forefront of our times, global politics has been a daily conversation as much as our work talk and now we are living through a “new normal”.
When lockdown 2020 happened on 23 March, I was still floating from my month’s holiday in Thailand and dreaming of my next holiday, but everything stopped. Everything apart from my day job which got busier, anyone considered a “key worker” their life continued, adapted, and a sprinkle of added pressure and expectation.

Technology was at the top of the list, how do we expand on it, transfer communication on it and we had a Zoom boom. I had heard of Zoom before it exploded into what it is has become today 30 more million users and added online security. I have suddenly become a whizz at online meetings, muting people, trouble shooting and a video editor in the space of three months.

I started to envy those on furlough as having some paid time off sounds great, just think of all the things I could catch up on and all the things I could do. Realistically those “things” were domestic, cleaning, renovating and letter writing. However, in a way I am glad to have been working, there’s something about structure that helps me plan and oversee my days and weeks.

I’ve heard many people say it will be a time to “reflect, slow down and enjoy time with loved ones”. Yes and no. It has been an awful time of disruption for my Dad who has dementia, his routine has been completely wiped, his restriction of freedom has come at a cost, my relationship with him has been wrought with friction. He doesn’t understand that I’m not the one making the decisions on his life but I am carrying them out and therefore I get the brunt of the disgruntled anger. I am deciphering if he’s having a bad day, or he just hasn’t eaten/drank enough or if he’s genuinely having a bad day. 
I am spent, my energy is low, my mind and body are tired from working, running over to make sure he’s okay, calling to make sure he’s eating and drinking and managing life as a step-mum, a partner and all these other labels I/society put on me. I have had more internal grumbles than usual, and my outlets which has been going to the gym, Fightzone or Islington Boxing Club are closed. Pubs will open on the 4th July but gyms are closed. Sigh. This government makes me fucking angry. Is healthcare a priority or is tax on alcohol a priority?

This has also been a time of reflection in many ways, I’ll start with ’21 Days of Abundance’ by Deepak Chopra. I was invited to commit to this and I really loved the journey of self-help. It’s not an easy journey as there are aspects of my Mum I was encouraged to answer and think about the people who really inspire and lift me up; and the ultimate question “what are you doing with your life”, not in those words but I know this is why I took the time and it’s always good to reassess where when one is at during times of difficulty or ease.

I have loads of ideas I would love to execute, lots of knowledge I would love to share and there’s sometimes something inside that stops me. Procrastination, scared, tiredness, excuses that I can always start tomorrow or am I waiting for the right moment? There is no right moment, there is no time like the present and I have to believe in myself that I can do it. But I am tired and there’s the excuse. So, how do I change this? I listened to Brene Brown talk recently where she says “sobriety is your superpower”. Do I drink that much, no but I do drink, could I plan my lifestyle better as much as I plan my work or extra hobbies, yes!

What’s really important to me? When my Mum died over ten years now, I asked myself this question. The answer was live life to the full. I made mistakes and I didn’t really live life to the full. However, Deepak talks about the “space between thoughts”. There is a voice that speaks to me and to us all, it’s that intuitive one that tells us “yes, go for it” or “no, don’t do it”. It tells us many things but we either silence or ignore it. I am getting better at listening to it and much of the time to hear it, I have to “let go”.

Now “letting go” is a difficult concept for me as I am a hoarder and a hanger on. This comes from my family, I can acknowledge that. Emotions, scenarios, regrets that are passed onto you like it’s a burden for you to live with all of your life. I have to remind myself daily that I don’t need to carry it with me and I am reminded of it when i hear of other peoples childhoods. I do not possess the power to change my past, I wasn’t given the opportunities of some and it was an oppressive, restrictive childhood. But I do possess the power to forgive and move on and change the way I feel about it.

It has been so hard in “letting go” all of the childhood feelings of the past in the last five years, my Dad’s ongoing health issues year upon year, finding out I had a half-brother, finally meeting my Dad’s family members. I feel like I’ve been the guilt and shame he has hidden for so many years yet the expectation that has fallen upon me to be responsible for him and his health has no thanks. Dementia brings out the ugly side of my Dad’s personality and all the trappings I felt as a child I am choked with as an adult. Has my mental health been affected, of course, I have been seeing various counsellors. Has my relationship been affected, undoubtedly and my partner is still here for now. Has my life stopped. Yes. I am living and breathing for my Dad. Have I lost who I am? Yes.

The tears, the anger, the guilt, the shame, the resentments have all reared their ugly heads in me and it is hard to quiet the voices of the past. The voices I thought I had dealt with. This is what post apocalyptic times are like.

A Writer’s lover…

Listening to Neil Gaiman on Tim Ferriss’s podcast “The Interview I’ve waited for…” was quite a joy. My favourite over used adjective word came to mind, it was “inspiring” but no that was not the word to use here. There was a sanguinity to his tone of voice, something decadent about the way he spoke, his reverence for notebooks and fountain pens; and esteemed love and sadness for his friend, the late Sir Terry Pratchett.

To be honest I didn’t know what to expect from this interview and for the first fifteen minutes I was thinking, really…we’re going to listen to Neil Gaiman talk about the materials he writes on and pens he writes with (long). But as the adoration of using these tools to craft one’s art went on I realised that I share the same love for notebooks and passion for writing. I do enjoy typing but there’s nothing like a pen in your hand and writing on paper, gliding the words on the page, the continuity of thoughts.
I worried that my love of stationary was a fetish and I had an unhealthy obsession with pens but what I have discovered is that they are my lovers, and I am just a lover who requires the tools to play with. I know what you’re thinking but I am talking about the  form and process of writing.
Journalling, story-telling, screenplays, poetry – I love words. My vocabulary may not be the landscape of the seven wonders of the world or overwhelm you with colours and shades of the Sistine chapel but I’m sure there is a place for me as there is for you. I guess I feel “normal” and less “abnormal” to be a lover of writing, is it a form that is dying out?

When my partner gave me ‘Neverwhere’ for my birthday, I remember reading a few pages, found myself bored and put it down. It didn’t interest me. I came back to it a year later and couldn’t stop reading, what had changed in a year? I’m not sure, sometimes I’m not ready to read certain books which is why I buy them and shelve them for years. I might read them one day, my aim is to read the ones that I have on the shelf and in storage (gulp).

I love London and reading a book that weaves inside and outside of London streets that I know captured me, I could relate. Whilst working for an old Livery Hall that dates back to the 15th Century, even more stories were animated in my head.
(SPOILER ALERT) I remember leaving the bus just as I finished ‘Neverwhere’ and looked up. I was astonished as there in front of me, I caught a glimpse of ‘The Marquis de Carabas’. I was grappling for my mobile phone lost in my bag as the bus stopped at St Pauls to take a photo, and I thought there it is, London Below has come up to visit London Above. I was so excited I tweeted @Neilhimself

 

I became even more of a believer in fantasy, wonder and possibility. I thought of my “inner child”  not the psychologically damaged one but the “innocence of youth”. It had taken me back to Edgar Allen Poe, Hans Christian Anderson and the Brothers Grimm. Dark stories that I read in my childhood, stories of truth with characters not so beautiful and perfect but those that questioned thyself and others. I grew up with horror and  thriller influences (poor me). I look forward to ‘Good Omens’.

I loved Neil Gaiman’s honesty in what friendship was for him and the loss of a loved one. The beautiful memories of past conversations, accents, admiration, devotion, hearty laughter and an emptiness of being when they are gone. Death reminds us of moments we’d almost forgotten, a period when we experienced happier times. A soulmate of another kind.

Have a listen.

What is my “legacy”?

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I used to believe that legacies were about children and inheritance of heirlooms and antique furniture. I used to believe legacies were for the rich and famous like Richard Branson or Mark Zuckerberg. I used to believe a lot of things that I don’t anymore, am I jaded, more experienced, older, maturer? I scoff whilst writing this in a cynical inwardly way. Like only I understand the joke, only my inner voice understands what that means; or inner child, as the psychologists or mindfulness community might say.

I travelled abroad recently and had this notion to bring my books, my journals and downloaded a few podcasts to really keep my mind active and engaged intellectually. (I scoff again) Did I read any of them, no. I stayed present to the moment, had pockets of beautiful conversations with some inspiring individuals and exercised hard, well hard for me. Whilst away I believed I would be discovering all these different paths of who I was (existential questioning we all do), what was I to learn on this solo travel. So much of what I learned was seeping its way through upon my return home and not abroad at all. I realised many things about myself, I don’t like the cold, I acclimatise really quickly to the exotic weather (yes, I have many continents in my blood line), I love travelling and it was freeing to do it alone. #yesmyboyfriendapproved and #noididntneedhisapproval
What I realised is that I had taken on the weight and woes of my family and I was discovering who I was in the process. A journey that will never end until my last breath.

So, back to legacies, I started working with the Ben Kinsella Trust and Head Held High just before Christmas on a programme called ‘The Best You’.
Sometimes, I believe, in life we have these serendipitous moments which we either listen to or ignore; what I call the ‘universal alignments’. I’ve been turning the volume low for the last few years without trusting the universe to let things happen. (Now, I know that might sound a bit whacko but most people who know me, knows that I am spiritual). When others come first before your needs, it takes a life changing experience to allow you the time to re-assess your needs are a priority and that is not selfish!

So, ‘The Best You’ programme is motivational for teenagers to get them thinking about their futures, how they can make different choices to protect themselves and to discuss the prevalent rise of knife crime. I worked with an amazing woman, Tash, who has been doing this work for six years and it really shows. There are so many moments in my life where I feel so damn lucky to meet people who not only inspire me right to my core but also I feel so privilege to see how committed, passionate and caring they are in their work, and Tash is one of them.
There’s no time for ego, this isn’t about us, this is about them! I have cried more over this programme and felt so deeply from my soul, than I ever have in crying out of sadness or anger.

The programme started in January, all the teenagers in the group knew people who had  been affected by knife crime or they themselves had been affected by knife crime. The programme had seven teenagers take part, lasted for six weeks, took place in their school with a visit to the Ben Kinsella exhibition.

Was I affected? Yes, every week I went into the classroom, and then onto my full-time job. On my second week, I sent a text to Tash to say how much respect and admiration I had for her knowing how long she had done this work for. I then asked my work colleague if I could have a hug. I cried on my colleague’s shoulder and felt two things “hope” and “progress”. I could see the cogs starting to turn, the pennies dropping, the trickle of change, you could feel the shift in the room when someone had been honest and vulnerable. Every week everyone came, they didn’t have to participate, they didn’t have to attend, the class wasn’t compulsory but every week we saw the same faces and kept reminding them of the reasons we were there. We were there for them, to open their eyes to who they could be, accepting responsibility for their choices, having the opportunities to change their responses to situations.
I felt very much this was a learning experience for me too, what was I doing to be the best person in my life, for my partner, for my family and friends; applying those things that I was saying was tough. I learned things from my friends which questioned who I was in the friendship and staying open and receptive is one of the hardest parts of being human; to not judge and to not be offended.

Today, in our last session together, I was sad that I was not going to be there next week. One of the lads said “why was the programme not going on for longer?” and I felt Tash and I had done our job in that they could see the benefit of this type of work. I felt like all those podcasts I had listened to where they ask the interviewee “what advice would you give your younger self”, I felt like this was my opportunity, I had had six weeks to impart my wisdom, life experience and emotional maturity but I couldn’t find the words and I’m more “story-teller” than “short and concise” type of person. How can you know what to say that relates to the work you are doing, how can you say all the things you wish you could say without the abbreviations and use all the expletives the schools deny you of. How can we make a change in the short one and half hour class that we get?

When you work with someone who gives you the space to lead part of the session and lets you run with a personal experience, all I can say is today was a heart opener. I shared something that even some of my close friends don’t even know about but laying one’s heart out there is not weak, it’s strength in being able to be vulnerable and open. Brene Brown’s Ted Talk covers this on ‘The Power of Vulnerability’. I left the space like I always have with two words in my mind and heart, ‘Hope’ and ‘Progress’.

There’s no selfies or “let’s keep in touch” but there were “thank yous” and a hug. Priceless! I’d been thinking all week what my parting words would be and this was them “I want to meet you in the street in 4-5 years time, shake your hand and hear you tell me what you have been doing. I don’t want to see you on the newspaper because you’ve become a victim”.  I am sad not to be going in next week and shaking each one of their hands and saying hello. I am sad that six weeks doesn’t feel like enough time but I feel lucky to have had the opportunity to work with them, to be inspired by them and to set goals for myself because of them.

So, I come back to legacies, is this my legacy or theirs? I think it’s our legacies that we create and hope we pass on. I have hope in the future of the next generation.

Thank you Ben Kinsella Trust, thank you to Head Held High and to Patrice.