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!

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!

Saturday, April 5, 2008

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...