Journey to NOAHCON 2016:: Meeting the founder

I had numerous brief encounters with NOAH'S founder. While he made himself readily available there were just so many people to be available to so I am very grateful for the moments of meeting I had with him.

I was there relatively early at the start of it all, one the first day of the conference when things were not yet moving at break neck pace for the organisers. As a result I got to grab him for a photograph and set up an interview at his earliest convenience.  It wasn't till the end of the conference at the meet the funders session that I was able to sit with him and have a quick talk.

During our interview we discussed:

- Why you should go to a NOAH Conference.
- The reason behind the creation of the conference.

- It's importance to past, present and future attendees.

- The importance of NOAH attendance to parents of and people with albinism.

I was blessed to be able to get the entire interview on tape.

Some of the advantages to attending as suggested by the founder include:

• People with albinism experiencing life a little bit differently, the conference is a community that recognises and plans events with this in mind.
• There are other people who are going through the same thing and that community can help validate the experience of living with a rare condition.
• Attendees can gain information about the condition.
• Attendees can learn tips and tricks to help navigate the fully sighted world.
• Attendees can gain information about the services and needs of your child with albinism.
• Attendees can gain assurance that your child will grow up to be a fully functional member of society.
• Attendees can learn how to deal with the years of the unknown for your child and for yourself.

I will never be able to bullet point every reason for as the founder himself proclaims, it's hard to explain outside of experiencing it. It is my hope that my encounter with him will help all involved to learn more about the conference and gain any knowledge they might need to help make a decision as to whether they should attend or not.

I will be bold enough to suggest that the answer, more likely than not, is yes.

 My trip to the NOAH Conference 2016 was made possible by sponsorship from: The Writers Association of Grenada, Kallalou Designs, The Office of the Prime Minister and various good Samaritans who insist upon not being named.

My Word of 2017 || #TrustTheProcess

Last year I knew my word of 2016 pretty early in the game, it came at me like a whisper on a wind. This year with my impatient self I looked for my word of 2017 sneakily around every corner. I didn't want to let go of Victory, we had become so close! It had been so very good to me. I didn't want to short change myself either by holding onto feelings that need to be let go.

Eventually I had to calm myself down, you can't trick God after all. I wasn't fooling anybody trying to sneak a look around the corner and into the future.  So I had to constantly be mindful of my impatience, quiet my mind and let my word come to me.

It was not an easy thing to do. Before I knew it December was already almost gone and I still wasn't sure. I began to have conflicting feelings about two words. One I wanted to believe was mine and one I was feeling prodded by but didn't understand why it would expect me to trust it.

Let me explain.

On my road with Victory in 2016 I felt like that other word was journeying with us, I brazenly would venture to say I mastered that other bit already in the only way I could imagine that other word was asking me to use it. So, i decided to do my own thing I suspect, deep in my heart. I figured the other word that i felt I wanted to go with understood me better and where I wanted to go moving forward.

I was in the middle of a tweet in early Janurary, thinking back on the events of the day and how they had enlightened me when one of the suggested hashtags was #TrustTheProcess and I swear it hit me like a ton of bricks.

I would have sworn Trust was asking me to Trust God and I just couldn't understand why after the triumph of running with Victory all throughout 2016. To be honest I was almost insulted, I felt like I learned to dispense some remarkable doses of trust in the face of adversity, being unsure and doubt (read more of that here) so of course I sought out my dictionary to see what on earth I could be missing.

It wasn't till I was in the middle of that tweet though that I got it. I was being too small minded, I wasn't being asked to simply trust God, it was so much more whole of a thing. I was being asked to trust the process, to trust that everything is working together for my good. It is not just enough to know that I know what I am doing but I must Trust that I know what I am doing. I must Trust my ability to be great even while I am already being great. I must pour that faith, after pouring it into my God, back into myself. Trust that everything has led to this, Trust that He orders my steps, Trust that I must make these steps in bold confident strides.

I am tempted to say here we go again because just as I began with Victory I know this will not be a smooth go of things. I have some intimidating big decisions to make this year, decisions that are not going to get smaller as I get older. However I have also been granted an extraordinary sense of calm with this word. A calm I also must trust is real and not just the eye of the storm haha

It's gonna be a big year 2017! Ready for the jump off?! Too bad because it's already a quarter of the way behind us. Can you believe it's taken me a quarter of the year to share this word with you?

Lean with it, rock with it, Trust fall into it!  #TrustTheProcess What's your word of 2017?

Ready. Set. Jump!

Journey to NOAHCON 2016 :: With Hands Just Like Mine.

When she walked in she looked just like I felt. Nervous, scared, excited, confused, anxious. I was a grown up sitting with my hands crossed in my lap. She was being guided around by grown up. She was staring at her fingers, tying them and untying them in front of her.  Her guide led her to me.

She said she was from far away. 
I said me too. 
She said she gets a lot of snow where she comes from 
I said I get none where I come from. 
She is from Canada 
I am from the Caribbean. 

She told me about Canada, the rains and the floods and the snow. With excitement she shared with my and her voice got stronger and braver with every word as 'really?" I said 'waw' I said. She went on with flamboyant hand gestures explaining.

I told her about the Caribbean, the heat and the trees. While I was talking she took up a lock of my hair, held it up to her own and said 'hmmm...just like mine!' I said yes and with a heart so suddenly full I wonder how I remembered how to use words then, I showed her that my hands were like hers too. 

She was so shocked, her jaw dropped open and her little sapphire dress made a wide O around her body as she stared. I was too, I was shocked too but this time, I was a little better at hiding it. 

She squealed with excitement and joy, gave me a huge hug and ran away after changing my life forever. I'll never forget that moment with that child's pure, unbridled affection for a person that looks like you. I understood for the first time after her that...a baby of my own with albinism would not be so bad. It would not be the atrocity the world around me tries so loudly to convince me it would with every negative word they pitch or every unavailable opportunity. It would be a baby...with hands...with ten fingers and toes and joy just like mine. A baby that despite hardship could find joy in the world just like I have found it in the trees, in friendship, in overcoming challenges, in travelling and in faith. Just...a baby, with hands just like mine.

Don't get ahead of yourself their my stance on birth hasn't changed. I'm just saying that for the very first time I realised...no I always knew that everyone was wrong but for the very first time I held just how wrong they were to my chest, felt her heart beat, listened to her laugh and thanked God she existed. All in under a minute.

Lets get back to our story.

This was my first exchange at the NOAH conference. Just a little girl under the age of ten and a grown woman far from home, both never in a situation like this before, both feeling shy and overwhelmed about it. 

On the first night I went to the opening ceremony and the founder told us that we would cry, he told us that we would have a sensory overload. I didn't really believe him.

Then we were dismissed and I stood in the doorway by myself. I'm a very shy girl and I stood there marvelling about how shy I was in a situation I had dreamed about being in for so long. I could hear Mike in my head chastising me when we first got there at the hotel, I had refused to go up to someone I knew from facebook and had to physically stop him from loudly drawing attention to me. 'This is why you're here!' he had said. I ignored him then, as I usually do. Though I did hear him. There I stood hugging my fear tight and watching beautiful people walk right past me. This is why you are here I reminded myself.

People who looked just like me and nothing like me all at once filled the room and emptied it and filling it again. People with afros and dark lipstick and guide dogs and canes and babies, the babies owned the room!

The babies were being thrown into the air and caught. They were discovering every inch of the floor including the corners. They were vulnerable but bold, independent but calculating every step of their environment one step at a time. Their parents were watching in awe as their babies took life by the horns with no fear and we all truly lived in that moment, in that room together.

My eyes caught on a girl with a mane of curly blond hair and dark lipstick and I was struck by how gorgeous she, so struck in fact that I forgot I was staring and only realised it when she walked right up to me and said 'You're beautiful' smiled and walked away. I have been told I am beautiful often so it wasn't that I had heard it for the first time. Parents, tell your children they are amazing, this will set the tone for the rest of their lives and they will never be shocked when someone else says it to them. When she said it, this woman that i had been staring at my heart kicked because it was her and I saying to each other that we are more than skin and difference. We who looked the same but nothing alike.... I needed to sit down. 

Not before I found that facebook friend I had been too shy to say hello to by the way (hey Kadie, hey Ariel, hey Gabrielle)

Then I found my little friend again for a picture. By this time she had made a friend her age and they were wrestling. I mean full blown, belly laughs, rolling on the floor, they were born to meet and share stories bonded. 

I met a girl in a sapphire dress with a generous smile, bright eyes and a big heart and she made me weep. I met a girl who hasn't been alive for long but who has struggled and twirled and been brave and reminded me to be brave by her willingness to do just that very thing. I met a little girl with hands just like mine and I am so glad she said hello to me. 

She was my first little friend at the conference and honestly everything went great from there. She reminded me that at the core of it all, this moment was meant for all of us to meet, to come together and appreciate every thing that makes us different and the same as people with reckless abandon.

This is why we are here.

 To be continued
Check out more from this series here 1 and 2. 
My trip to the NOAH Conference 2016 was made possible by sponsorship from: The Writers Association of Grenada, Kallalou Designs, The Office of the Prime Minister and various good Samaritans who insist upon not being named. 

Journey to NOAHCON 2016 :: Country Mouse & The Keycard

The story of my first key card.

So they give me my key card. Which I had no idea how to use at the time for I had never been handed one before then. We get on the elevator, Mike and I, who had proclaimed himself my bodyguard for the duration of my trip.

I'll tell you a secret, being in that elevator felt like the closest thing to going to Disney.  At first when the doors opened every now and again we ran into pilots who clearly were catching a nap before a flight or people who appeared to be ending business trips. Then the doors would open and there they were, people with the whitest hair I've ever seen outside of a mirror. It didn't happen often, maybe openly once or twice because it was still early and most had yet to arrive. There was also a girl with vibrant lavender and pink hair who I tried not to stare at because I have been on the other end of stares. That hair was a deep good breathe though let me tell you.

When we got up to my floor. Mike, who was a few floors ahead of mine had promised to help me make sure I don't embarrass myself. He failed. Our exchange went as follows. Elevator doors open.

Mike: ok this your floor, you can get out, bye.

Me: um... I don't know what to with this? *holds up key card* 

Mike: oh! Sorry I forgot! (then he laughed at me, rude)

Me: ....

Men in elevator give knowing looks 

Mike: no no she really can't get into her room I have to show her!

Men: more knowing looks.
Mike: No really!

 *Elevator doors close*

Well,  I promptly locked myself out the next time I tried to do it. A lovely lady who's grand-family was from the islands helped me a lot though so another crisis averted! When I got in my room at long last I unpacked and shot a room tour for you awesome people, check it out!

               

Then much to my shock and confusion my hotel room phone rang, that conversation went as follows

Me: Hello???

Mike: hey
Me: MIKE?! How did you get this number???! 

Mike: um....its just the number of your room...

 Me: oh! Waw...

Mike: *insert complaining about stuff like how small his room is cause he think he #baandboushie *

Me: I can't figure out how to charge my phone Wher eare the dang chargin ports?!

Mike:um.....Liz...there are charging ports on all the lamps you know that right?

Me: *checks* OMG! Mike, there are charging ports ON THE LAMP!

Mike: I know. 

Me: That's amazing!

Mike: *unimpressed* I'm going downstairs to explore.

Me: Yes, me too!

To be continued. 

My trip to the NOAH Conference 2016 was made possible by sponsorship from: The Writers Association of Grenada, Kallalou Designs, The Office of the Prime Minister and various good Samaritans who insist upon not being named.

Journey to NOAH CON 2016 : Country Mouse and the Steel City

It's actually taken me this long to be able to write about my NOAHCON 2016 experience. Let's begin from the beginning; the day I woke up in a foreign country as a visually impaired person, about to travel solo for the first time in my life. I must admit, I was really brave up till that point of waking up on the day of my flight. When you get that close to a dream I think that you achieve a weird kind of clarity. It's like standing at the edge of a cliff and realising juuuuust how blue water is, just how big the ocean, just how deep is deep.

Suddenly my excitement was fear. My big opportunity was a brimming panic...but I was going anyway. I had decided this months ago, come what may, I was going anyway, in blind faith I am going anyway.

My mother, aunt and myself took the bus to the airport...when we eventually got it. We couldn't get the bus necessary to take us straight to the airport because we had no change (not me my visually impaired self was so prepared) and when we did get the change the bus was mysteriously delayed. I wasn't bothered, I was going anyway, remember? I'm repeating that because that was my 2016 mantra and truly helped get me there!

When we finally got there my mother and aunt, ever helpful got me to the line, filled out the necessary paperwork so that I wouldn't have eye strain so early in my trip and sent me on my way, thinking they had helped me with all i needed and it was all good.

It was not all good. My family had the best intentions. I appreciated their help so very very much. Especially the not having to deal with eye strain part. Here is the thing, when it's hectic the visually impaired sometimes get forgotten. You are so caught up in making sure they have it that you forget to orient them. So this is what I learned in this moment, don't forget the importance of instructions. Oral instruction, include them in the how not just the done because you wont always be there but I will. 

Oh and if you're visually impaired, appreciate the people who help you, even when they help too much, it's because they don't have any formal training. Remember, we're all figuring this out together. It's up to you to make it clear what are your limits.

The airport of JFK is very large, especially for a small island girl who is visually impaired and never travelled on her own. I spent 50 minutes STRAIGHT running towards my gate after my family left me. 50 minutes trying to figure out what airport signs meant that I was seeing for the first time. Now let me explain, when you are a visually impaired person sometimes their are little things you miss...things that people have a point of reference for that you don't get because you don't grow up seeing it. Airport signs I missed in real life and in movies because I was too busy trying to remember bigger things...like I don't know faces and places?

In retrospect it was not that hard, certainly not as hard as my return trip to New York but that's a story for another day. I read signs that I could see, used my monocular when I could not see them well. Road machines I don't have in my country LONG distances. Thank you JFK for having large print and clearly distinguishable directional signs! Saved my heart!

I got to my gate and pretended to be super calm while wondering if I did it right, if I was at the right gate. I think I only asked the very kind airport staff twice, TWICE as opposed to the two thousand times I wondered in my head if I got it right. Fun fact: one of those airport personnel was from my island, thanks for the love Jesus! I succeed at calm and after sitting at my gate for all of two minutes in anxiousness my plane showed up and I found myself running down to it.

Of course there was the other nightmare of having to ask for help to find my seat in the plane. Which I did despite embarrassing feelings because whatever choice is there? Get it done. Be upfront about the things you need. Ask for help when you have to ask for help.

The air-plane people were kind and helped, I found my seat. Then we sat there because it rained and we had to find an alternative route. Now, I had organised to meet up with my friend Mike, who I kind of think of as my ANNOYING American older cousin with albinism.  You know, that's one cousin who tells you to look over there and then steals your food? Or the one who tells all the cute boys that you don't speak English? We met online years ago, along with most of my friends with albinism. He had not been to the conference in years. He decided to go. We were going to arrive at the airport around the same time so my none American self could figure out how to get to my hotel. (No I could not take an uber but he could so we did, more on that later.) 

Back to me sitting in my tiny but comfortable plane after running to it for the last 50 minutes. Then just sitting there, waiting for it to stop raining and hoping I could find Mike when I got off plane. You know, Mike my visually impaired friend? Who I, the visually impaired girl who had never met this visually impaired friend in person was trying to find in a foreign country for the first time?

He did end up texting me and letting me know that his flight was delayed also ( such an undercover gentlemen when Jesus is on my side ) we ended up getting there minutes apart from each other.  

Fun fact: There was a dinosaur exhibit at the Pittsburgh airport that had me mesmerised for a second before Mike walked me through using the airport train, another thing we do not have where I am from, to find him. I bravely did as I needed to without looking like come-rob-me-bait (a genuine concern of mine) and then blatantly ignored Mike when I found him so I could update my instagram followers because I HAD MADE IT BABY! Your girl was so excited to be alive in Pittsburgh un-robbed and un-deported!

He was getting an uber so I don't think he minded too much.  After letting my mother know I was still alive in a foreign county she promptly asked to speak to Mike to and I quote 'tell him to make sure he take care of much Chile!' Loudly she said this in my ear. I assume in his too for after that there was much 'Yes ma'am...yes ma'am. I will treat her like one of my own.' (He did, see? Undercover gentlemen) 

We got the uber, had a lovely chat with our driver and then I busied my self marvelling at the reality that I made it safely. I was in Pittsburgh. I was going to the 2016 NOAH Conference. It's happening.

When we got to the hotel Mike had a good laugh at me as I approached the revolving doors as though it were a loaded gun  ( they were my first revolving doors don't judge me I've seen every final destination movie ) then taught me the trade secrets (always push from the right) I pushed. I stared. I marvelled. I believed.

I was so worried I'd run into some issue with the hotel due to my tourist self.  It went fine.

To be continued

My trip to the NOAH Conference 2016 was made possible by sponsorship from: The Writers Association of Grenada, Kallalou Designs, The Office of the Prime Minister and various good Samaritans who insist upon not being named.

Big Magic : Book Talk and mini review

Big Magic by Elizabeth Gilbert is one of my favourite books discussing creativity and the writing process. In it Elizabeth Gilbert personifies inspiration and creativity as Big Magic, alive, throbbing and eager to be a co-conspirator in your creative life.

This book spoke to me as only Elizabeth Gilbert can, she puts forth so many experiences both real and fictional. The author explores with you the possibility of moving forward given those circumstances. This is such a minimalistic way of putting it, I am grappling with how to write about Elizabeth Gilbert's writing because it is so philosophical and so soul touching for me.

Before reading Big Magic my creative process was much more burdensome in my eyes. I looked at it as this untouchable sensai who I had to wait on for bread crumbs when I was in the middle of writing.

After Big Magic, I took in the authors notion soundly that my creativity is just as eager to work with me as I am to work with it. It does not tease me, it waits patiently for me to look in it's direction. Sometimes it takes longer for me to find it than we both like and that makes us both frustrated. Big Magic has helped me to consider that content is as eager to be written as I am to write it. My creative content is as eager to be born as I am to birth it.  

The author encourages us to 'Create whatever makes a revolution in your heart.' and how easy it is to forget this. To let fear of not creating something that will be validated by the current world keeps us calling ourselves 'blocked' or 'uninspired' when what we likely really are in afraid. Yeah, I said. Now  I am careful to remember Gilbert's words  '...because in the end, creativity is a gift to the creator not just the audience.' and that 'if you can learn to travel comfortably with your fear, then you'll never be afraid to go anywhere interesting or do anything interesting.'

In my life now many things present themselves to help my creativity. I have at least one creative friend upon whom I can rely to have the conversations that urge me on. I have another who is willing to think big with me and beyond the confines of the regular. The only thing that worries me about creativity right now is that I am not giving it the time it deserves to whisper to me due to the mundane and regular affairs of life.

Before reading Big Magic my biggest fear as it has to do with my creativity was that it would leave me if I did not listen to it exactly when it needed me to and that I would never ever be able to tap into that again. I feared that if I missed some magical moment of inspiration I would never ever find it again.

After reading this book. I realised that inspiration is not some kind of well that can run dry. Creativity and inspiration, it is like rain and rain falls even in the desert. Droughts help us to remember the sweet taste of raindrops on taste buds. Water is life and it does not simply dry up and disappear forever, it is a beautiful resource that constantly renews itself every day. 

We can do our part to nurture creativity even when it is not active. Acknowledging it, feeding it even with thoughts and smiles and inside jokes can go a long way to further the water cycle. Sometimes it's this very thing that can make the conversation between one's self and one's sense of creativity clearer and more easily translated from thought to action.

I loved reading Big Magic, it helped to change the way I think about inspiration, creativity and possibility. The author makes a pronounced point for me, reminding us that 'the creative process may seem magical but it is not magic' it is instead, like every thing else including acts of passion, work. Big Magic reminded me that just because passion is work this fact does not make it less magical. 

I recommend it to all of my creative friends as I felt like she spoke exactly my language. Her final note in the book speaks to my soul every day 'I can guarantee you this: A creative life is an amplified life,  and a hell of a lot more interesting life. Living in this manner, continually and stubbornly bringing forth the jewels that are hidden within you--is a fine art, in and of itself. Because creative living is where Big Magic will always abide' It is one of the few books I would read over and over again because just as I cant stop living it I just can't stop reading that others live it too.