Joyeux Noel

Hi from Julie! We don't have another guest blogger lined up until 2009 so... It gives me a chance to catch up and acknowledge the sheer volume of 'stuff' that happened in 2008... A great website that was just a vague idea in 2007 was started; wonderful people are offering their help; my son has been working flat out... Thank you to Thomas, Marilyn, Rose, Scott, Mahmud, Pablo, Adele, Esmee, Hilary, Daniel and Cobe, Carolyn, Jim and Sheila and all the names I forgot to add here of people whose help is priceless. And thanks Cobe for the very first precious cup of Cobe-tea!

Just before Christmas I saw a movie - Joyeux Noel - which is a true story of something that happened in 1914 in the cold, muddy filth of the World War I trenches: soldiers from Germany, France and Scotland put down their weapons - literally - and celebrated, played soccer and drank coffee together on Christmas Eve/Day. They also buried their dead. Friendships formed but, tragically, the generals (governments?) separated these 'real' soldiers - who were no longer quite so happy to kill each other - and redeployed them.

My dream is for Peace forever among all Nations of the World - a bit lofty but a very real dream because I see ordinary people of all colours and faiths working happily together and I wonder who it is that's pulling them apart again?

Over the holidays I also watched (had to!) several documentaries about the underprivileged, power, greed and violence... And whilst 'ordinary criminals' have been found technically guilty, there is quite a bit of evidence that points towards government involvement. What's really going on here? Again, I can't help but wonder... And pray for strength to 'stay true' - whatever the temptation - for all of us - particularly governments - in the future.

I also watched some great videos from Gregg Braden (thanks Thomas) and the Science of Miracles which are amazing and worth watching (there are 7 parts). Many people are familiar with these ideas but Gregg's explanations seemed beautifully clear to me? - Click Here...

I would like to wish everyone a Successful and Peaceful 2009 and hope that this holiday season was one of family reunion and visits with good friends for you. I look forward to more fabulous guest bloggers in 2009 - and thank you again to this year's guest bloggers for your great posts in 2008.

Guest Blogger -Sarah

Todays guest blogger is Sarah. Thank you so much for sharing your story, Sarah!

Hi everyone,
I'm Sarah and I'm a Childhood Cancer Survivor. My story starts when I was five years old. I went into my parents' room one morning and said: "Mommy, my knee hurts" She said I would be fine and to go back to bed and I did so. My mother thought I just hurt myself on the playground or something. This pain persisted for two weeks and then I started Kindergarden and I was able to forget about the pain for a little bit. However on the second day of school I told my mother: "Mommy, I don't want to go to school tomorrow" Of course this worried my mother, and the next morning I awoke with a fever of 103 and my mother brought me to the ER at Carney Hospital in Brockton, Mass.

There I was diagnosed with osteyomitolytis which is an acute inflammation of the bone marrow. I stayed at that hospital for a week. When I wasn't better by the week's end the doctors did a biposy on my right knee and that's when they found the leukemia cells and on Sepetmber 21st, 1990 I was diagnosed with Acute Lymphoblatic Leukemia.

I could not be treated at Carney so, I was transfered to Floating Hospital for Children in Boston. I stayed at Floating for a week receiving high-dose chemotherapy, Prednisone, and many other medications. There are some bad things I remember from the hospital, and some good things too. My Dad would come to the hospital when he left work and come take my Mom out. Before my Mom left she always bring me Skittles and Starburst. Starbursts, chemo and my stomach all got along just fine, however, with Skittles not so much.
"Look Mommy, rainbow colored throw-up!" I remember going down to surgery to get my catheter put in my chest so I could get chemo, my blood counts looked at and go to school. I Went into remission on October 15th but still needed three years of chemo, blood tests, bone-marrow tests, and spinal taps. For me the scariest part of treatment was the spinal taps. I was not losing my hair or the surgery for the catheter in my chest but those painful needles.

I went back to school, then I wanted to go back to the hospital. The kids at the hospital played with me, the kids at school didn't play with me. No one educated my classmates about cancer because people back then were still stupidly afraid of cancer, I'm sorry if this sounds harsh but, get over it! Cancer exists and if don't talk about it we won't find and the stigmas against patients and survivors will never go away. We should not be afraid of cancer anymore, its almost 2009 we need to get over this cancer-phobia.

I've been in remission for 18 years and I am graduating from college in the spring and I plan to be a hospital psychologist for girls and women with cancer. I often wonder what my life would have been like if I didn't have cancer. I love to draw and I wonder would I have my art abilities if I didn't have cancer? Would I be me if didn't have cancer?

I also had trouble seeing myself as beautiful for a long; I finally accepted my scars when I was 17. One scar is on my right thigh from when I was misdiagnosed. I have one my neck from when my catheter was removed when I was eight and I was half way done with chemo, and her sister scar is on my right breast. I think that one looks like a Phoenix. I had finished taking a shower and I noticed my scars in the mirror and I thought “Damn, these are hot”. My Phoenix-scar made feel beautiful about being a Cancer Survivor but not a woman. I don’t think I felt beautiful as a woman until now. I’ve never had boyfriend, I’ve never been kissed, so I thought I could never be beautiful for anyone; then I realized I had think of myself as beautiful before a man thought of me as beautiful.

I have forgiven cancer for the most part, after all most of problems I face today are from chemo, not leukemia. What I really want to know is why does such a horrible disease have such have such a positive word at the beginning of its name? Cancer is trying to tell us something, I think we should listen to it.

I love this...

Guest blogging is beautiful! I love the idea of getting to know people better - and I love the whole idea of weaving a strong web in interconnected links to support us all... Thanks Baldylocks for being the first and for having this great idea.

I would like to invite someone else to come forward and write a blog for us... Baldylocks has offered to help and any questions or interest can be directed either to her at: http://baldylocks.blogspot.com/ or to me at: julie@ReBuildingYou.com

Step on up!

With love,
Julie

Guest Blogger -Baldylocks

Today I thought I would add a post from a guest blogger. She was diagnosed with Leukemia at 33 in the last two weeks of her university degree. After several rounds of chemotherapy and a bone marrow transplant from her brother, she is now trying to get back to a new normal. You can visit her blog at Baldylocks.com

Da Funk
I've been floundering recently. Almost three years of being ill in bed has taken a huge toll on my body and my psyche. I've gone through a long cycle of fear, anger, hope, and an endless waiting for things to get better. I started out with a very solid belief that I would be fine. But after 3 years in my bed and struggling to get through every day I eventually wondered, will I get better? No doctor would say.

The prednisone and all my other drugs have made me so ill. My strong band of hope that I would see the end of this has grown thinner and thinner until it was only a battered thread.

This whole cancer dealy was only supposed to be a bump in the road of my life. One day I would wistfully look back at it, throw my head back and laugh in a conquering sort of tone. Now I know I will never be the same. I realize it's been said a hundred times over by a hundred different people in a hundred different contexts, but it's new to me. I will never be the same.

Sadness has crept in. Frustration has seeped into every inner corner of my being. With it came listlessness and apathy. Pain, medication, severe sleep and fatigue issues have clouded my brain making it feel like it's stuffed with cotton.

I feel like all the control I've had over my life has been taken away from me. My body has become my betrayer.

I felt a little like putting my head in the oven.


Perfect :) I find being severely at the bottom a real catalyst for change. There is no place to go but up. I've decided to kick this suck hole despondency.

I made a plan. Despite all the things I struggle to get done every day, I am going to come first. I took myself straight to the doctor and to a Cancer Agency counsellor as well as a massage therapist. The doctor made a priority of sorting out my lack of sleep. The Amtitriptoline made me so much worse. I tried it for about 5 days but after a midnight online shopping spree I had no recollection of, I went back to the Dr and stopped taking it. The upside of that is I have been receiving nice little "presents" in the mail for the last two weeks. My GP upped my current sleeping meds which don't give me any trouble. I've also been off my main tormentor (prednisone) for 4 months.

Getting a better sleep has made me feel a bit better which in turn has enabled me to do a little more. I been forcing myself to go twice a week to my arthritic waterfit class. No matter how suckathetic I feel, I go. When a friend asks me to go for a walk on the beach at an unGodly hour, I say, Yes. I was asked to go to a salsa dancing class. I said, Yes, and went but was only able to sit and watch. At least I walked up the stairs. In short I am stretching my boundaries and if I suffer after, at least I know I tried.


I hurt, I feel awful, my body is protesting but I feel hopeful again. I have goals again. I feel like I have some control in my life again. My body is my goal. It's not my betrayer, it is a part of me that has had a hard time and deserves a little compassion.

If I'm not going to save me, who will?

Light The Night Walk for Leukemia

Hello! We walked for little Jobe - and my beautiful friend Rosanne too who was with us - this year and last year. She's a survivor (we're searching high and low for a new term instead of that one? If you have any ideas, we would love to hear them...) Survivors caried white balloons. We had red ones and there were gold balloons to commemorate those who are no longer with us. Events like this really help - not only in the money they raise but just because 'they're there'... I chatted with a father who was there with his wife and 2 other kids while their young daughter was in hospital undergoing her second round of chemotherapy. They were so glad to have somewhere to go where they felt they could go... They just felt too 'shell shocked' to be anywhere else... I was very happy to be there. After the walk - and 5km is a long way when you're still recovering - we partied with a firedancer (above) and music and snacks... Thank you very much to all the generous folks who sponsored us - we really appreciated it. Here are some photos:

Sponsor little Jobe and help support the essential support services...

Please sponsor Christine's walk for Jove - if we all donate even the smallest amount we could help to spread the Light - and Luck... Click Here for Christine's sponsor form. All the assumptions that we naively make about our luck are all relative. If we feel lucky, we feel alive and loved and blessed and just all-round warm and good. We feel wonderful. My daughter-in-law and 3 of my beautiful grandchildren (on the left) are walking in this year's 'Light The Night' walk (for the 4th year running) for leukemia and blood disorders for little Jove (on the right). Ironically, Jove's mom, Iris, walked in Light The Night too - before Jove was even born... My hope is that if we all pitch in and sponsor her - and little Jove - he and hundreds of other precious children like him will be a little bit luckier. Click Here for Christine's sponsor form and more information about the walk - we'll be there and we would love for you to join us too!

Degrees of Luck

Luck is a funny thing... One man's luck is another man's nemesis. If you are in a coma, then 'luck' is to recover consciousness. If you are a well known film star, luck is to land that best-ever role. If you're a teenager without wheels, luck is to win even an old car. If you already have a car, then luck is to win a year's worth of gas and new brakes...

And so on.

The last few weeks have been strange... A brilliant friend of mine was diagnosed years ago with diabetes. He is a gifted stock trader and hopeless entrepreneur. A few years ago one of his legs was black and rotten from the knee down and, despite his doctor's advice to have the leg amputated below the knee, he dived long and hard breathing pure oxygen at the Hyperbaric Oxygen Centre until his leg was pink and healthy again. This last couple of years he's been working long hours and his foot and leg became gangrenous again. He feels lucky that the hospital only had to amputate part of his leg last week and he is learning to walk again already...

NAIG - North American Indigenous Games A day of joy...

We need more joy in this world...

Lives are broken and smashed by trauma - racial, physical, emotional...

This day was a celebration of success...

The North American Indigenous culture was suddenly traumatized - much like an individual who suffers a stroke or serious injury - when the European settlers landed on these shores. As ReBuilding is where my mind is these days, I was obsessing about the similarities between trauma to an individual and trauma to a whole Nation...



This was a day for the First Nations... No mistake. A real celebration. It was also wonderful inspiration to all those who have suffered severe trauma of all kinds...








I've never seen so much hi-fiving in all my life!...







I felt gratitude, being able to applaud strong, young athletes... Taking over my generation's struggles 'to overcome' the past, with new energy and in such positive ways. They do it with apparent ease and grace...






Tribal journeys - which is a fantastic 'Outward Bound' kind of program that takes an active approach in attending to internal problems within the family/culture - had taken place all week with longboats arriving in Cowichan Bay from all over North America and Canada...


I was hoping and praying that the crowds would turn out for the celebrations planned for Sunday. As a Caucasian who is anything but comfortable with her race's history, I want so badly to create new history - a fabulous 'today' - founded on unity and hope and goodwill.

As it happened, thousands of people turned out on this hot, sunny day to cheer the four-and-a-half THOUSAND athletes in the North American Indigenous Games - teams from Alberta and Arizona to New York and Nova Scotia...



I was delighted! The choir that I sing with, One Human Family Gospel Choir, were there, helping to line the route. Here our director Eric (below), is being shaded with a parasol...





Along with the thousands of participants and spectators was a craft fair...

Again and again I saw a lovely blend of tradition, present and future.


This was a mom-and-daughter business making herbal creams in the traditional ways but marketing them in today's way - on the internet...


TheHul'qumi'num group was there promoting education about this land and its First Nations and history.

Representatives from the police force, Canadian Forces and Government offices were recruiting and a great example, to me, of the old and the new in perfect harmony was a beautiful 'today' black silk business-woman's suit with traditional First Nations markings...

The best story of all I discovered on Saturday...

A handful of experienced security men and women have been volunteering their services for First Nations events - including this one...


Supported by local business interests, these guys had been training with First Nations people to provide their Morning Star security for all their events.

They were delighted to show off the beautiful thank you gift that they'd received for all their hard work - and fondly remembered their founder, Lumpy Joe.


To me it was one more example of a community ReBuilding - taking the present and creating the future...

Real and respectful co-operation between people of all cultures.
The feeling of unity and love and an accepting generosity... (I appreciate this, even though the injury to the First Nations people was years before my birth)

I believe the secret of the future lies in unity...

As the great example we were shown here, we can learn from and respect history, seize today and embrace a new future... I pray that the future-builders - our sons and daughters - will be much wiser than our ancestors were and forge the future in peace.

ReBuilders must do the same thing...

I hope the day will come soon when there will be unity in the world: complete harmony, equality and acceptance between men and women of all colours and faiths and histories.

I keep finding examples of this these days - there's a feeling of goodwill and it's spreading!

Whirlwind of action

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...

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!

Aha...

Going into any 'new' area -- in this case for me, business and the internet -- is always littered with booby-traps, buzz words and thick tangled undergrowth. After just a week of picking my way carefully through it, I'm exhausted. It seems so complicated... I work hard and write reams of what I think is great-sounding stuff... Just to find I'm barely passing go.

Every time I catch a glimpse of myself in a mirror I see this zombie-in-the-headlights staring back at me. Forging new pathways for anyone, anytime, is uncomfortable, terrifying, tortuous, humiliating, humbling, sheer bloody hard work...

Wow...

I'd been 'comfortable' for too long... This is (nowhere near, really) what it must be like for my clients. This may be my comfort zone now (counselling, coaching). But when you're in the middle of 'change', it's pure hell. My clients probably see a stunned, strange person staring back at them too when they look into the mirror...

Being out of my comfort zone is like being blindfolded and spun round and around, a hundred times, and then plunged repeatedly into cold water. I really get it now: why it's so important that I try to create a nice comfy, cozy nest at work. Otherwise my clients would never feel safe enough to peek over the covers and take their next, tentative stretch.

A soft, warm blanket and a gentle hug would be welcome right about now...

Thank you Reger. For reminding me.

(And I hope you're listening. Doing your market research...)