Recovering from surgery

I haven’t posted much lately because I’ve had so much going on. After coping with my son and all the issues around his behaviour, housing and finances, I went into hospital for scheduled surgery on my foot! This was on Monday 5th September and I was due to have the other foot operated on tomorrow but due to the Queen’s sad passing and funeral it has been postponed to the 30th. I’m glad because it gives me more time to strengthen the foot that has had the operation especially as there is a recovery time of 3-6 months on average and I wasn’t keen on my surgeon’s determination to do both within a short space of time. That said, my foot is healing, but I can’t rush the process with my pre existing issues.

I’ve been feeling vulnerable but at the same time proud of how I’ve managed almost entirely alone with the aid of an electric wheelchair! For three days I couldn’t even put my heel on the floor. Plus I had a bad reaction to the codeine I was prescribed and was violently sick for 24 hours. I coped. I wish my friends had checked in more, but I’m okay.

I will write a longer post soon. I’m reading many of your blogs and getting comfort from them.

My pathless path

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I’ve realised that I’m never more at peace than when I’m not trying to fit into any one way of being or belief system.

The path is me: there is no other and there never has been.

As a young child I knew this; I talked to God, journaled, prayed, but walked my own unique path, always aligned with my heart.

There are tools, teachings, guides, but ultimately everything leads back to where I started from: myself.

For a time I thought this egotistical, but then I realised this is the very point:

God/spirit has planted the seed within me and my journey is about connecting with it, trusting it, and allowing it to flower and bloom.

Life circumstances, by pure chance or design, have meant that my inner journey has always been the most important one of my life. In fact, the ONLY one. People and situations have only sought to show me that.

There is no outer path beyond where experiences take me. When I try to find one, I suffer. When I try to fit in the world and crave things that weren’t meant to be, it causes me pain.

The Sun is shining through the fog once again. My soul has awakened. And yet the grief, the desperation, the search, it’s all part of the rich tapestry of what it means to be here.

A dream of my son

Many years ago when my son was 9 years old I had a dream that I have never forgotten. He was talking to someone about me and told them his mother was beautiful and still a teenager. (My son has been more or less non verbal since birth.) I was so excited (within the dream) about this that I started telling a group of people that my son had actually talked to me! I told them ‘it was real, it wasn’t a dream, I’d know if it was a dream’ Then a powerful wind started to blow me off my chair and I held onto a person next to me as the energy swept me almost completely into the air. At this point I woke up to the sensation of energy pouring down my head and arms like water. I had been attuned to reiki a couple of years earlier and believed that was what it was.

I’ve had many amazing dreams in my life but this one really stands out. I’ve never had one like it before or since. My son has never talked and most likely never will, beyond a few words. I’ve grieved a true connection with him my entire life. Around the time when he was 9 years old, I was profoundly depressed, so some may say the dream was wish fulfilment, something I desperately wanted so I concocted in my mind in the form of a dream. But I knew it wasn’t. There was something sublime about it, reinforced by Divine energy surrounding me both in the dream and on waking. I think it was showing me that this life has a purpose, as painful as the situation is.

I wasn’t a teenager when I had my son, never mind when he was 9! But I think the dream meant that developmentally I was still learning, still growing, still evolving. I was a soul on a journey and I was nowhere near maturity, but I was developing in my own time and way. It’s interesting that my dream refers to the notion of dreams and reality – what are they? I remember feeling so strange in the dream as the energy began to lift me up, as if it none of it was real – but what? Did I mean my dream reality or the waking world? Is there even a distinction? I said ‘I don’t feel real’ right before I re-joined the world of the awake – did I simply know I was dreaming, or did it point to something more profound: that none of this is real but the expression of Divine energy? Even my son talking in the dream may not have been real but another expression of the energy manifesting in a form I wished to see, needed to see. In that sense, maybe it actually was wish-fulfilment, but for a deeper purpose; to enable me to remember what life really is and connect with it, allow myself to immerse in it, know myself as it.

As I look about me, I am often filled with such intense grief that I have not had the opportunity to connect with my child in the way I always wished, and now, at age 43 with a chronic illness, the odds are that I never will. It is easy for another to say ‘make the best of life as it is’ but far harder to do, especially when I have craved connection all my life. In some respects I don’t even want another child, I don’t have the energy for it anymore, but I wish life had been different. Sometimes this wish consumes me. I will never be a grandmother, nor get to share memories with my son, look at photographs. Little things like that hurt massively.

It is a complicated grief because my son hasn’t left this Earth, he is very much alive. Yet I still feel the loss of him immensely. I feel the loss of everything we didn’t have and never will. I miss what could have been. What does one even do with this? It’s not something that goes away. So I remember the dream that brought me some level of comfort. Hearing him talk within it is something I can never forget. I am so grateful for that. And he acknowledged me; he said I was beautiful. That touches my heart. I doubt I will have another dream like it but I pray it stays with me and I will understand it’s true meaning for my life.

How?

I wonder if spiritually minded people are more susceptible to taking responsibility where they perhaps shouldn’t? Sometimes a higher state of awareness is a curse rather than a gift.

A male friend and I have been spending more time together and have decided to move our relationship beyond what it had been preciously, at least for a number of years. The problem is, on doing so, we’ve realised his health is worsening and it may not be the right thing for him.

I feel immensely guilty. If I hadn’t brought the issue up, we’d still be friends and his health would be stable. It was my need for something more that caused the problem in the first place. If his issues result in his death, it would be my fault, no less.

At least, that is where my mind is going.

Life can be so darn hard. I wish I was less sensitive, less reflective, less aware. I would have a far easier time. I wouldn’t care about the impact of my decisions on anyone else. But I do care. I care too much. I always think I’ve gone wrong somewhere and that I’m dragging others along the faulty path with me.

That is my life in a nutshell.

I wish someone would come along and tell me that I never did anything wrong. I wish God, or the spirit within, could tell me that I’m fine, I’m not hurting anyone else, I never did. But I feel as if I am. I feel as if my choices have caused so much wrong.

My biggest desire is for the Creator of the universe to turn around and say ‘My dear, you never did ANYTHING wrong.’ But that will never happen because it’s all down to me to believe that and hope that and trust that, and I can’t right now.

I’m genuinely scared that my choices will cause my friend to die. I know he has free will too. And every right to exercise it. But I feel the responsibility of my awareness and knowledge that I could – you know – just walk right away from relationships and live a life of solitude. Does God want that? I truly don’t know. Are my human desires wrong? Have they always been wrong?

I wonder if I seem too dramatic if I say I don’t know how to live this life. I don’t know how to face the choices I have and their implications. I can’t cope with the pain I feel and see around me. Even a poor catapillar trying so hard to find fresh grass to eat. And then there is my friend who is sick because of my desire to find something more.

How does one do it. This is a real question.

Where the light gets in

I had a very profound thought during the night. I know I’ve read it somewhere but I can’t think where.

A couple of days ago I was telling someone how it went with my son on Thursday and I made the very sad but nonetheless true statement that ‘my heart will always be broken.’

Even as I said it, I sensed the truth; the immense power in those six words.

I was reflecting on this during the night and almost immediately another thought came to me, almost from outside myself, carrying the wisdom and grace of a deeper realisation:

‘This is where the light gets in.’

Suddenly the balance shifted from despondency to hope. I had a wonderful visual image of God’s divine grace surrounding the broken pieces of my heart like a pure golden light, filling in all the cracks and making it stronger and more beautiful than ever.

There is always a choice. Closing down to protect a broken heart seems the best option, but it leaves one cut off, alone and in darkness, where healing is impossible.

Jesus healed people. He restored them through their own faith. At least once he asked the person if they wanted to be healed. I don’t believe that he was suggesting they didn’t or stating the obvious; rather, he was inviting them to open their heart and accept what is possible through faith. Literal or metaphoric, the healing he brought upon others was only made possible through an open heart, which is the ultimate gift of love.

It’s all too easy to protect one’s heart from further pain and become hurt and bitter. This is the challenge of being human, especially in regard to deep traumas that laid the entire foundation of a life. Each of us has our own path to walk and obstacles to navigate, as well as the particular tools to help us through. Thankfully for us, there are so many teachers, past and present, who have pointed to the truth that we all carry within.

And what is this truth? In my experience, we exist in Divine love. We are eternal beings, filled with the grace of God/Spirit/The Divine, here living a very limited human life in all its glory and tragedy. The heart is the bridge between the two. When we keep it open, the love and light of God’s grace is always available to love and heal and restore us no matter how broken we feel.

Growing and transcending

I’m aware that each time I write a truly vulnerable account of how I’m feeling about my disabled son I probably lose a few readers – understandably so because not everyone wants to read about someone’s suffering, especially those seeking a more uplifting story – so I’m drawn to say thank you to those who are drawn to read my experiences and feelings, regardless of reason. Sometimes I feel very alone and it helps to write it down and know people are reading my words, even when I am going around in circles with the same feelings and issues, or at least seem to be. I really do appreciate it.

I know in my heart that each of us is on a spiritual journey to realising our true self – our Christ self, Divine indwelling, soul – whichever term you feel most comfortable with -and we can’t drop off the path no matter what we do or feel. Sometimes life can feel completely unbearable and I think it is important to be honest about the suffering because it is the freedom of speaking the truth that ultimately saves us. As Carl Jung (I think) said, ‘suffering can’t always be worked through, only transcended.’ I cannot escape my pain. It just is. It exists in a state of consciousness that is fully human and I love and respect it. It will never leave me for it is part of me. But it is not ALL of me. And therein lies the answer.

I think it was Mother Teresa who said ‘when you know better, do better.’ We experience life in accordance with our level of consciousness, so once we grow spiritually, we experience life, and God/the Divine, from a higher state of awareness. However, growth is not a linear process, as I know all too well. I have meditated and prayed for years and feel I have a healthy relationship with my spirituality and the Divine. I am always growing and evolving and increasing my capacity for unconditional love. The difficulty is when old wounds get activated, or, as Eckhart Tolle says, the pain body, and once again I am lost in the pain of wanting what can never be. The pain body is the emotional element of the conditioned self – who we believe ourselves to be in relation to the outer world. Some people call this the ego, and indeed I have done sometimes, but I dislike the term, maybe because it reduces it to an unpleasant sounding entity rather than being part of my being which evolved to try and help me live in this world, however misguided it has been. It also seems to suggest that my emotions are ‘wrong’ on some level. My emotions over my son and wishing things were different are not ‘wrong’; they simply are. I can’t imagine anyone in my situation not feeling this way; at least, not without a huge and permanent shift in consciousness to the extent that one’s personal history just doesn’t matter any more because one abides purely in a state of love. This ideal was perfectly executed in the story of Jesus.

Regardless of what I, or anyone else, think about the whole mystery of Jesus, whether he was real, a myth, whether he was the only ‘son of God’ or pointing to the potential that exists in all of us, it highlights that Jesus was both fully human AND fully Divine. He often referred to himself as the ‘Son of Man’ i.e son of humanity, rather than God! He fully embraced his emotions, his humanness, his fear, anger, reluctance, sense of abandonment etc. He befriended the hurting, lost and broken people. He must have felt terribly alone in a world that wasn’t ready for him and did not understand him. He suffered unimaginably horribly in the hands of others, feeling betrayed and alone, all the while trusting in God’s plan for his life.

The most important part of the entire story: Jesus was not left to die; he was resurrected into his Christ self which transcended all his pain and suffering and restored him to his Divine identity. His old self had to die for the new self to be born. Whatever one believes about this, there is a lesson in letting go and having faith, that our suffering does not have to define us, even if it is part of us for a time (even a long time; indeed, some of us live with deep hurts our entire lives and only find relief on physical death). The story of Jesus has always brought me comfort because this is a man who went through the worst torture that I imagine is possible to man, all the while feeling abandoned by God, yet loving and forgiving those who inflicted such suffering on him, who then transcended it all; a personal reminder of the renewal of all life and our own eternal nature.

When I feel crucified by my personal circumstances and unable to find relief in any of my life’s blessings due to feeling consumed by wishing things had turned out differently, I remember that fighting against my suffering will not work. My suffering results from a part of me who understandably feels devastated and angry and let down by life. I also know that I carry within me some part of the Christ mystery – my Divine spark – which both encompasses and transcends this human life. It is a daily juggle, holding those aspects of my being, but maybe knowing they are there and perfectly okay, is enough.

Between acceptance and resistance

Acceptance seems like the holy grail of spirituality and I understand why; it’s opposite is resistance, and as we all know, what is the point resisting something we can’t change? It’s only going to make us suffer.

I’m not even sure it has to be one or the other, black or white. Maybe there are shades of grey whereby I’m not accepting or resisting but stuck in some limbo state in between the two.

Only that, too, equals suffering.

Today I had to go down to the local government office to sort out a financial mess on my son’s behalf. I was told my son needed to accompany me so they could see him for themselves and verify that he lacks capacity to handle his own affairs. Due to his level of need, two male carers had to escort him, so we were quite a group heading into the building. I knew my son wouldn’t cope for very long and he didn’t; he became agitated and vocal, catching the attention of everyone else in the room, until the carers took him out for a walk while I spoke to a representative. I’m relieved that he at least didn’t lay on the floor which is what happened elsewhere in public last week, and he didn’t hit anyone, which is always a massive concern when he has a meltdown. No small blessings there.

The stress of the very short visit – in total, it probably took around half an hour, most of it on my own as my son had already been taken out by the carers – left me feeling so weighed down and hopeless. It reminds me of my desperation as a young mother trying to control my son who, as a six year old, ran riot around a restaurant gabbing food off people’s plates. Those times have gone. I don’t have to – and I simply couldn’t – manage him on my own anymore, but the same stress, the same heartbreak, remains.

I wonder if anyone who does not have a severely disabled son can even imagine what it is like. Children play up, especially when they’re young, but in time you can reason with them and loosen that all-consuming hold on them as they start to grow and value their independence. I have never lost that hold on my son. He is all consuming. He is unpredictable. He is terrifying. You never know what he is going to do. The only real way I have learnt to cope is detach myself. Not in the sense I won’t do all I can for him because I will always do that – but emotionally draw back, because otherwise the pain is too much to bear.

Maybe this is what I mean about being in limbo – not quite accepting, not quite resisting. This is my life and I cannot say I accept it. I often think about how it could have been. I grieve for the child I never had and never will have now. I grieve for the child – now adult – that I do have. I can’t imagine a day where that grief stops. I long for simple conversations with my son, Facebook comments, texts – the kind of stuff most parents take for granted. I long to see my son grow up and become independent – drive a car, go to university, get married. He will never do any of those things. He doesn’t have any concept of those things. I’m the one who wants them. I’m the one who feels the loss.

Am I resisting? If so, who wouldn’t? I don’t know, there are much better parents out there than me who devote their lives 24/7 to their disabled kids because they feel that depth of unconditional love and it’s second nature. I’ve never been that person. I’ve been ill all my adult life with chronic illnesses that nearly destroyed me. I simply never had the capacity to give my son that much of myself. I did the best I could. I still don’t know if it was enough but I know it was all I had.

I guess I’m only hurting myself by constantly thinking ‘what if’? But it’s impossible to stop. Maybe my acceptance lies there, in accepting this is where I am and how I feel and that life is so plain hard because I didn’t ask for this. I don’t have to be all saintly and spiritual about it if I don’t want to be. I don’t have to pretend. I can say to God that I wish things were different. I can feel God’s love for me and for my son and remember that Jesus was crucified in the flesh and in our own unique ways so are all of us in living a human life.

Anyone who copes with similar and has found a way to cherish their relationship with their child and their life as it is, I truly admire you. I journey on.

Hamster is sick

As well as everything involving my son lately, I’ve realised my poor hamster Pumpkin is sick. I’m taking him to the vet later but I’m not sure they will be able to do anything for him.

I’m starting to think I won’t get anymore animals as the pain they cause when they die is too much for me to bear.

My dog is 12 and a half and I truly dread the day she goes.

I know it’s the cycle of life and it’s never ending but the attachment one forms to these little creatures is enough to break your heart when you can’t see or hold them anymore.

And it never gets easier. It hurts just as much with one creature as any.

I entrust my beautiful hamster’s spirit back into the comforting arms of God if it is his time. And I entrust my grief as the outpouring of love gifted by his presence.

Witnessing a seagull’s near miss

This morning I witnessed a hit and run. The victim was a seagull, but that doesn’t make it any less upsetting for me.

Thankfully the seagull flew away, stunned but seemingly unharmed.

It had been among its flock which were picking at a large animal carcass in the middle of the road. One or two cars came by and slowed down and the seagulls mostly dispersed but one or two were too obsessed with the bone to worry about the cars.

As I was watching and waiting for a moment to go into the road and remove the bone, a car drove along with no intent to slow down and very deliberately drove at the flock; most got out of the way, one did not and hit the bumper with a thud. By some miracle it then flew off.

At this point I shot into the road and moved the carcass to a safer place while the seagulls watched, no doubt wondering what I was doing with their treasure.

The incident left me shaking and upset. Is a seagull’s life worth nothing to some people? Maybe the driver decided it was the seagulls ‘fault’ for being in the road in the first place. Would he say the same about a small child?

I find the lack of basic compassion really hard to deal with. I know that’s part n parcel of living in this world. I know many people don’t have empathy for birds, especially ones they deem a nuisance, such as seagulls. I’m not ignorant of those facts. I just find it really difficult to wrap my head around the intentional desire to hurt a living being and cause it suffering and pain. We live in a hurting world, I know. Hurt people hurt people (or animals. Or birds). It’s just…very painful to witness.

Patience and compassion are two wonderful virtues that are much needed in this world. No creature is less deserving than any other. No being deserves to suffer simply for going about its business finding food. I know some really ARE a nuisance and need to be killed for our own sake, but we can kill humanely. We do not have to inflict suffering. The intention to do so says nothing about the creature and everything about the person.

God bless every creature, including humans, who suffers and/or fallen victim to any one else’s suffering. Which, lets face it, is probably most.

Silver linings

It’s been a very painful few weeks but I am very grateful for the silver linings that have emerged as a result of my son’s hospitalisation. Whilst it’s been very far from ideal, my son has been calmer than he has in a while, a combination of the right medication plus 24/7 carers who he responds well to and a room and bathroom of his own (albeit off a busy ward). I am also grateful for all the professionals who have worked so hard to find a better solution for my lovely boy while not dehumanising him for the difficulties he has that led to being in hospital in the first place. He has a new placement in the autumn but it’s still a building site, so we have to wait. In the meantime he has a temporary arrangement in his previous home with the support of 24/7 carers. He should be discharged early next week.

Other relatives sadly chose not to visit, which meant me going every other day to do his washing and bring him food (he was not eating any of the hospital food). I wish others had shown their presence to my son, but I am grateful for the opportunity to really be a mother to him for the first time in many years, probably since my health forced me to give him to his father full time. My visits were positive. We bonded for the first time in a few years. He was pleased to see me and at one point lay his legs across my lap. I can’t put in words how much this all means. It has helped heal my fragile heart from all the pain of parenting, the loss and struggle of bringing him up, the feelings of disconnection that arose from only seeing him once a week and having to get past the obstacles of his dad and grandmother who often made it hard for me to visit. Moreover, it was a relief after the pain of visiting him in the assisted living accommodation where he wanted me to leave as soon as I arrived. Now I know this wasn’t personal but a reaction to his frustration and pain at living in an environment which felt out of control and that he couldn’t cope with.

I am so grateful to God/the Divine for all these silver linings in such an awful situation. I just hope and pray that my son’s discharge goes well and he thrives during the temporary placement and when he goes to the new one in the autumn.