Death

Post Grief

/ Maria Thomas / Leave a comment
Maria - daughter, brown woman with blonde highlights in hair leaning her head on dad's right shoulder. Dad is a brown man in his 80s with a cream shirt on with brown collars.

Autumn has truly arrived with nature transitioning from light to dark, the warm breath of the breeze on our skins, the beautiful red and yellow leaves strewn on the pavements reminding me of the cycle of decay and death. I am reminded of this time last year and not knowing how long I would have with dad. I remember bringing a red leaf and giving it to him, an internal sign, a moment of how I would not see him through another winter.
This pre-winter grief has lasted for years in different stages, and over seasons and cycles. My heart is heavy with loss and I know I am not the only person who is grieving and has lost this year. So many friends have lost a loved one, so many have reached out to empathise, to remember and for those who are going through it anew. I am lost for words. They are recycled and I wish I could offer new ones.
I am still going through the following and I know its because, I could not process these at the time.

Guilt

No one tells you that once all the services that were in place for your dad stops, there is no service that continues for you bar one, therapy which I pay for. Whom do you turn to when society and its structures are set up for you to deal with grief in two weeks when I have been dealing with it for eight years.
I rang Admiral Nurses after dad died to say thank you, and had a lovely conversation on the phone to a nurse but I felt guilty that I was taking up someone else’s space.
Guilt never ends, it seeps through at different moments as the memories come and go over time. All the arguments I ever had, pre and post knowing the diagnosis of dementia. All the times I never stayed with dad, as I worked long hours, or made up for working late due to being in hospital, the guilt of not working enough, of not being there for others, of not being there for myself or my husband. Guilt of what I should have done, or should have said in defence, of not being strong enough or standing up for myself enough.
Guilt is an ugly voice, it’s the internal voice of shame, it’s sharp edges prods and pokes you into self-loathing and insecurity. Guilt stops you from sleeping at night, it is a constant replay over moments, and scenarios, and ‘what ifs’. Where do I feel it, in my stomach, chocking my throat, destabilising my senses and critically analysing my words. I am shockingly drained and tired from the constant voices of guilt holding my ever faithful friend – Shame.

Shame

The voice of others or myself – although this is unique to everyone, I am sure. Shame talks to you about duty, dutiful daughter, you are the carer, what you should do because you are his and now it’s your time to give back. Shame comes from the conversations, both from people who know you and who don’t know you, from family, friends and from services. No one really believes they are shaming you because shame shows up as advice, as words of consolation and experience. I put shame in a box, i compartmentalised it until I was ready to face it, and yes that small ‘i’ is because i feel small.
Where do I feel shame in my body? In my shoulders, neck, lower back. It’s the weight I carry, not only of myself but of others and their expectations of me, of what is expected as a daughter as a carer. I never really understood what care meant in relation to gender and I now look back and realise how society’s expectations on me drained me of me.
Shame made me angry, it fires up the rage in me, it made me tough and resilient, distant, cold, numb when I shouldn’t, couldn’t, want to be those parts of me that rob me of my humanity, my joy. It wasn’t until a ‘dementia navigator’ asked me how I was and vulnerability showed itself. I cried, no I sobbed. No one had asked me how i was doing. I hadn’t asked me how i was doing in a long time, because gradually there was no i. Shame and guilt make you feel selfish for even thinking about you. It uncovers vulnerability.
My body has never been the same these last eight years, it’s older, slower, bigger, bulgier and I look different. My body, my face has reflected the tiredness, the weight, the heaviness of shame. Shame has shaped, manipulated, whispered dark thoughts in my soul, which has echoed through my body. If I could give my therapist an award, I would. The space for my shame to sit in, is there, contemplative and contained.

Vulnerability

Vulnerability has shaken my core but I had to control being vulnerable outside, to the world of healthcare professionals, whilst internally or at home I was and still am a vulnerable mess. I had wrapped vulnerability in cast iron, seriousness, arming myself with knowledge and questions, and protecting my dad with a fierceness that I hadn’t with my mum. How could I be vulnerable in any situation with social services, GPs, oncologists, hospitals, NHS services – all of the appointments and conversations were about knowing about dad’s health. I had to be strong, be in control, look the part of the dutiful daughter, not the angry, brown woman raging inside at losing my dad. Having to deal with all of the changes, the subtle ones and the slap you in the face obvious ones. I had to stay calm and bite my tongue at every turn when I was faced with ego, condescending tones, when services were not given freely to me, when I was made to ask and ask again. When I had to tell a number of different doctors, nurses what the situation was over and over, pleading for care to be in place, a service to be given. Vulnerability has made me sensitive. Sensitive to energy around me, peoples energy/vibe. Where do I feel it in my body, in my gut. Vulnerability has stoked the fire in me, anger and rage.

Rage and pain

This last year I have raged inside, my patience is a thin veil of ‘fuck off and leave me alone’ – alone is how I feel. Is it a feeling? Yes, but its more than that, it’s physical. It’s – I want to punch and kick a bag until I drop, it’s rain on my face along with my tears, it’s being on the bus and passing the care home with tears streaming down my face. It’s sitting alone in my living room and looking at the images of my dad and mum and knowing I can no longer call them or see them or go round to theirs for dinner. Rage is hot, cold, light, dark, being alone or surrounded by people. It is everything all at once. It is the eight months of trying to get home care from social services, it’s the carers who didn’t think outside the box, it’s the doctors who made the decision to prescribe an anti-psychotic instead of calling me to be with dad, it’s the matron who won’t listen, who dismisses and you are silenced and waves you away. It’s the doctors who won’t take your side when they see injustice and let you stand alone, it’s the doctor who tells you there’s nothing more they can do and leaves you with no hope. It’s the doctor who has made up their mind about what treatment will start without consultation and questions your research. It’s the services that ask why can’t you bring your dad to this activity when they already know you work full-time and offer no other solutions. It’s the people around who bring sweet food knowing his mood will be accelerated but they don’t have to deal with the aftermath of shouting, throwing food around and horrible words. It’s the punchbag you have had to be and accept because in not doing so may have been detrimental to dad. It is the smile on my face, the words when I write, the vows he didn’t hear, the wedding he didn’t see. I feel rage and hurt all at once and sits in the centre of my chest, heavy and raw every day.
It is the vitriol I feel toward me and it’s hard to talk about it, it’s hard to define it sometimes, it’s hard not to quietly walk away from everything and everyone. Even the closest do not understand because trauma is happening everywhere, to close to home, how much capacity do we have for ourselves and each other? Very little, if any at all… and on some days when it’s really quiet, I can hear it and I sit with it, hope.

Hope


Hope offers me a new life, a new vision, a different energy. It offers me a gratitude for a new life and choices that are mine to make me happy. Hope for the kindness to myself. Can I see the kindness of hope, the small steps that allow me to lift myself out of grief? Can the emptiness be filled? How can I ever be happy knowing that my parents are no longer there to see and share in my joy, in my journey of life. Was I that naive to think that they would live forever? No, but I hoped they would live to see more. I miss holding my dad’s hand and it is so raw to think today will be one year since we said goodbye. Hope is my siblings, my niece and the next generation. Is hope love? In many ways, yes and in some ways no. I hope that I will love me full and unconditionally and that might heal the memories of the past. Hope is my guide today and always.

Tides of time – heal me

Seek not my body in the past moments of joy and celebrations
Seek my soul’s divine path of forgiveness and knowing
Knowledge has held my hand and humanity has been key to its centre
Feel the words of ownership whip itself on my skin, sowing the seeds
of trauma

Patient centred care – what does that mean? Listening, giving space
To a voice otherwise marginalised, labelled, troublemaker, difficult
Advocacy for men, but what about support for women?
Regimented rules dictate a system so old, so cold sometimes, so distant
Distrusting state and healthcare that cares not for some and only others

Others that are not ‘othered’ but those elite, wealthier clients,
Friends, close knit communities, side stepping those who need care,
depend on care, medicine, welfare of those systems apparently,
in place to care, to share, to save lives and make people better.

In sickness and health do state do us part.

Grief – What does it look like?

/ Maria Thomas / Leave a comment

It’s four weeks today since dad left us and how does the world look? Lonely, hollow, in a daze. People are talking and I’ve zoned out, or I’m exhausted or I’ve forgotten what they have said. Currently, silence is my friend. Coming home after work has been difficult as some days I would usually go straight to see dad. I realise how much I am holding in and I cry when I get home or on the way home.

It’s hard to be honest at work as to why you want to leave work, to go and speak to your therapist but there’s no way around explaining why you need the time, it isn’t a given. Equally I am grateful that work understand and have given me the time off. 

I’m starting to feel anger towards all sorts of things, little triggers. I feel irritated by the smallest things and at the same time I know they are small inconsequential moments. I am fighting the urge to allow myself to become irritated by people and moments and I know this is not me. I am justifying, reflecting within myself, having conversations over again within to make sure what I am thinking is actually from a genuine place or from somewhere else.

I told my therapist recently I understand the light and the dark can exist all at once and that’s okay. Probably the biggest take home from her since I started having therapy. The light and the dark feels deeply vast and expanse. Although the darkness is more attractive and can feel comfortable as I have been there growing up and through moments of my life.

I am getting married next year and I had two scenarios in my head, either see my dad before I got married or see him the day before.  I honestly thought he would be with me beyond 90 year which he would have been in April. How could I have been in denial for months. I weep and sigh, I thought I had more time. In reality I had the best of times I could have had under the circumstances. 

One of my closest friends spoke to me the other day, she was the one person who checked in on my mum when she was admitted to hospital on various occasions and when she had lung cancer. She said “you have all this time to adjust to, you spent years looking after your dad”. I don’t think that has completely sunk in yet.

I think of all the things my parents didn’t get a chance to see but I remember all the things they experienced with me during their lifetime. There was something about wanting to be the first person to obtain a degree, the first person to get married in a western way. I wanted to make my parents proud and I know when growing up, nothing felt like it was good enough for my dad. As an adult and a reflective person, I know my parents came from their own lack of “enoughness” from their own parents and their own belief of what they hoped to achieve in life. I was a “people pleaser” for my parents as I wanted them to be pleased and happy with my achievements. There were many rebellious moments where I couldn’t give a f@@k and my parents didn’t speak to me. Ahh those teenage years but you have to go through them in order to understand or try to.

Poem
Hold my hand and tell me that one day I will see you again
Not on the shores of the sea, in the cold and grey
Not in the darkness and seeking the light
But on a bench where we sat talking, laughing, walking together

We listened to the birds, we watch the squirrels ferrying for nuts, the sky held a calm
We smelled the rosemary and the mint together, we held the apples from the garden
We sat on the bench and enjoyed summer days
I miss the stillness, to be or not to be moments, the smiles, the pain, the loss

I hear your voice still, I hear your laughter in my heart, I see your struggles
They were not nice, they were angry, fearful, lost in a world of non-sense
A world where we know this sense, this hollowness, this part of you or me
That dissolves into nothingness

The tension in my stomach has not left, the silence of my phone disturbs me
I miss your voice calling me, I know you’re with me. 
Dad – I cannot do this again, the caring, the arguing, the understanding, the loss 
at every stage. I cannot find the patience, the empathy, the many stages, the hurt,
the grief.

I ache, I hurt.

In Search of Myself

/ Maria Thomas / Leave a comment

For a long time I’ve been trying to figure out how to stay in touch with my intuition and guidance system. I feel blessed to meet people who want to talk about their own spirituality and will share what gifts they hold. Sometimes, I feel so vulnerable and such an open book even if I don’t share much. I can feel that I am being read, or at least I feel like I am. Notice the difference between the feeling of being “read” and the feeling of being “judged”. I used to feel judged but that was/is my own trigger that has been brought to the forefront of my own fears.

I am also aware there are times when I feel in sync with the universe and other times I allow myself to be consumed by the noise and be distracted by things that should not be within my framework of goals. And what exactly is my framework of goals? I still don’t know. I asked myself the other day “when did I last feel alive and one with the universe?”. It was a looooonnng time ago. There are always moments that I feel in sync but now they feel like moments of continual momentum. Not in the motion/active way but a spiritual inertia.

I am finding comfort in being able to speak about my spiritual, intuitive side as more people are discussing their own. I am always in awe of the gifts that people have to hear, feel and see clearly spirit or happenings. And living in a physical world does carry baggage of that limited, trapped mindset and how everything needs to be scientifically proved or have validity in some way. Not everything has to be scientifically proved, does it? There are many that believe in a god, can we prove this existence scientifically or is this faith of something more?

I am a curious being and like to question everything within reason, not necessarily for explanations but for perspectives. My mum delved into the world of faith-healing, fortune-telling, she read cards, palms and it fascinated me but also scared me.

At present I seeking more of an understanding of how I work, my own blocks; and to allow life to unfold by deeply trusting myself and my guidance system. “Guidance system” – what does this mean? An inner voice, a sense of timing, energy and space. Also, trusting the universe has my back. Does this sound all woo woo, maybe it is but what if it isn’t. Why do people say things like “It felt like someone walked over my grave?” or “I feel like I’m having de ja vu”.
I am so grateful for many things and at this particular crunch point it is helping me with utter grief that I feel daily.

.

My dad has lived with dementia and prostate cancer for the last 7-8 years and it has been the most difficult, traumatic time of my life. I can’t imagine what he is going through, how the neural pathways are disconnecting his memories, and closing off parts of who he was as a fully cognitive man. Am I denying death or am I seeking answers that will make it more acceptable?

I am conflicted, I am overwhelmed, I am cherishing all the moments I speak with him, hold his hand, hug him, see him smile because there are too many times the anger settles in. I feel he is in pain, physically, he is also probably angry to be losing his identity, basic functions of the things he used to know and do so well, so independently. He is losing himself in the physical world. How and why does this happen?

One of the things I recently learned about me, was that I was playing the victim, well at least saying something in a way to evoke sympathy and to make myself feel better, to support the fact that “I’m doing a good job as a dutiful daughter” by caring for him. I know that I have lived with a lot of guilt, shame, even hatred toward myself for not being a better daughter or a better person, for arguing with him before and after all of his diagnoses, for feeling angry for many unanswered questions, that his past was hidden from me, for not being able to say what I wanted to say or ask.

Along this journey for the last 8 years, I have learned to love myself more, take credit for fighting for dad and making sure he has a good quality of life, to uphold his dignity when needed and know that I made a choice to be there. No sad stories anymore but acknowledge the trying times, the hard times and no capacity times.

I hold myself through this time. I love myself along this path. I shine through even though another piece of me is dying, his memories are my memories. His loss is my loss. This last part of the journey has no words to describe. I’m still here. I’m making the best of the life I have.

I wrote the above during the week of 21st October 2024, I am now at 15 December 2024.

In the middle of all of this I joined an online event called ‘Alive’ by my friend Lois Tucker. She has since run a course called ‘Clarity’ which I knew I had to join as I was in the middle of grief.

My dad passed away on 26 November 2024, my sister and I were with him to see him leave peacefully. I was glad to be present and say goodbye in-person but it hurts and is one of the most difficult experiences to go through. I am now parentless, an “orphan” as a few described. Dad was buried on 28 November in accordance with his Muslim faith.

How am I? I’m not sure? I feel in limbo, I feel like I’ve grieved a lot already and I feel that I haven’t. I feel alright, I feel at peace knowing dad is at peace. I feel irritated, angry on occasions. I’m exhausted. I’ve gone back to work and welcome the distraction but could do with time off. I wish you could take paid leave for a month or so like maternity leave. My body has begun to untie itself and I can feel the aches and pains, I hadn’t before. I feel a slow decompression.

Everything has felt so surreal, in some ways I want to close my eyes and awake seeing my parents; having the chance to hug them again and tell them I love them. The transition from physical world to spiritual world is tough. I wanna hold my dad’s hand and tell him I love him and give him a cuddle. I want to feel the cool skin of my mum’s arm and tell her I love her and hold her close.

Some of my memories torture me like a time I came straight from work to the care home to see my dad before he had got into bed. I arrive just before 6pm and he called my name, Mya. Mya has always been mum and dad’s nickname for me, dad had the biggest smile on his face, I’d open the curtains and he was so happy to see me. We were talking away for the hour I was there and normally I take a photo of dad and me when I can, when he allows, allowed me to. I keep telling myself I should have captured that moment.
When I told my partner this recently, he said “if I had then I wouldn’t have been present to enjoy the moment in the way that I did”. He’s right. I had many moments with dad and feel so blessed I was able to.

Comfort zone or Fightzone?

/ Maria Thomas / Leave a comment

“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.

A Writer’s lover…

/ Maria Thomas / Leave a comment

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.

Acceptance

/ Maria Thomas / Leave a comment

After completing Mastin Kipp’s 40 day ‘Claim Your Power’, I wondered if I would feel enlightened with my “Creator”, ecstatic in the my “action steps” approach to following my goals and dreams; and quit my day job. Was I excited that my relationships with my partner and family were about to elevate to the next level?
I felt the anti-climax of when an acting tour finishes and you know you’re going back to reality, the next acting job hasn’t come along yet and you have to go back to those faces in your regular job which either you dislike or the job is soul crushing.

Do I listen or read these self-development, self-empowering books because I want to find the answer to what I’m not doing right, seeking the reasons why I have not moved further along in life, to listen/read to another person tell me if I’m not “working to my goals once a week, it’s a dead dream”. Is it about my dreams?

I figured through this process it’s about my approach to everything and just like juggling human nature and the personalities of friends or the dynamics of work colleagues; it’s my approach to life.

My dad was diagnosed with dementia earlier this year, I looked at the research to prove to myself I understood the levels, the stages, the ways in which this debilitating condition can take over. It’s a slow burn of fire dying out on a summer’s day, at its height it’s beautiful, powerful and sometimes uncontainable and at it’s low it’s ash blowing in the wind returning to the motherland. What am I doing about it? I’m trying to control it, the doctor is trying to control it and for the first time in my life, I don’t feel unhappy and alone. Is that strange? The support from the NHS has been great, the support from my partner has been incredible.

I’m able to take my Dad to acting classes, memory cafes, dance and fitness classes (with the help of another reluctant family member). We have got him a diary so he can write things in to remind himself of what he’s doing daily and who he’s spending time with.
The biggest impact and stress for me is knowing which are the important parts, hospital/doctor appointments etc. Since my Dad came home from Mauritius in 2014, the last four years have been applying to the council for a home, sorting his pension out, him being diagnosed with prostate cancer and then this year dementia. I wonder if life has it in for me but it’s not me it’s happening to, it’s him. I cry and want to scream and shout at the world “why is it all on me?” and it’s because somewhere along the journey, I have become the responsible adult in all situations, and the roles have reversed.  I wonder how I can put yourself first, stay on top of my health and deal with anymore? I can’t and I have to get on and find the time when I can. It’s not about complaining, it’s allowing yourself to feel frustrated and not beating yourself up for the guilt that is totally out of your control, and out of your hands.

So, back to the book, what has it taught me in isolation to this area of my life, “Acceptance”. A really difficult area to understand in it’s full limited, restrictive layers unless you understand yourself to a degree. “Acceptance” is the most enlightening area of my life right now. I find it difficult because it brings its friends “control” and “judgement” to back itself up every time but it’s my fears of this that has been difficult to acknowledge. Accepting, what I cannot change, the future. But I can change the here and now by looking at it through a different lens. I never thought I’d be talking to my Dad about his “After Care Plan”, they are ask questions, you’ve never been prepared to ask your parents before, “How do you want to receive NHS treatment, do you want to be resuscitated, do you want the doctors to give you all the medications available” and so on. About his Will and what he wants to leave to people, about all sorts, and i am glad to say thank gawd I found out about the Death cafe, because it helps to talk about death openly.

All my Dad can hear when I ask him about his personal life and history is suspicion, and he asks “why? Why is it difficult to see loved ones suffer, it’s because the conflict starts with ourselves, our views, opinions, judgements, influences. The reality is he cannot change, he’s not a man that understands how to to talk about his emotions and never really understood others. He’s complicated and has a limited view of the world because he doesn’t really engage in conversation to know who people are or understand the world around him.  So, if anyone had to change, it was down to me, I don’t want to be the dutiful daughter anymore, I don’t want to pat myself on the back and say “I was there when he really needed me”. I want to be more than this, so I realised it was time to create new memories, however short lived they might be.

I am creating new memories of fun. I never thought of my Dad as a scared, frightened, and stressed man knowing that life is coming to a close. Maybe we never really think about the time when our bodies will start to close down, and stop working in the way we hope it always will. How do you admit, you can’t remember people, places, things? How do you talk about death when you’ve never really discussed it with family?

I am really lucky to still have my Dad, he isn’t an extreme case at the moment, he still remembers, still gets about, still cognitive. I have to find ways in which he can answer questions that are too much for him all at once. I sat with him yesterday whilst putting on a TENS machine for his achy muscles and played some music from different periods of our lives and showed him old photographs. A simple action but really worth putting the time in. I recalled that all through my life at home, two of the most prominent memories I grew up with was music and photo albums. Dad had created those memories for us and now it was time to remind him of those memories and create new ones for him. It is time to have fun with him whilst I still can and because whatever time I have left, I don’t want it to be about appointments, doctors, medication and duty.

If I only had today…

/ Maria Thomas / Leave a comment

Today I came home crying, I’ve been here before, losing one parent was difficult enough, not knowing how long it would take, the journey it would take and how Cancer would play out. This selfish all consuming, all devouring disease with no inhibitions or care in the world just an egotistical swipe left ghost of a figure.

Why did I cry? The next part of the journey is a different equally challenging one, Dementia. A debilitating, short term memory swiping not quite disease. Still a condition that is labelled with stages from mild to essentially “no hope”. Still not answering the question, “why did I cry?”.

Gratitude – that  I had this moment today? Grateful that I had a day with my Dad?
Self-congratulatory – pat myself on the back because I’ve done my duty and spent some “quality” time with my Dad?
Guilt – that I didn’t spend enough time with my Dad?
Relief – that if anything happened between now and tomorrow, “at least I had today”
Sadness – that I wish I could have seen the signs earlier and spent less time frustrated and angry and more time patient and understanding?
Fear – that I won’t have anyone who will love and care for me in the same way if anything befalls me?

Did I cry because every time I’m there for my Dad, he says “sorry” for taking up my time, “sorry to disturb you”. I never make my Dad feel guilty and boundaries have to be made clear, but it makes me sad and angry to think why he has to say “sorry” and if others have made him feel like a burden or a bother.

The real reason is, I don’t know why, maybe because of all of the above things, maybe because I hate this fucking life with all it’s unfair, injustice shit it places on us. Maybe I’ve had too much wine (two glasses), “maybe it’s because I’m a Londoner and I love London town…”

I chose today, I chose to spend “quality time” with my Dad because in recent years, “quality time” has meant council visits to get him a home and benefits, hospital visits to find out he has Prostate Cancer.  It has meant finding out accidentally that I have a half-brother but with so many questions that will be left unanswered for my entire lift-time. And more hospital/clinic visits to find out that he has dementia and this is the next step.

Did I choose this life? Did I choose to have these challenges in my life to make my soul a more experienced, wiser being in the next life?  To develop to a Nirvana level in this life? How could I have chosen the pain, the suffering, the guilt, the worry, the stress; how? Because I am sure I would have wanted to be in the ice-cream guilt free zone of wealth, wisdom and ignorance, no?

I know I have this immense capacity to love, to give, to care and energy to encourage, but when I walk away, I am sometimes inconsolable with an undeniable outcome. Why was I never prepared for death or just the pain and endurance that one has to go through with life’s incurable toxins. These are not triggers from my childhood, these are not previous experiences before a certain age, this is fucking real life adulthood and it’s shit.

Do I sound ungrateful? Maybe? I sound fucked off with the cards I have been dealt with and I want to throw my toys out of the pram and rant and rave at how unfair it all is. But as most people I know say “it is what it is”. Fuck those words, it seems cold and calculating, a slap in the face of no mercy or prisoners to be found here. Take it or leave it? And I have to accept the inevitable, fate of destiny.

But fate doesn’t have to be a waiting game, I look to do everything possible to enable, to give advice, to make sure my Dad can do everything in his power, while he is capable to slow the inevitable down. While doing this, I have missed on two years of living life with him, having fun with him, day trips out with him, drinking with him.

Have I been selfish in thinking “Well, I was doing my duty as a daughter, at least I was there when he needed me the most, all the appointments”. Have I let my ego get in the way to think, “I’ve said all I can”, given him opportunities and now I can get on my horse and ride off with the knowledge that “there was nothing more I could have done”. I’m an absolute idiot if I think that.

I love my Dad and I don’t want our last months or years of memories to be sat down explaining to him that he has to think now about his funeral arrangements, his Will and whatever “end of life” endeavours he needs to consider. I want to have fun with my Dad, I want him to have fun with me. I don’t want him to get all stressed with me because I’m always talking about the seriousness of every situation.

Today I took him to three of my favourite special places in North London, spaces that make me feel like home never did, peaceful, a space to think and feel/be creative EZ and Moss. A place that always makes me feel like I’m part of the family Mento, Coffee and Flowers and a place “where everybody knows your name” Oak N4

The roles in life have now reversed, it’s my turn to look after, take responsibility of my Dad.  I’m glad I had today and I need to make sure there are more days like today.

Pain not hate!

/ Maria Thomas / Leave a comment

I hate how I feel when I hear impending doom, I fear the worse, think the worse, I want to scream at the world, at the gods, at the universe to say why do you fuck with our lives like this, take loved ones away so suddenly, I had no time.

“Are you sitting down, take a deep breath”, and the words flow, the news hits and my head is all giddy from absorbing. I don’t want to create a story in my head, I don’t want to think about my send off music, like a walk on music. I don’t want to hear someone I know is dead!

Yes, I know death exists, we have to all exit one day but why smack me in the face, why punch me in the gut, why queasy and sick, why all the moments that I last spent with them and all the moments I could have spent more. Why make me hate.

Where is my grief, is this it? Is this the sadness, another empty hole that gets bigger with each departure, am I part of the whole or the whole of nothing? Images of my own death, images of a peaceful sleep, no one wants pain. Images of how my loveds ones will react, will I be missed,  will I see them from the other side and at least feel them one last time.

How can I hate death when I don’t know it, feel it or haven’t escaped it, or maybe I do and that’s why my feelings are so prominent. Why do I feel time slipping away, reminded of my age, reminded of memories left behind that I never want to see or meet. Nothing about it makes me feel peaceful, gracious of my time, legacies I wish to leave behind. All it does is make me want to fight it, box it, kick it and rage at it.

Leave me and all the people I love the fuck alone! I accept its fate but fate is far away in a distant future. A future where cryogenics restores us, nanotechnology keeps us a live, that potion keeps us young and healthy forever, I don’t want disease, I don’t want to linger, I don’t want to stop fighting until I come face to face with you, and know it’s my time. Please don’t let it be alone, please don’t let it be tomorrow, please let me say to all the people in my life “I love you. I love you, I love you, I love you!”.

Stream of consciousness 

/ Maria Thomas / 1 Comment

Esteemed soul, divine purpose
drive to my minds eye of truth
take back the streams of consciousness
that drives me to mad endeavours
of momentary suicide
to die or not to die but to discuss
the righteousness of others that befell
Me
inherited wickedness of deceit
but who is the deceiver, them or me
lie me gently in the arms of
forgetfulness of resentment of
the quietness that is beauteous
the silence of numbness
that guilt free, pain free death
of selective amnesia
coat me with your paint, armour
me with destruction
self pity, self hate bears heavy burdens
on my mind, draining my emotions of
comfort. The comfort of hate.
leave my body innocuous cuts that fill
with swollen words of lies. The language
of desert storms blistering my spirited
youth into undefinable eras of old age.
search for me when time remembers
that I did once exist.

Half full, half empty

/ Maria Thomas / 1 Comment

Hand on heart, no words escape my lips,

the truth of a past I cannot relive.

Moments lost, memories gained

an injustice to the memories unnamed.

Where are you now? Who, what, how

did I get here, I know not this time

this place, this home, my space.

Cloudy, unrecognisable since you’ve left

the hole in my heart is still bereft.