Wow! It's been nearly a month since I last posted... My goal was to post at least weekly?! I am so caught up (and still learning) in getting this website 'right' and launched, that I've been living and dreaming it. I could blame my brain injury for making it too easy to 'tangle everything up' - and then I find out from my brilliant friend Ann Handley's post that my fears are really no different from everyone else's... Yay!!
My dream is to have a website that will help give back control of your own life after trauma; a website that will provide a community for those recovering; a dating site that is gentler and a bit more subtle than some; a fantastic directory that gives not only the names and addresses of therapists but also provides details of the types of therapy that they do together with a few words about them personally and perhaps even a testimonial; articles sharing the latest news and developments in rehab; stories from alumni (all of us?) about our traumas so that no-one ever need feel alone again...
I almost always wake up before the end of my dreams - they're a bit long! To have a chance at success, I really need a lot of help to 'get out there' and known about. Which I'm sure will come when it's ready...
But back to 'now'... The big event in the last month was a fabulous conference in Dallas, Texas for eWomenNetwork where an unimaginable 3000 - yes, three thousand! - entrepreneurial women met and shared and networked and supported each other with their businesses. What power we have...
On these beautiful days I am torn by the desire to just 'enjoy some summer' and sit under the oak tree outside with some lemonade! My son - who provides ReBuildingYou with it's IT - now has his first car with sleek rims and throbbing stereo and has discovered tubing in local rivers and partying on some of our beautiful beaches... So much for quick progress for the website!
But you know what? It's all just the way it is meant to be... Without a healthy dose of JOY, progress - whether with a website, business or rehabilitation - will come to a standstill or at least be slow. I forget sometimes to 'take my own medicine' and balance the Physical, Emotional, Joy, Cognitive and Financial colours of life...
So here's hoping that the summer will soak into your bones and that you can take a few moments to feel the warmth of the sun on your face. In the long run, better and more lasting progress will be ours!
With a warm hug...
Thursday, July 24, 2008
Wednesday, June 25, 2008
To Your Good Health, Adele...
This week I said goodbye (hopefully just 'adieu') to the doctor who made the single biggest difference in my post-TBI life: Adele Hern. Adele was my neuropsychologist (hard to say 'was'...) and she was the first person - one of the very few - who truly understands what my post-TBI brain is like.
Most people assume that because I look fine, I am. Which is great and I appreciate the vote of confidence. Mostly...
But if I try to explain how life really is for me, people look at me strangely, as if they're trying to read between my words and find the joke or the catch. Then they tell me how everyone forgets things, especially them, and they tell me how lucky I am. It drives me crazy! I've never wanted other than to be as I was. Sometimes I need to reach out and tell someone how it is for me. Often they can't hear and mostly that's OK. Until Adele, I felt very alone.
Adele is an incredible woman and doctor. She has an uncanny knack of understanding exactly what's happening inside the neurologically damaged head, giving you back a priceless sense of belonging. Which is something I had long since given up on when I met her. What's more, I know that she has been able to give this same, amazing gift to many others.
The invisibly disabled often go through life being misunderstood and mistrusted - and generally squinted at - as if they're 'pulling a fast one'. For me, I eventually started to believe 'them' and mistrusted my own instincts...
Adele Hern gave me back 'myself'. One of the most precious gifts a person could receive.
Thank you from the bottom of my heart, Adele.
Meanwhile, enjoy sunsets on a beautiful beach (my idea of heaven!) with a Pina Colada and your husband close by your side.
With much love,
Julie
ps... If ever you find yourself at a loose end and tempted to 'come back' - even for a brief moment, please call me. I would love the opportunity to share ReBuildingYou with you in some way...
Most people assume that because I look fine, I am. Which is great and I appreciate the vote of confidence. Mostly...
But if I try to explain how life really is for me, people look at me strangely, as if they're trying to read between my words and find the joke or the catch. Then they tell me how everyone forgets things, especially them, and they tell me how lucky I am. It drives me crazy! I've never wanted other than to be as I was. Sometimes I need to reach out and tell someone how it is for me. Often they can't hear and mostly that's OK. Until Adele, I felt very alone.
Adele is an incredible woman and doctor. She has an uncanny knack of understanding exactly what's happening inside the neurologically damaged head, giving you back a priceless sense of belonging. Which is something I had long since given up on when I met her. What's more, I know that she has been able to give this same, amazing gift to many others.
The invisibly disabled often go through life being misunderstood and mistrusted - and generally squinted at - as if they're 'pulling a fast one'. For me, I eventually started to believe 'them' and mistrusted my own instincts...
Adele Hern gave me back 'myself'. One of the most precious gifts a person could receive.
Thank you from the bottom of my heart, Adele.
Meanwhile, enjoy sunsets on a beautiful beach (my idea of heaven!) with a Pina Colada and your husband close by your side.
With much love,
Julie
ps... If ever you find yourself at a loose end and tempted to 'come back' - even for a brief moment, please call me. I would love the opportunity to share ReBuildingYou with you in some way...
Wednesday, June 4, 2008
Collective Energy
One of my 'best things' to do is sing with the One Human Family Gospel Choir . On Saturday night we performed at a beautiful old stone church - with lovely stained glass windows - called the Peace Centre. And it was full to bursting!
To be a part of a beautiful collective voice never ceases to fill my heart - and cover me with goose bumps. Alone my singing is pretty ordinary and it's a real challenge (after ABI) to sing in tune, remember the notes and the words and the timing, stand for a couple of hours, clap, dance, smile... I worry every time that I won't be able to do it.
But after the first few bars of music, energy from the whole choir runs through me. I am transcended somewhere special and for those precious hours I am no longer confined by my abilities alone or by my body. Alone, my voice was broken. Yet with some practice and as part of this incredible choir I am whole again - at least for that time. I am grateful for such an amazing gift.
It wasn't always this way. As a young girl I sang with my school choir and even sang one of the solo parts of Silent Night at Christchurch in England. Then my head injury damaged the part of the brain that governs the voice (along with many other parts) and I could never guarantee or control my pitch or tone - even in speech. I was sad to think that I would ever sing again...
My lovely friend Carolyn encouraged me for 2 whole years to join her choir - and when I eventually went, she was away! That first night I was terrified. Another good friend, Dominic, accompanied me and I tried several sections of the choir to try and find where I fit. Eventually I found the alto section. I struggled for weeks to remember the words and to try and learn how to use my voice again. Instinctively I knew how important it was for me. New friends with strong, clear voices stood around me and gradually I found my way - thank you Laurie...
ReBuilding yourself is a journey - actually more like a pilgrimage... So why not build it into something you enjoy and love? Singing is fabulous exercise - it challenges you and your brain in so many different ways. I can imagine hundreds of tiny, threadlike new pathways being formed in my brain every time I open my mouth!
To be a part of a beautiful collective voice never ceases to fill my heart - and cover me with goose bumps. Alone my singing is pretty ordinary and it's a real challenge (after ABI) to sing in tune, remember the notes and the words and the timing, stand for a couple of hours, clap, dance, smile... I worry every time that I won't be able to do it.
But after the first few bars of music, energy from the whole choir runs through me. I am transcended somewhere special and for those precious hours I am no longer confined by my abilities alone or by my body. Alone, my voice was broken. Yet with some practice and as part of this incredible choir I am whole again - at least for that time. I am grateful for such an amazing gift.
It wasn't always this way. As a young girl I sang with my school choir and even sang one of the solo parts of Silent Night at Christchurch in England. Then my head injury damaged the part of the brain that governs the voice (along with many other parts) and I could never guarantee or control my pitch or tone - even in speech. I was sad to think that I would ever sing again...
My lovely friend Carolyn encouraged me for 2 whole years to join her choir - and when I eventually went, she was away! That first night I was terrified. Another good friend, Dominic, accompanied me and I tried several sections of the choir to try and find where I fit. Eventually I found the alto section. I struggled for weeks to remember the words and to try and learn how to use my voice again. Instinctively I knew how important it was for me. New friends with strong, clear voices stood around me and gradually I found my way - thank you Laurie...
ReBuilding yourself is a journey - actually more like a pilgrimage... So why not build it into something you enjoy and love? Singing is fabulous exercise - it challenges you and your brain in so many different ways. I can imagine hundreds of tiny, threadlike new pathways being formed in my brain every time I open my mouth!
Thursday, May 15, 2008
A Small Miracle
I walk on the beach with my dog and a mug of tea most mornings. This morning my face lit up as I watched a little girl - no more than a baby - picking dandelions and blowing off the seeds. She was totally delighted and sharing every puff and giggle with her young father - who was right there with her. Every single atom of her being was connected to her present moment and her delight. She looked as though she felt totally loved and safe and at peace. I watched her for a little while and imagine my pleasure when, as I eventually walked past her, she engaged me with clear eyes and shared her delight with me and showed me how to blow seeds off a dandelion clock!
For me, those moments of newness and connection are so precious and are glimpses of the peace that we can recreate… ReBuild. Those moments are reminders to me of what I - we all? - forget when we 'grow up'...
Thursday, April 24, 2008
Love of Life...
This morning when I was walking on the beach, the tide was out and the sand was completely washed clean and smooth. It reminded me of a brand new slate waiting for us to write our futures on it. All of us. And if we made a mistake we could start again. Guaranteed! The sun was shining, the sea was sparkling and I felt serene and full - I felt like the world was my oyster. I can't remember when I last felt so 'right' and confident in my life? It's been a while...
I try and 'walk my talk' and pay attention to balancing all the areas of my life and carefully noticing everything I do - especially now so I can write about it! However the price of not paying attention can be high...
After a severe trauma it's as though our very life shuts down. Everything is 'un-automatic' and seems rusted shut. Every step takes effort and when you want to do something simple - like smile at someone and say hi - you have to deliberately make sure that you stretch the corners of your mouth 'up', make your eyes smile and concentrate on forming the word 'Hi' with your lips and make your voice work. It's hard work! Every area of life has to be carefully tended and balanced. It's so tempting to stay home. To cut off from the world. Surely this is just too much effort?
NO! You may feel down and hopeless some days but please, dig deep in your soul, fire up your computer and just type one finger in front of the other. One day you realize that, while you weren't paying attention, life has become playful and joyful again. Just like that! (Well, after a ton of effort!)
A walk on the beach is no longer just a walk. Sure it's still walking on the sand for exercise and air - but now it's so much more too! It's balancing on logs; walking heel to toe and actually feeling like checking out my prints in the sand; pulling pure air deep into my lungs and smiling at the sun. I'm smiling naturally and saying Hi to fellow walkers - very aware that some may be aching or lonely or sad. And another thing - dogs now come up to me and stick their noses in my lap! For months they have avoided me?
Never forget that somehow this precious 'love of life' does come back. Be patient with yourself. Be persistent. It always comes back eventually. And it really is so worth the wait!
I try and 'walk my talk' and pay attention to balancing all the areas of my life and carefully noticing everything I do - especially now so I can write about it! However the price of not paying attention can be high...
After a severe trauma it's as though our very life shuts down. Everything is 'un-automatic' and seems rusted shut. Every step takes effort and when you want to do something simple - like smile at someone and say hi - you have to deliberately make sure that you stretch the corners of your mouth 'up', make your eyes smile and concentrate on forming the word 'Hi' with your lips and make your voice work. It's hard work! Every area of life has to be carefully tended and balanced. It's so tempting to stay home. To cut off from the world. Surely this is just too much effort?
NO! You may feel down and hopeless some days but please, dig deep in your soul, fire up your computer and just type one finger in front of the other. One day you realize that, while you weren't paying attention, life has become playful and joyful again. Just like that! (Well, after a ton of effort!)
A walk on the beach is no longer just a walk. Sure it's still walking on the sand for exercise and air - but now it's so much more too! It's balancing on logs; walking heel to toe and actually feeling like checking out my prints in the sand; pulling pure air deep into my lungs and smiling at the sun. I'm smiling naturally and saying Hi to fellow walkers - very aware that some may be aching or lonely or sad. And another thing - dogs now come up to me and stick their noses in my lap! For months they have avoided me?
Never forget that somehow this precious 'love of life' does come back. Be patient with yourself. Be persistent. It always comes back eventually. And it really is so worth the wait!
Saturday, April 12, 2008
Birthday parties...
A great analogy of how life tends to be for me came to me this morning when I was coaching my 7 year old grandson how to RSVP to a birthday party invitation. My older son was standing in line, waiting for my attention...
I really had an 'ahh' moment (as opposed to an 'aha' moment)...
I carefully read out the phone number for my grandson to dial. Which he did in just the slow and deliberate way you would expect any 7-year-old to do - and, interestingly, at about the same speed as I do... And because my son was watching and waiting, I really 'felt' the length of those extra seconds.
Then I coached him through the call... I reminded him to say "Hi"... and to say who he was... And to explain why he was calling. To say 'thank you for inviting me' and 'yes I will be coming' - and then to ask his questions about timing and directions. It was quite a long and complicated call. At the end he was beaming and so proud that he had every bit of the information he set out to get and he'd handled the call 'just like a grown up'. He was so excited he punched his fist into the air!
For me it was a very timely reminder of the legitimacy of why I am always rushing and why my life often seems like trying to run through thick treacle... It actually can be! Every single little thing that I do requires conscious thought and effort - even something so mundane and obvious as swallowing. If I get distracted, I choke. Every single mouthful of food or drink needs a moment of conscious thought. Can I sip a drink while I'm driving? Only if I am very, very careful...
A chain of events - like saying Hi when you make a phone call, followed by introducing yourself, followed by setting the scene to orient your listener, followed by asking your question - all the time making sure that your listener is still 'with' you. Let alone smiling so that my voice sounds happy... None of that is automatic for me. Still. Over twenty years later - and despite that I 'look' absolutely fine, it's still an effort. I often forget a step, even though I try hard to remind myself. Then I'm very self-conscious of the fact that I sound 'a little off'... It's very easy for me to 'forget' to feel confident...
Everything takes longer and means extra effort. It's not quite the same as it is for 'you'. Which is OK... But as survivors of a brain injury we have to make super-human efforts to 'be normal' and when we try and explain ourselves and we are not heard, we feel minimized. Invisible like our disabilities. Ignored. We would give our right arms (well maybe not!) if things could be easy for us again - as in 'just the same for me' when it really was just the same... (And I say 'we' after speaking to many other survivors about this>) When someone - anyone - tries to explain their world to you, please hear them. To reply with 'it's the same for me' - even if it really is the same, is to dismiss them. They have said it because they want to try to explain their life to you. They want you to understand; they care about what you think; your understanding is valuable to them.
I - and thousands like me - try so hard to keep up with today's really fast pace. It's a constant, huge (overused word, yes, but it fits here...) problem that will be with us for the rest of our lives. Seeing and being part of this special 'RSVP phone call' reminded me to be kind to myself and to give myself a hug - especially when I feel like giving up altogether. That I keep going despite some of the difficulties is really quite an achievement. Underneath the 'normal' veneer - that I work so hard to put up - occasionally is a frustrated and sad woman. With a little more understanding - from both you and from myself - it could be a woman punching the air and cheering yes! Even after something mundane and 'everyday'.
Let's celebrate the fact that we are here at all. Every day...
Yes!
PS Thank you Ann for teaching me how to make a link!
I really had an 'ahh' moment (as opposed to an 'aha' moment)...
I carefully read out the phone number for my grandson to dial. Which he did in just the slow and deliberate way you would expect any 7-year-old to do - and, interestingly, at about the same speed as I do... And because my son was watching and waiting, I really 'felt' the length of those extra seconds.
Then I coached him through the call... I reminded him to say "Hi"... and to say who he was... And to explain why he was calling. To say 'thank you for inviting me' and 'yes I will be coming' - and then to ask his questions about timing and directions. It was quite a long and complicated call. At the end he was beaming and so proud that he had every bit of the information he set out to get and he'd handled the call 'just like a grown up'. He was so excited he punched his fist into the air!
For me it was a very timely reminder of the legitimacy of why I am always rushing and why my life often seems like trying to run through thick treacle... It actually can be! Every single little thing that I do requires conscious thought and effort - even something so mundane and obvious as swallowing. If I get distracted, I choke. Every single mouthful of food or drink needs a moment of conscious thought. Can I sip a drink while I'm driving? Only if I am very, very careful...
A chain of events - like saying Hi when you make a phone call, followed by introducing yourself, followed by setting the scene to orient your listener, followed by asking your question - all the time making sure that your listener is still 'with' you. Let alone smiling so that my voice sounds happy... None of that is automatic for me. Still. Over twenty years later - and despite that I 'look' absolutely fine, it's still an effort. I often forget a step, even though I try hard to remind myself. Then I'm very self-conscious of the fact that I sound 'a little off'... It's very easy for me to 'forget' to feel confident...
Everything takes longer and means extra effort. It's not quite the same as it is for 'you'. Which is OK... But as survivors of a brain injury we have to make super-human efforts to 'be normal' and when we try and explain ourselves and we are not heard, we feel minimized. Invisible like our disabilities. Ignored. We would give our right arms (well maybe not!) if things could be easy for us again - as in 'just the same for me' when it really was just the same... (And I say 'we' after speaking to many other survivors about this>) When someone - anyone - tries to explain their world to you, please hear them. To reply with 'it's the same for me' - even if it really is the same, is to dismiss them. They have said it because they want to try to explain their life to you. They want you to understand; they care about what you think; your understanding is valuable to them.
I - and thousands like me - try so hard to keep up with today's really fast pace. It's a constant, huge (overused word, yes, but it fits here...) problem that will be with us for the rest of our lives. Seeing and being part of this special 'RSVP phone call' reminded me to be kind to myself and to give myself a hug - especially when I feel like giving up altogether. That I keep going despite some of the difficulties is really quite an achievement. Underneath the 'normal' veneer - that I work so hard to put up - occasionally is a frustrated and sad woman. With a little more understanding - from both you and from myself - it could be a woman punching the air and cheering yes! Even after something mundane and 'everyday'.
Let's celebrate the fact that we are here at all. Every day...
Yes!
PS Thank you Ann for teaching me how to make a link!
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