A year after my friends Eric and Sonia got married, Sonia's mom died.
It was all quite sudden and terrible; she died from FFI (fatal familial insomnia), a prion disease related to Mad Cow and kind of like a very rapid-onset Alzheimer's, Parkinson's, or Huntington's. FFI, in particular, targets the thalamus, which, among other things, controls your biorhythms, and that’s why FFI causes insomnia as a major feature of the disease. Other symptoms are weight loss, lack of appetite, and rapidly progressive dementia — forgetfulness and confusion at first, leading eventually to inability to walk, talk, or do much of anything. From the time first symptoms appear to death is usually around a year. Average age of onset is around 50. As far as it's known, everyone who has the mutation eventually gets FFI and dies of it.
Sonia's mom's death was mysterious at the time, and it wasn't until almost a year later that they found out the disease had been genetic. By that time, Eric had finished an MS at MIT and was working as a city planner. Sonia had graduated from Harvard Law and was trying to figure out how to wield her newfound power to do something good in the world. Around this time, she decided to get tested for FFI. As I'm sure you've figured out by now, she tested positive.
This is the part where I'd throw my hands up, rage, and eventually resign myself to making the most of the time I have left with the people I love and make some practical adjustments with the knowledge that I wouldn't live past 50 in mind. Eric and Sonia didn't do that.
As you recall, they were a city planner and lawyer. Neither knew anything about biology beyond what they'd learned in high school. Nevertheless, Sonia quit her job and started taking biology classes at MIT and Harvard Extension. Eric immersed himself in contacting and meeting with people working in the field and reading every paper he could. When the papers didn't make sense, he backtracked and read everything he could find until they did. In under a year after Sonia's genetic test results came back, both Eric and Sonia landed jobs at the Center for Human Genetic Research at Mass General Hospital, in a lab that studies Huntington’s disease — also a genetic neurodegenerative disease. Eric is now a computational scientist who's analyzing biological data instead of the transportation data he used to work with. Sonia runs stem cell experiments.
Both have dedicated their lives to trying to find a cure for FFI.
Imagine the uncertainty that comes with starting your own business. Now move that uncertainty into a domain you know next to nothing about and add life-or-death odds to the mix.
Despite that, they're doing it.
Here's a really amazing video that explains a bit about the disease and features Eric and Sonia talking about their situation and what they're working on:
They made the video for their Microryza campaign, which lives here:
With just a little over a month away to finish up, fine-tune, and put my best step forward, I didn’t have time for this self-sabotage crapola and needed to snap out of it, stat! Through all of my spiritual work, deep down, I know that this is just the fearful illusion of my ego, trying to keep me “safe.” In reality, don’t truly believe this crazy-talk deep inside. At first I thought it was fear or failure or fear of rejection. Then, I realized that it was a much deeper fear. All of a sudden, I had an a-ha moment as I heard Marianne Willamson’s voice in my head with her world famous quote:
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
Yes, this absolutely rings true! I was on the brink of psyching myself out into playing small. We all do this. It really is our own light that frightens us the most.
You see, all I’ve ever wanted to do is be a writer. When deciding what to major in college, I shied away from pursuing writing as a career because I didn’t see how I could make a living at it. I chose a different path to pay my bills. But, in more recent years, I have been strongly guided towards it again. It truly feel it is my calling. I’ve amassed a lot of experiences and wisdom through the years in my entrepreneurial and life adventures and through my spiritual studies, which has all helped me tremendously with my own personal growth and transformation. I feel like it is my duty to share this information as I know it can help so many others as well. And, through my blogging, I’ve made so many beautiful connections with readers and affirmed this truth. So, I had to give myself a little Marianne Williamson-esque, “Who are you not to be a writer?”
I share this story with you because I want you to be aware of your own potential greatness! But, also to be aware of your own negative self-talk that will try so hard to snuff out your fire. You are meant to shine, baby! We all are. And by shining your light, you are helping others to do the same.
Try these four steps that I used to put a muzzle on my own negative chatter:
Be the observer. Instead of owning these thoughts as if they came from you — “I won’t win,” “I can’t do it” — take on the role of observer, as if somebody else is saying them to you. This is called separating yourself from your ego. While the ego may have good intentions of keeping us safe, instead it keeps us living in fear and not taking chances or reaching our full potential. That voice is not who we really are!
Notice how silly it can be. As I listened to my ego voice as an observer, I actually giggled out loud. “Where do you come up with this stuff? You aren’t very nice!” I thought to myself. Then, I said, “Thank you for trying to protect me, but I’ve got this.”
Channel your Marianne Williamson. “Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be?” Remember this line always. Seriously, who are you not to be?! Print it out and put it somewhere you can always see it. You are not alone. We all go through this, but you can rise above. You are meant for greatness!
Remember who you really are. For me, I had to remind myself of my deep passion for writing. Also, I am not doing this for me, but I feel a calling to share information to help others. I’m not doing myself or the world any justice by copping out. Same applies to you! The world needs what you have to offer. Don’t hold back!
Finally, after doing all of the above, I sat down with more focus and clarity then I have had in a long time. The words just flowed out of me. I reconnected with my purpose. I might not be good at a lot of things, but writing is definitely my calling.
And, of course, this does not mean I am a shoe-in for the Hay House prize by any means. But, winning or losing this contest is not what matters most. It’s about pushing through personal boundaries. And, at the end of next month, I will have a completed book proposal. Woohoo! That is a big deal for me, regardless of the outcome. I will continue to push towards my dreams, silencing my own negative chatter along the way.
What about you? Can you think of a time when you were talking yourself out of your own greatness? How did you get back on track? Have you ever missed out on an opportunity because of your own inner-critic? We can all learn from each other and would love to hear from you in the comments below!
For more by Dawn Gluskin, click here.
For more on mindfulness, click here.
An autism educator told me recently that she could think of only two reasons a parent wouldn’t tell their child about autism: that they were ashamed of their child or that they thought the child was incompetent.
You know what’s unhelpful? Assumptions like that. If you can’t imagine a parent’s love for their child so great that they would rather absorb all the hurt in the world than have their child hurt, you probably shouldn’t be talking to parents at all.
Every time I’ve read about a parent telling a child about autism it has been The Big Talk. The parent sits the child down and tells them that their strengths and struggles are because of autism. Sometimes they read a book together about autism, then reveal the diagnosis to the child. It sounded Dramatic and possibly Tragic. If I sat my child down for A Talk, he’d think something was wrong.
So I started talking to my autistic friends. Lettuce told me that it should NOT be A Big Talk. Ibby agreed, saying that if it’s big, it feels bad. The information should be in trickles, a little bit of at a time. And, Ibby added, make sure to throw in positive references like, “There’s not enough train movies because there’s not enough Autistics to think of it.” Nick pointed out that we should avoid framing autism as a disease (“You have autism”), and instead use “You’re autistic” in our descriptions. Nick also emphasized that in a family with more than one child, it’s important to tell the child first before the siblings. Ibby suggested that we ask our children if they want to talk to other autistic people, either in person, online, or by typing.
And then it made perfect sense. I’ve already handled important issues with Jack without ever having A Big Talk. When Jack had seizures, I told him, eh, some people have them. I described what his looked like. I told him what usually brings them on. And when we have to go to the hospital, I make it a big adventure to see the ambulances. And he’s fine. No Big Deal.
When some of our friends got married recently under newly-passed marriage equality laws, I said, “Oh, look, Jack! Our friends Xander and Ezekiel just got married.” Jack said, “Two husbands?” I said, “yep” and life went on. It’s a little new information that doesn’t change anything about our two friends. No Big Deal.
When Jack says, “Tell me the story of when you got me” — I absolutely LOVE how he phrases that — I tell him that it took me a long time to get pregnant. I waited, it didn’t happen, and I needed help from the doctor. I don’t tell him the details — he doesn’t need to know all that — but he knows that I had to have shots and medication. No Big Deal.
And finally, I got it. I got it! It’s the same thing! A little new information, but No Big Deal. And then I got absolutely excited about telling him. Especially since I could finally say, “You know how you think model trains should be sold everywhere and for a lot less money? Well… if there were more Autistic people around, they would be.”
So we’ve had some little conversations like this the past few days. My child is listening. No Big Deal.
#alkalinity #alkalinitymovement #7.2 #sevenpointtwo