Anxiety is far too often an unwelcome visitor to our house. I have suffered from it since childhood. It got so much worse after the world changed. Never ending road. Virtual all the worries now focused on our son. Not sure I am that bothered about myself these days….
This morning I woke to that unwelcome guest again. So many voices in my head. All saying the same thing … son is due a anxiety meltdown. Unfortunately that was the truth.
Anxiety and Depression are real inhibiting factors for so many in our society. Research clearly indicates that the risk of suffering from these awful conditions are increased for those living in the world of autism. At least a two fold increase is often reported. Yet from personal experience this was never identified in any of the briefings or guides we received during our journey. It is just not addressed appropriately by society. This can and does have catastrophic results. In our case it took several years of pushy parenting before our son started to get some help.
It’s so difficult to unpick the anxiety for our son. Is it Aspergers related, is it Dyslexia related, is it bereavement related, is it human life anxiety, is it all four….
With our son we have a frequently returning swirling mix of worries and demons. They recede then they blast back. On really bad days they all materialise at the same time. He has many repeating spectres.
- Dyslexia and it’s unwanted consequences.
- Friendships and social interaction.
- Not understanding this strange, alien world.
- Fear of death (his, mine, his pets, his remaining family, the people he cares for).
- Related to the fear of death is his fear of illness. Everything is catchable. Everything can be a risk. Every sneeze, every ache, every speck of dirt is a potential harbinger of a health disaster.
- School. Homework, rules, punishments, no support, cold and scary environments.
- Feeling different, feeling inferior, fearing the finger pointing, fearing being laughed at.
- Running out of money, going broke, losing everything.
- The climate, wrecking the natural world, world politics, Brexit. World is going wrong.
- Being alone.
- Having to fit into large social groupings.
- Fear of being long term depressed.
This is someone so young.
Today it is the return to school and fear of illness. The anxiety vortex is building strength. The bag of tricks we try only helps take the edge off but doesn’t fix today. All we can do is just be busy. Constant activity. Try to stop the mind thinking. These apply to both of us. My world is full of anxiety today as well….
Somedays you wake and the world is full of hope. Yes it’s a challenge but you stride purposely towards the light.
Whether it’s the alignment of the stars, or the moon, or the lack of sleep or the weather or the cards are stacked against you or the demons have woken ….. but for whatever reason somedays the world appears different. You are alone and operating without a safety net. It’s is dark, cold and scary. Often I liken the feeling to a Tolkien like scene. You are stood on the ramparts of Helms Deep. It is cold and the rain pours. You are besieged by an evil army of Orcs. But this time you are stood alone and Gandalf isn’t riding over the hill top to save you that day. You feel like hope has deserted you. A battle you didn’t ask for and one you cannot win this day.
In climbing the dreaded word is cragfast. Basically you are stuck. You can’t go up, down or sideways. Less polite terms also exist for this ……
My mind drifts to The Eiger. Back to 1936. Four young climbers attempt to be the first to scale the infamous North Face.
Andreas Hinterstoisser, Edi Ranier, Willy Angerer and Toni Kurz.
On the ill fated ascent Hinterstoisser opened up the mountain with an astonishing traverse now named after him. Tragically they decided to remove the ropes they had fixed in that section. A huge storm set in so they tried to retreat. They discovered that the Hinterstoisser traverse could only be completed in reverse with the aid of fixed ropes. They were suddenly out of options. A suicidal decent was attempted. Over the next few hours three climbers died. Rescuers got close to the remaining climber Toni Kurz. But they did not have enough rope to reach him so they had to retreat leaving the young climber stranded. They left to the echos of a climber pleading not to be left alone. The next morning a second rescue attempt was launched but they found the young climber close to death. He quietly said “Ich Kann nicht mehr” – I cannot go on. He died feet from rescue.
The German 2008 movie of this tragedy “North Face” is one of the bleakest movies you will ever see. I have stood at the bottom of the North Face. Your mind can’t help thinking of those brave young climbers. Too many climbers have been lost here. It’s a truly cathartic experience.
What is the point of this post. I am not sure. Maybe it’s just about saying that life can be bleak and dark. You will come across times when you become stuck – cragfast. You find times when you are on the ramparts alone. You hope that when that happens people will come to save you. But rescues sometimes fail – even heroes stumble. These are the times you have to stand alone. Those are grim times. Times we must endure. You hope to just make it through the night. The morning may bring new light or a hero. Or you may have to struggle on for another day alone. It’s a sobering thought.
Just after my partner died I remember reading a book which suggested that grief was like a black hole. All consuming yet over time it’s energy shrinks and eventually it disappears allowing new life to replace it. I’m still waiting….
Everybody is different. Everybody deals with grief differently. This approach worked for the author but not for me.
Maybe another way to look at it could be that life exists outside the black hole. The black hole is always there. Somedays it’s powerful and sucks so much life force out of your universe. Other days not so strong. But the key thing is that although it never disappears a new life exists outside it – it’s your choice, your journey that determines how far you move from it. – that’s a bit of my inner Carl Sagan coming out in me.
My current take is a little different. It’s a dark place with doors – maybe it’s inside the black hole. My thinking is that when Bereavement occurs doors begin to shut (many permanently) on my old world. My old world will always be there I just can’t go back to it. It’s up to me to decide if I want to continue to stand next to these closed doors. As well as doors I will also discover windows into my old world. Those windows are too small for me to re-enter my old world but they do allow memories to enrich my soul. In the darkness other doors are created. They lead to new worlds, new experiences. On my grief journey I will come across these new doors. It’s my choice whether I decide to open the new door opportunities or not. Maybe I will make a few drinks, pull up a chair and take my time.
I carry my family’s trait of not having any sense of direction. What could possibly go wrong with me stumbling about in the dark trying to find some random doors…..
5 Days 14 Hours xx Seconds
No my blog has not been sponsored by Jack Bauer and the 24 TV Production Team. It’s the time I’ve gone without speaking to anyone (excluding our son). I’m not sure if I should be proud or a tad worried. Maybe both.
So almost a week without a phone call, chance meeting or random conversation. Even on two long runs – didn’t bump into a single person. Its one of the prices you pay for living in a small village.
It’s an odd feeling. Have I been secretly ostracised. Has my liking for Nickelback finally caught up with me…….
I had assumed my streak would have ended today as today was the food shopping trip. However I managed to get round the aisles without uttering a word. I did smile a few times at random folk. Surely a conversation will be struck with the assistant on the cash till. But no. All the tills were full so I opted for the self service lane. No scanning problems encountered so the streak continued.
Tomorrow I have to go to the work unit but that is in a largely deserted industrial estate and I will be the only person in our building. So the streak may continue into Thursday. Hang on a minute Thursday is Valentines Day. Wow am I going to be seriously cranky by the 14th…
Anyway we have started a little wager, who will break my streak. I’ve gone for a random cold caller with my first words being “will you just bugger off”. Son is going for the postman or randomly a lost Donald Trump.
I will keep you posted…..
The pre Valentine onslaught is in full swing. One advert claiming to have the perfect gift for my partner, every base covered….. Really – every base?
I’ve always been a daydreamer. As a child dreams of football, cricket, astronauts and mountains dominated. They gave hope. The years went by and still I dreamed. Dreams of happiness and a successful career. Then I met my partner and the dreams changed. Suddenly dreams focused on starting a family. Then our son was born and dreams shifted to happy family life. Few years further passed and it became more likely no more children would arrive – again my dreams shifted. Now they were dominated by images of us happily growing old together. Walking hand in hand. Sat together in Parisian cafes. Sharing new experiences in new lands. Dreams and hopes intertwined. Then the world suddenly changed….
Now I live in the moment, just focused on the practicalities of the day. When I daydream now (very rare) these are entirely focused on our son. Dreams involving me have gone. When I look – nothing. They died with my partner. No happy thoughts of growing older. Just the deepest blackness. I have heard this phrase used before. Living our lives through our children. It is so true. One role.
One day I do hope my daydreams return. Some things don’t change. I am still a daydreamer at heart.
Death is inevitable but so so tough to comprehend. It’s hard for a grizzly mile worn traveller like myself to cope with, what on earth is it like for someone so young. Especially when it’s now 5 major deaths in 4 years. He’s only 11.
My son living with his Aspergers finds comfort in routine and orderly plans. Bereavement doesn’t fit into this ordered and planned world. Suddenly the world shifts, things are never the same again. This complete paradigm shift seems to manifest itself as shutdowns in his processing skills. His fine tuned memory becomes vague and unreliable. Concepts and principles become just random jumbled images. Simple tasks become complex nightmares. All he can think about is that the world and his happiness will never be the same again. Completely lost in this alien world.
Another aspect of Bereavement is a sensory one. Our son constantly fights to control and deal with all the sensory inputs flooding his body every second, every minute, every day ….. hardly ever receding. He has talked about death ramping all these sensory inputs up several levels. Suddenly the noise in his head is louder, he can feel the heart pounding, his skin is oh so much more sensitive, the unsettled stomach becomes a whirling vortex. He is trying to understand death while coping with this sensory storm.
When Bereavement occurs so many worries resurface for our son:
- Fear of his own mortality. Suddenly every cold, every encounter with an unclean surface, every bump, every cough is a potential path to death.
- Fear of his Dads mortality. No backstop, no second parent. Images of sad kids in cold foster homes like Harry Potter or strict Victorian orphanages flood his mind. How many movies have this as it’s premise.
- Fear about losing special loves he will encounter in the future. Is the safest option to just shut the world out.
- Bad things keep happening so they must be the norm in life.
- Is it me. Am I to blame for this.
- I just can’t find order and rationalise things anymore.
- You learn to love, you learn to trust, then it is gone.
I think that final fear underpins everything. Trust in life for our son is hard to establish. He works so hard to build those bridges. Death smashes those bridges, breaks his hard fought trust.
We have started the healing process. Recommenced all the stuff which has helped in the past. But each time it happens the path to recovery becomes longer and more difficult.
The irony here is that this post is about our son (my only focus) and yet those last two lines (without thinking) are probably about me.
We now try to move on. The motto we have adopted is ‘each morning we dust ourselves down and go again’. Next post I will talk about some of the stuff which helps our son. More uplifting. More humorous. It has to be that way.
Sunday’s are a time for reflection. For our son he is not at school but constantly worrying about going back the next day. Constant mood swings. It’s a transition day.
Dealing with death. That’s 5 deaths in 4 years. Again trying to comfort a heartbroken son. A quieter much less fun house. Transitioning to another period of darkness – again. Death is awful and is so so difficult for kids to handle. This grieving process is especially difficult for autistic children.
Trying to refocus for the week ahead yet still so tired from the past week. So many tasks to finish yet so many more tasks to plan.
Son having a couple of hours extra in bed. Hopefully shutting the pain out for a while longer. No laughter, no talking, no warmth. Trying to think about the coming week yet realising the house feels so empty – again.
Hopes for more social interaction yet still strangled by the isolation of the preceding week. Day after day, no phone calls, no chance meetings, no…… I am so so grateful for my friends reading this, you literally are my only connection.
Trying to plan for the educational week ahead yet so frustrated with the constant battles with school. Yes progress but why does it have to be such a tiring fight.
Trying to plan ways to make our son happy yet so broken inside.
I think that’s why Sunday morning is always the time that the icy grasp of sadness is strongest. Especially this Sunday. Ice cold thoughts echo round the confines of our home. Self doubt takes hold. I have never been able to break this cycle. I certainly won’t break it today. Probably never will.
Working from home does have so many advantages. Fundamentally it gives me the scope to flex work around our son. The days of my career coming first have long since gone. Trust me the career first option is the wrong choice.
But home working is not without issue. The biggest one I find is the isolation. I just don’t meet people face to face anymore. This week I have had only one face to face conversation with someone not in our little family group. That’s why blogging is such a blessing for me.
Isolation. It’s bizarre that like our son I often dream of shutting out this strange world on our own deserted island. Yet isolation in ones own house doesn’t tick the same boxes. It frequently draws you into prolonged periods of sadness. Without our son in the house, it seems so empty, so many echoes of the past.
Today my thoughts kept drifting back to holidays with my partner. One image on repeat loop. An image which is on my screensaver. Sorry it’s Switzerland again. I always seem to be blogging about that beautiful country. It was just so special to my partner. The view is looking across the edge of Lake Thun to Spiez Castle (Schloss) with beneath it the hotel we stayed at adjacent to the water. Many days this photograph brings so many happy memories. However today I just keep thinking that I won’t be able to share this view again with my partner. Sad face 😔.
DEEP BREATHS – MOVE ON
Grief is a double edged sword. Yesterday felt like repeated thrusts to the heart. Focusing on what has been lost. That ‘why did it happen to me’ feeling. Everything reminded me of the loss. That video. Sad songs. Radio advertising – anything from where to go for your romantic Christmas meal to the perfect present for your loved one. Her favourite painting. Her favourite cat. That empty bed.
The walk, the wet walk did help a bit. It did help me get focused and ready for our son.
Today I’ve experienced the other side of the grief sword. The positive side. Now the focus is on how privileged I am. Even someone like me was able to experience 16 golden years. Romance. So many happy memories. A beautiful, perfect son. Grief is really everlasting love. That is something which can’t be lost.
Everyday I find a quiet part of the house or garden and just sit and think. I think about the loved ones who are no longer with us. Just 10 minutes of reflection, but it is so important to me. Just trying to remember some of the key moments we shared. Trying to reconnect. They may not be here physically anymore but in my mind they are still here, still part of my life. Today I remembered a trip to Lauterbrunnen. Holding hands with my partner drinking in the alpine air and watching in awe at the spectacular Staubbach Falls
The reflections are uplifting but are tinged with sadness.
Such a happy memory but oh so brief. Little did we know how few opportunities we would get to visit this wonderful alpine setting together. Sometimes life is hard and painful but I am thankful that I have these memories. Thankful that I had that brief moment in time and also thankful that now, a 1000 miles away Lautterbrunnen is there. The falls are still crashing down given other couples the same opportunity to create their own brief moment in time. So today on this day, this somber day I am sad but oh so thankful.