I am going to take the humiliation and put it in a little air-tight box and hide it away in a dark and forgotten corner – a place to put things that can’t ever be resolved or figured out.A little (but growing) “too-hard” pile for life’s mysterious hurt. For what else can be done? There are some things that simply can not be figured out – they hurt, they humiliate, they confuse and thus can not be fully reconciled. Ever.
If only every bit of hurt in life came tied up in a little bow – a pretty little bow that says this is why this happened, now you can close the door.
The usual learning and growing from hurt proves difficult when one doesn’t know what is actually going on, only that it hurts. A bit of information can go a long way in determining whether to forget the hurt or to wait in the hopes that the hurt can be talked about and resolved.
“Love means exposing yourself to the pain of being hurt, deeply hurt by someone you trust.” Someone kind of wise once penned these words. Whether it is a spouse, a sibling, a child or the dearest of friends, loving another being really does cause a certain vulnerability. And being vulnerable is uncomfortable and yet wonderful at the same time. But would I have it any other way? No, I think I would much prefer to love, even if it does mean being cracked open like an lobster and gutted at any moment without permission.
Learn? Grow? Tuck it away. Move on. (Sometimes you just have to…)
Today I went to Sea World! It is a magical place full of all kinds of water animals. There were so many great animals, I can’t decide which was my favorite! I loved the colorful star fish and the baby bullfrogs that hadn’t grown legs yet. The dolphins always look like they are smiling and I got to touch one! They feel like shiny, smooth, wet rubber. Every where you look, there are giant seagulls trying to steal food from the dolphins and whales!! They are so cheeky, but so beautiful. The dolphins shoo them with a whip of their tales. They say, “Ee-eee-e-eeee” which means, “Get away from my fish pesky seagull!!” There are also seals and sea lions. They are cousins and look very similar. The picture below is a sea lion. I heard them talking in the bay outside my window as I went to sleep last night! They were saying, “Oo-oo-oo!” It was a great sound to go to sleep to.
I am so excited to bring you both here very soon.
The air smelled sweet enough to eat. There were flowers everywhere and they made the air smell wonderful. I have missed flowers while it has been snowing in Utah. I can’t wait until it it spring!
While I was walking around Sea World, I stumbled into a lovely pond full of squawking flamingos! They are tall, pink birds with very long legs and a very long neck. They are so beautiful. I have never seen them in real life before. It was a lovely surprise finding them.
Did you know that Killer Whales can jump really high in the air? They can also do flips! They make very big splashes when they land in the water. Some people in the crowd got very wet – but not me!!
I am so excited to bring you both here to San Diego so that we can all go to Sea World and feed the dolphins. The dolphins are very friendly. We can also feed the seals, look at the sharks, the manatees and so many other wonderful things!! I am so excited to show you the polar bears and penguins!
After searching LA for a friend that could not be found, I finally drove down to San Diego and I am so glad I did. THIS is more like it! The RNR that I have so desperately needed for months – even years – is here at last. LA and relaxation do not go hand in hand, especially imagining my friend dead in a gutter somewhere… But as I journeyed south towards the bottom of the US, I could feel the landscape opening up around me – even though I was driving at night – and I began to breathe again. Buildings slowly became more spaced apart and soon there were big patches of black without any buildings at all. Even in the dark I could see the contrast between the slum-like rich-poor bubble of LA and the spacious and peaceful San Diego. Room to breathe! And air to breathe. THIS is more like it. Although I hated to leave LA without finding my old most favourite friend, coming here is like the breathe of fresh air that I so desperately needed… and at a fraction of the price ;)
“Life is pain princess.” Sweet Wesley explains, disguised as The Dread Pirate Roberts. The princess has not guessed that he is really her true love. All she sees is the wicked villain who murdered her childhood love, her Sweet Wesley.
She had thought Wesley was dead for many years. Since that life-altering moment years ago – the moment she was told her true love was gone forever – her life had surely been pain. One monotonous day after the other of just existing, never truly living. Even marrying the Prince and promoting from being a poor farmer to a wealthy aristocrat, did not erase the pain of losing a true, deep, and most sweet love. The love of her life, so to speak.
Real love is funny like that – once felt in a life, that life is never the same.
Pain is also funny like that – once felt in a life, that life is never the same.
Even with untold riches now at her disposal and a handsome prince by her side – the things most woman dream of in life (just watch any Disney movie) – the Princess could not ease or erase the pain that was her life after losing Wesley.
Wealth can give us the means to momentarily escape the pain, but pain has this funny way of following us everywhere we go – have you noticed? And just when we think it is gone – that we have finally escaped it – it shows it’s face, unwanted, unwelcome. A horrible visitor, that does not know when to leave. And so we pretend the visitor is gone, but he keeps leaving the toilet seat up, and so we are reminded of his lingering presence.
Pondering life after 31 years of it, sitting hear by Phoenix’s bed in hospital, thinking of loved ones… and how much I look like my brother Glenn in this picture
Wealth can give us a tropical holiday to escape the pain; fun gadgets and toys to distract from the pain; medicine – legal and illegal – to take the body away from the pain; But is pain really something to be afraid of, to fear, to run away from? Do we skirt around the edges of it when we see it, run in the opposite direction completely, close our eyes to it, sweep it under the carpet with all the other dust of life or charge right through it – head first – and take it on as the life-changing foe it is?
Us humans inherently do not like emotional pain because it hurts. It is uncomfortable physically. It twists our stomachs – it takes over our physical bodies and it doesn’t feel good at all while it lasts.
I remember having a shower several hours after dad died in our living room while sitting in his armchair. I remember standing under the boiling stream of water and being almost completely overrun by a pain that is quite literally indescribable. If my body’s auto-pilot hadn’t kicked in on a subconscious level, I would have been a vomiting, limp mass on the tiled floor, incapable of speech, of recognising my name, of knowing how to wash my hair, of remembering that I had a son with special needs who needed me.
How does one draw focus while in that kind of pain? I do not know. And yet, somehow, I showered, got clean and dressed that day when dad died. I got up the following morning and took my son to his hospital appointment – he was having 3-4 days at the hospital each week back then. Life was hard and very exhausting without the death of my father – my strength, my beacon, my guidance counsellor – on top of having a beautiful boy with a mysterious disease. And yet I was able to wake up and get dressed that morning after dad died, I was able to speak to the doctor, I was able to feed my son, I was able to drive the car. Somehow. I felt like I was outside my body the entire time, but I did what I needed to do.
It is amazing what us humans are capable of in life, when we do not give ourselves the option to fail or run away. There is an untapped strength within each of us. It is part of being human – we all have it. Most of the time, we do not realise it is there, because we do not usually have to access it.
I have people tell me all the time that I am a strong one and was chosen to have two children with Rigid Spine Muscular Dystrophy for a reason.
So not true. I have a self-destruct button just like everyone else.
My children have a genetic mutation that both my husband and I passed on to them. I cursed my genes almost every day for two years.
But really, it is just crazy, random luck.
If it were true that all disabled children were born to strong parents who could ‘handle’ the emotional pain of it all – parents who were “stronger” than others – then there would not be so many disabled children abandoned at birth.
I simply chose to love. I chose to fight. I chose to do whatever it is that is needed to take care of these beautiful, precious, amazing humans that are half me. I cry – a lot. My stomach twists into a ball of grief, sorrow and worry – a lot. I feel sorry for myself – a lot. I feel sorry for my children – a lot. I melt-down – a lot. Then I pick myself up again and continue the fight for my children’s lives and happiness.
I get up out of bed every morning, because I have to. I feel the pain, because I have to. I cannot go and escape into oblivion with alcohol or drugs – even though there are times when I wish so desperately that I could – because my children need me at my best. They need me alert, awake, and on top of my game. They need me physically and emotionally present at all hours of the day and night.
My dad always taught me that with pain comes the largest joy of our life’s experience. Without tasting the bitter, the sweet is far less sweet and often unrecognisable. Pain intensifies the joy, when that joy comes along. The pain of seeing my children suffer and struggle to stay alive and be with me, has made their smiles and their hugs and the cute quirky things they say, so much sweeter; so much more valued; my love for them is so much deeper than it would otherwise be because I allow myself to feel and process the pain as it comes along in life.
Pain intensifies joy, when that joy comes along…
Pain helps me to love more deeply, appreciate more fully and care more sincerely.
I am not strong. I have no deep spiritual-base to draw strength from. Since illness has become a part of our lives, I have wondered if god even exists and still do not have the answer to that troubling question. All the faith that once gave me strength as a naive young adult, has shattered completely.
Now I am thirty-one and not so naive. I just do what I have to do. I swim through the pain and allow it to embrace me. I allow myself to feel it, to cry and at times I wish I was dead, just so I wouldn’t feel it anymore.
But then the sun breaks through. I get a clearer view. I feel my strength renew… (words to one of my favourite songs.) It always does. If you tackle the pain head-on with fists-a-fighting, you will eventually break through it and the sun will shine again – and it will feel much sweeter and warmer than the sun ever did, before the pain helped you to grow into a new person.
Feel the pain, even though instinctually you want to run from it. Embrace it. Know that you will be a fuller, wiser, more real person by the end of it.
Life is all about growth. If I stop growing and are just grinding away at life with no movement, I know it is because I have let my fears and sorrows beat me.
The US health care system is one bandaid fix, upon another bandaid fix, upon another. The doctors are as good as anywhere else, the staff are trained and the floors are clean – and yet as a country, the United States is ranked #37 as a health system by the World Health Organization.
This is because actually accessing care is impossible for tens of millions – even those that have health insurance, because they simply cannot afford to pay the bill.
The United States spends nearly $7000 per capita each year on health care – the highest in the world – and yet it is estimated that 18,000 people die needlessly each year, simply because they are uninsured or underinsured.
Phoenix’s intensive care doctor was sickened to receive her into intensive care three weeks ago. She was sickened because Phoenix could have had an RSV vaccination two months previous, but because of the highly inflated cost of $3,300 for three needles, we had to literally turn the delivery man away at the door. This was a very difficult decision for us to make and it ate away at me for weeks because Isis nearly died from RSV at Phoenix’s age, as many of you remember. Earlier that morning, Phoenix’s doctor had admitted a young mexican boy who had become blind from an untreated tumor – this tumor was untreated for the exact reason that Phoenix didn’t get her RSV shots – the cost.
Australia spends just over $3000 per capita and every person has access to care. The current Australian system, known as Medicare, coexists with a private health system. Medicare is funded partly by a 1.5% income tax levy (with exceptions for low-income earners), but mostly out of general revenue. An additional levy of 1% is imposed on high-income earners without private health insurance. As well as Medicare, there is a separate Pharmaceutical Benefits Scheme that heavily subsidises prescription medications. Doctors still make great incomes, nurse make more than they do here in the US and the public hardly notices the tax. (I personally never had the feeling that I was overly taxed – ever.)
As my sister put it one night sitting by Phoenix’s intensive care bed, “In Australia, we all take care of each other”. I hope to be able to sit by my children’s hospital beds in the future and be able to focus all my worry and attention upon my sick child living and recovering, rather than how on earth we are going to pay for it.
I hope for the day where we all take care of each other here too.
Welcome everyone! You are most welcome to my blog – loved ones, old friends and new friends. I look forward to hearing your views and comments, and getting to know you all over the next months and years. Hopefully we can share ideas and work together to make this world a little better :)
Although my blog may seem like a creative and artsy blog, I will actually be talking more about issues that impact myself and my family on a daily basis, like the US healthcare crisis. My art and creativity help keep me sane as I battle on, hoping and fighting for the change that is so desperately needed in the US right now.
The air smelled sweet enough to eat. There were flowers everywhere and they made the air smell wonderful. I have missed flowers while it has been snowing in Utah. I can’t wait until it it spring!
Did you know that Killer Whales can jump really high in the air? They can also do flips! They make very big splashes when they land in the water. Some people in the crowd got very wet – but not me!!
Love Mum
