I just won the lottery!

Some days change your life in ways you never fully expect or understand until some time has passed and things can be seen with greater clarity.  The day I had my table saw accident and subsequently had a good portion of my middle finger removed by the plastic surgeon is one of those days.  You learn things about yourself and how you view the world and your place in it at times like that.  At least I know I did.  Other days you life changes instantly and you know it right then and there.  No need to wait and ponder the events, no deeper understanding needs to be developed.

Today was one of those days. I won the lottery this morning.

I know, it doesn’t sound real.  Trust me.  I had to pinch myself to make sure I heard the news correctly at first too.  Oh wait – no – not THAT lottery – don’t come asking for money or camping out on our front step pretending to be related to us – and for those of you who are related to us – yeah, even if it were THAT lottery you’d still be SOL.  No I’m talking about a bigger lottery and one that many people would gladly pay enormous sums to win if they could have the opportunity to do things over.

Many of you will know that last year we lost my mom to ALS and FTD – a combination of motor neuron disease that steals away muscle’s ability to grow and thrive until eventually you are left in some state of paralysis and certain respiratory failure, and also a nasty form of brain atrophy that affects an individual’s cognitive and decision making abilities depending on areas affected, robbing them of their former character and personality.  It is a brutal spectrum-type disorder that can also manifest Parkisonian symptoms as well.

What many of you didn’t know is that her condition was inherited and she received mutated genetic material from her father who suffered a similar fate years earlier.  In this genetic mutation’s case, the traits are passed down in an autosomal dominant fashion, meaning that children of an afflicted individual will have a 50/50 chance of having that same affliction.  

This particular genetic mutation is rare.  And from all research to date having the mutation means one will develop the disease spectrum at some point in their lifetime.  No cure.  No known treatment or drugs to help alleviate symptoms.  No idea when it will begin to strike, or in what capacity.  And if you have it, you are at risk of passing it on to your children.

So for me (and my brothers and sister) I either got mom’s corrupted gene, or I got dad’s, which by all accounts and anecdotal family medical history should be clean. 

A 50/50 chance.

A flip of life’s coin.

Not just for me, but also for my son potentially.

It’s been news that I have sat with, lived with, thought about and pondered for a year and a half since we got the news about mom’s positive test results months before she passed away.

I apologize for not being as present during that period of time as maybe I should have been or could have been.  You’ll forgive me if I seemed distracted or distant or if maybe my behavior seemed ‘different’ or ‘odd.’  I didn’t mean to be.  I was dealing with a decision that needed careful thought and deliberate intention.

Genetic testing was offered to all at-risk family members.  I was an early proponent for being tested, as soon as I knew I was at risk, I wanted to know what I might be dealing with.  Not everyone in my family shared my desire for knowledge, and I respect that.  We each have our own road to travel in this lifetime.  What is right for me may not be right for anyone else.

I get that totally, and completely respect the decision not to get tested.  It is a difficult choice for many to try and make.  It isn’t easy navigating the possible outcomes or ramifications of the disease and it’s effect on those around you, on your lifestyle, on your career…

But for me, I HAD to know. I need information in order to make decisions – I trust my intuition only so far – and I can’t plan if I don’t have all the facts.  So after ensuring I knew as much as I possibly could about the science and the disease pathology and similar genetic testing methodologies and in consultation with the Medical Director of Genetics and Metabolism at our largest hospital, I chose to get tested this past spring.

I got my results this morning in person.  Karen and I waiting as the doctor opened the sealed envelope and read the results to himself before turning to us.

“Congratulations! You just won the lottery.”

I am not at risk.  I am not a carrier of the mutated section of genetics.  I did not pass this disease along to Riley…

For the past few months I have been moving forward in life with a gut level sense of the results coming back positive.  Not in an anxious, worrying about the results kind of way, but I think as a means of preparing myself for the possibility of what I might have heard this morning if I had lost the coin toss.  A way of dealing with the possible eventuality should it come to pass.  A way of sorting out the issues for myself and providing a sense of understanding what it all means in the grandest scheme possible.

It was not a waste of my time or my energy to do so.  In fact, it was what I absolutely needed to do to be prepared to face the news one way or the other.  And now I know.

I won the lottery today.  The bank account doesn’t look any different than it did yesterday, but the future looks considerably brighter, and I am far more richer than I was.