Choosing Rehab...

The other day I received this letter from Adam, which he has given me permission to share with you. Since then I have contacted the Brain Injury Society where he lives and found him the names of 3 rehabilitation hospitals that can help him and a hyperbaric oxygen center close to where he lives. I've also blended and reprinted the information that I gathered, while doing this search, to help guide him in his choice - CLICK HERE. I'll keep you posted on new developments and hopefully bring you some photos too.

I hope that his story will help spur you on to find some rehab if you're considering it. These are some steps to help you get started:

1. contact your local Association or Society (cancer, brain injury etc) - you can often find them by Googling them
2. email them and ask for a list of facilities in your area that could help you
3. follow my RBY guide.

I know that when I took these steps, nearly 25 years ago now, I was in pretty bad shape, like Adam. When you're in that place you feel desperate and alone. But with hard work - which I was willing to do and I can see Adam is willing to do too - miracles happen. I pray that when Adam gets out of rehab we can meet up and dance together! Good luck Adam... If you want to wish him luck too, please add your wishes with the 'comment' button. Or EMAIL ME and I will pass on your wishes to him. Thank you!

Hello, My name is Adam Rogers. And I am going to tell you a strange, but very true story. And ask you for some help.

Five years back, Sept. 23, 2003 to be exact, I was in a near fatal motorcycle accident. And I was not speeding or wasted. I do not remember it, or any of the two years prior. So here it sis, in a nutshell.

I was traveling home on my motorcycle to my wife and two children, on highway 1, just outside of Carmel, CA, when I ran into 6, I am told, dead Wild Boar, lying on the highway. Anyway, I was thrown from the motorcycle and sailed through the air. Luckily for me my 30+ years of martial arts training paid off. As I tucked and rolled. The move definitely saved my life. But, as I was thrown ahead of the motorcycle, it caught up to me and hit my head. So I suffered a Traumatic Brain Injury.

I was in a coma for 30 days. And in, what I am told is a semi-coma for five months after. I am at home now, but am disabled. I cannot walk. And not because of loss of limbs. As I am very strong and can stand easily. It is a balance issue. As I have none. My doctor says that the nerves in my ‘core’ are damagd.

It is just very difficult. As I am very strong. As at the time of the accident I was a US amatuer middleweight kickboxing champion.

So now I am now begging you for some help. I want to walk. Don’t get me wrong. I am thankful to be alive. Just, not like this. I can’t even wheel myself in my wheel chair. As when I hit, like I said I tucked and rolled. And I landed on my left shoulder. Breaking my left clavicle. I am at the end of my rope. So I am looking for some live in rehab.

I will tell you my thoughts. As I sit here in my wheel chair I cannot sit forward. I try, but cannot. I am sure this is the problem. I canot even use cane. As I am so physically strong that I throw it. And as I said, I broke my left clavicle, so cannot use my left hand or arm. Can you, will you help me? Adam...

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...

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!

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!

What a wonderful gift. In that moment I saw the whole world through her eyes - I was 'one' with her. With my little girl inside me. With my mom. With my children. With every single one of us.

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'...

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!

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!

On the way - in a zero visibility blizzard...

I've no idea why it feels this way? Except maybe that I have realized how may zillion 'details' need organizing (I'm a perfectionist... bad habit) before I can really move ahead.

I have spent hours researching keywords and spring-cleaning my database... and of course it has to be done RIGHT NOW! Good job I work for myself cos anyone else would just walk out. Yuk!

Aside from that... I have found lots to be inspired by recently. My friend ANN- who is a brilliant and zany writer from Boston - blogged so enthusiastically about blogging (which I had been resisting) - and made it sound like actual fun. Yay! I must find out how to link two blogs together so I can show you what I mean... I would love to write like her when I grow up! The best thing about blogs is that you don't ramble too much like you do in a private diary. In case someone might read it... I can imagine me re-reading this in a year or two and being able to actually understand it. Neat!

Another woman who really inspired me is the wife of one of the soccer players who had their annual awards dinner in my town last night. They gave her and her husband a standing ovation and have formed an association to 'kick MS"... It gave me goose-bumps, standing behind a crowd of several hundred, strong, healthy, applauding men. Wow... I also realized how she has had to struggle at the very time she feels 'un-able'. To find information about MS and its treatment, as well as every other disease, spurs me on to finish my website. I remember well the difference that being part of a therapeutic community felt and I want to publish tons of information in plain language.

I have some grandiose plans to market this website... Including several 'tours' of hospital rehab units and traveling at the same time. Part of me shakes my head and wonders who on earth I think I am that anyone would want to come to my presentations. I haven't even finished my first presentation yet, let alone presented it! On the other hand: why not? I talked to a woman today in North Carolina that I know who I'm hoping will help me build a tour down south.

So funny though that I have had several people phone me to give me feedback about my site rather than leave comments! Is that because many of the people I know don't feel comfortable with the internet? Or do I just notice it because I crave some feedback? Maybe I'm more of an exhibitionist than I thought? One thing's for sure; I wish I had a business partner...

I'm still blown away by the similarities between building a business and rebuilding a life. Of course there is no emotional and physical loss when you're business building. And hopefully it's a much quicker process. But otherwise... I am also very aware of my own physical fragility - and also blown away by the genuine lack of understanding that people have of what that means... I guess I shouldn't be surprised because I still have trouble really realizing it - and many neurological problems are invisible. The people who seem to understand me best are those people who've 'been there'.

So, am I enjoying this journey? You bet! The most amazing thing is the fire within me. It is starting to blaze and crackle for the first time in 23 years. Now I just need to make sure the whole darn house doesn't catch fire and work on keeping it stoked and make sure nothing comes along to douse it.

AND... I must make sure I go for a walk on the beach tomorrow morning and go to my dance class... And pay my bills and do some word exercises on FREE RICE And read all my google alerts...

It's never been more important to try and keep my self running smoothly...

A moment of elation!

I wish I could slow down time. (Yeah, yeah, yeah...) Many ReBuilders (according to my OT, most of us) have a problem with speed and time and getting everything on our lists done. Time management. Our brains scheme and plan at the same rate as they did before they were injured. And like idiots we let our brains tell us what to do!

After twenty years I have still not managed to get it through to my brain that we HAVE to go a bit slower so 'I' can keep up. The result of this, need I say, is boring old fatigue. I always think though, that if I finally 'get there' - wherever 'there' is - it might just mean that 'the scary end' is right round the corner? And that's how I justify being out of sync... On the other hand, maybe I need to apply the same, clean 'parenting' principals that the books say I should try on my kids (rarely do I get that right either...) and tell my brain that 'now we will go slower'. And that's it. No argument. I'm the boss...

But back to the elation bit... I was delighted and very surprised on Friday to learn from my brilliant (I'm allowed to say that cos I'm English!) business coach that I might indeed have a good business idea after all! Yay!! I was just about to throw in the towel. All I need now is the energy to follow through on 'the big plan' (and finish it)... When I read it I can easily see 4 full-time jobs in there!

But... One step - and one stage - at a time. Slow down and breathe... Which is exactly what I want for my clients sometimes? Funny that... I wonder if it's boringly obvious to everyone else? I find it very difficult to take my own advice! Building a business really is similar to ReBuilding your life - in so many 'practical' ways.

Just totally different...

As my sweetheart mum - and our good friend Vahan in the 70's - would say "Take it easy. But take it!"

Have a yellow-daffodils-blowing-in-the-breeze-and-chocolate-filled-Easter... I love this time of year!