Thanks so much for all your lovely messages to my last post. I’m not able to respond to each at the moment but I do appreciate each one.
I feel a bit like I’m in uncharted waters at the moment. The current is getting stronger, dragging me further out to sea and I’m struggling to find safety. I also know, a deep sort of knowing, that all is calm underneath and in fact safety is all around. Even if I drown I will simply return home. This knowing doesn’t stop the terrible storm raging on the surface though as well as the survival instinct that drives all life.
Take this morning. Me and my dog were at the park when a text came through from my mum. Our conversation (all via text) went something along the lines of:
Mum: Did you look up my diagnosis on google?
Me: Yes, I did have a bit of a look. It’s certainly very rare.
Mum: I’m not sure I want to look but also tempted.
Me: Well maybe wait until you’ve had scan results then decide what you feel is best?
Mum: Doctor said prognosis is very poor.
Me: Well they said that about your breast cancer too as triple negative but you were fine.
Mum: Yes but doctor said chemo and rads rarely work for this type of cancer, can only rely on surgery.
Me: Try not to worry, it’s best to take a day at a time with anything like this.
Mum: Yes I take things as they come.
I rounded up my dog and left the park with tears in my eyes. It hurts so much to think she might be considering her death and even be frightened about it. My mother is such a strong woman; she has a will of iron. If anyone could beat this, she could. But I hardly know what to say to her. I don’t want to lie and say she’ll probably be fine when the outlook is bleak (she could look up her prognosis anyway) but I don’t want to paint a terrible picture, either because where there is life, there’s always hope. People beat cancer against all odds all the time, even rare cancers.
I’ve just never had to deal with a situation like this. Even with my spiritual faith it is taking everything I have. I still don’t think it has fully sunk in. The good thing is I’m functioning. Somewhere at the back of my mind i know life goes on whatever happens, good or bad, miracle or utterly predictable. Tears come, then I find something to do or somewhere to take them. Maybe that stems from the calm ocean from which I am made. I hope I can comfort my mother both before and after surgery with the knowledge that we are all spirit at the end of every day.
I’ve had some difficult news about my mother this week. She has a very rare type of uterine cancer and is waiting to see if it has spread. Against her advice I looked it up and found that it is very unusual, very aggressive and carries a poor prognosis. The first step will definitely be surgery, but after that we just don’t know. She has heart and lung problems so chemotherapy may not be an option as it was a few years ago when she had breast cancer.
In addition, my father was diagnosed with advanced prostate cancer (with bone mets) last summer and next week the status of his cancer is being checked since there was a slight raise in cancer markers. This is the same week that my mother is being told whether hers has spread.
Needless to say, it’s a very tough time and I will be going to and fro from my mother’s house to help her out and to return home to see my son.
I thought I was coping pretty well but two days later I’ve realized I’m finding it difficult to concentrate and eat anything substantial. It may be easier after next week…. but it may not.
As always I appreciate any thoughts and prayers. I will check in as much as I’m able.
As often happens after I send out a prayer, something rather synchronistic happened today.
Last night while meditating I also sent healing energy to my son’s dad who I know is struggling emotionally right now. We don’t really get on and talk very little but I hate to think of him suffering. In fact I hate to think of anyone suffering because I know what it feels like.
The energy I sent was in the form of pink light or metta. I tend to visualise pink for healing because it symbolizes unconditional love and it seems a very potent visual to use. While sending this energy I was aware of the struggles between myself and my son’s dad and tried to focus on compassion for him; my desire for his suffering to end.
Earlier today I was walking my dog when what did I see but a flourescent pink feather laying on the ground. I am very tuned into objects on the ground and I know I have never seen a pink feather before. Plenty of white ones certainly, as we have lots of sea birds around here, plus some strange things I have pocketed, but never a pink feather. Feeling really chuffed I took it home.
In my world there are no real co-incidences. I’m sure it could have fallen off someone’s boa since we don’t have any bright pink birds flying around here, but even so it has come at a very significant time. Pink symbolises compassion, empathy, unconditional love, all matters of the heart. I like to take it as a reminder none of us is ever alone and what we do and feel matters.
Yesterday after a lovely lunch and trip to the seafront with my boyfriend I sat on the bus in the centre of town waiting for it to take me home. It was the mildest day of the year so far and the bus and town were both packed solid. Among the crowd passing my window I noticed a little girl of about four or five and a man – persumably her father – waiting for the bus to move. The child hopped around the pavement and every so often waved frantically at the passengers. Most were elderly women who waved back in delight. It was a few minutes before I, and perhaps the others, realized that the child was waving at her mother who sat the other side of the bus. It was a beautiful scene and yet there was sadness, perhaps the sadness that is always in my heart but usually unreachable.
I looked beyond the child and her father and found myself staring at Mothercare directly opposite. A young woman was making her way through the doors, her large bump visible through her clothing. She was accompanied by a young man. The sight took me back to my own pregnancy which was not an easy time, trapped in a relationship that with hindsight was extremely unhealthy. What kept me going was the longing for motherhood, the desire to give a child what I’d never had, the expectation of a happy future, one that had a purpose. I remembered the delight at buying tiny doll-like clothing, staring at an amazing array of newly designed pushchairs, car-seats, slings and more. Among a lot of worry and difficulty, there was hope in a new birth.
I found myself wondering if the young mother ever imagined her child might be disabled. I don’t think anyone ever does. In giving birth to my son and in the years that followed there HAS been joy and good times, of course there has, and yet underlying the whole experience has been a massive sense of loss, not just in terms of his disability but my own. Due to my chronic illness it is unlikely I will ever have another child. This is a realistic assumption to make given my age and my current state of health. I have a boyfriend now but he is also in poor health and we have agreed we would not be able to cope.
Mostly, I accept this, I have strong spiritual faith and I believe it was just not meant to be. My life is just one in a billion lives. Who am I to say what I am entitled to? I am not in charge of the game plan. On another level I am happy to never get pregnant again because I could not bear the worry that I would have another disabled child. This is not unrealistic since autism is genetic and I see autistic traits in myself, particularly in my childhood when I used to stim. Furthermore I will hopefully have a greater sense of freedom as the years go on. I do hope to improve my health even if just slightly and I don’t really want to be tied down into motherhood again. There are many positives to be gained from not having more children.
But of course none of this takes away my sadness. It is always there – the sadness of loss that seems to define my life. I don’t mean to sound a victim by that statement. I am mostly at peace. I accept I could not physically cope with my son full time and I know he is in the best possible hands. But I feel the loss of him – his physical presence, plus the loss connected to his autism, the loss of what never was and never will be. When I witness scenes like the little girl shouting to her mummy through the bus window I feel much more acutely the loss of a similar connection. I try to connect to my son but more often he is in his own world and moments of true connection with him are rare. I feel the loss of the motherhood I longed for. I remember what I hoped for and imagined and realize just how difficult my life has been. I also feel immense guilt that it has turned out this way, both for my son and for his father.
This is a grief so massive that I never speak about it to anyone, only in therapy and I don’t go anymore. I have comes to terms with much of this, particularly when I lean on my spirituality. Therapy was a wonderful source of support for many years and I am profoundly grateful. These days I feel that talking to people only brings out the ‘Oh how awful’ empathic response which reinforces my pain. I have realised that no amount of therapy is going to take my grief away. There is a huge loneliness that comes with knowing that. I have found comfort in realizing the sadness in my heart will always be there and is part of me. I don’t know if it’s self-pity or whatever else, but I know I will die carrying this sadness which I can’t expect anyone to fully understand. At the same time I wish they could. While on the bus I was hit with a powerful desire to sob and sob and for them all to see it…for my agony to be visible. Of course I didn’t do this. I was happy for the mother of that little girl. And for the pregnant woman in Mothercare. I really was. Just sad for me.
As I sat in meditation last night I sent up a prayer of longing; help me come to terms with my life, how it has turned out and where it will go in the future. Help me find a way. As my child bearing years come to a close which could be in as little as four years, maybe a few more, help me to cope with the loss. I felt a longing to be understood that stemmed from a deep existential aloneness. It is something I have always felt, but much more so in recent years.
I realized this morning that I can at least write about this pain and in that sense I’m not quite so alone. I’m not really looking for sympathy, just a way to voice my feelings. Maybe it will help someone else, who knows. It certainly helps me. I’m just another human being with sorrows over my life and maybe they pale in comparison to those who live in war zones or have little food or clean water but in it’s all suffering; our common humanity.