Monday, August 1, 2016

August = ALS month

This day always reminds me of this day 5 years ago.  I wake up with anxiety just knowing it's August 1st.  You see this day 5 years ago, the first of a few doctors told Steve he had ALS.  No one of course believed this doctor as the appointment went like this.

"What's going on with you?" The doctor asks Steve.

Steve, "I have some weakness that started in my right hand, and has gone to my left, and now I've started falling.  I've been going to the doctor for any one of these symptoms for over a year, and there's never been any answers."

"Sounds like you have ALS, you should schedule an appointment with a specialist." The doctor replied with no emotion.

"What is ALS?" Remember 5 years ago when no one knew what it was.

"Lou Gehrig's disease, here's some doctor recommendations."  That was it.

This was the 3rd doctor Steve had seen in just the short 4 months we had been dating, and despite this doctors poor diagnosing skills, I had that sinking feeling in my stomach he could be right.  This was the first time Steve asked me what I would do if he had ALS.  I remember that night he cooked dinner, and through tears told me that he spent the day researching and it would be awful, that he couldn't ask me to stay.  I told him, not to get ahead of himself.  I told him to stop researching, stop expecting us to have all the answers, and just wait and see, and that I didn't have any plans on leaving.

Of course, Steve my planning obsessed boopy, didn't stop planning.  In fact he went ring shopping with his mom the very next day.   August has always been "my month" I'm a leo, so it's not just one day in this month that's my birthday, it's my birthday month.  Later becoming the month we got engaged and immediately started planning a wedding for just 2 months away.  It's almost no surprise to me that in 2014 it became, ALS month; due to the ice bucket challenge.

ALS being the theme of this month is almost comforting these days.  To know people actually know what ALS is, and to see people care enough about ALS patients they decided to participate in a challenge that went viral.  It was all people talked about the entire month of August 2014, it was surreal, I mean we had people in the community become famous essentially because of an ALS diagnosis.

The ice bucket challenge was an amazing blessing to our community, that we've all been trying to hold onto for dear life.  Of course, the results of the challenge are varying, but the fact that this disease was in the headlines, was hope.  I had a glimmer of, "Steve could get cured."

Do I have that hope today?  No.  I'll be honest, I don't, with all that I've witnessed Steve's body go through, and the political BS in getting clinical trials funded and convincing the FDA for a right to try something proving to add some life, the reality is too clear.

HOWEVER, I think if we could find a way to replicate the money coming in that we did in 2014, to the right source (those wondering that would be ALS TDI) it could happen sooner rather than later.  I believe August 2014 was the best thing that ever happened in the ALS community, and I hope every August generates that kind of money.

Neither Steve & I will be dumping any water on our heads this August, and we plead with all of our followers not to either.  To be honest, water is too scarce for too many people, for us to feel okay with it being used for that.  HOWEVER, we have some things up our sleeves for this month and we will be reminding you all of how important donations are.

Bernie Sanders taught a pretty incredible lesson this election season.  You don't need the big money donations, you need donations in numbers.  Between all of our different social media outlets Steve & I have, we have over 30,000 people following us.  Some of those numbers could be duplicates, but stay with me.  If each of those 30,000 just donated $15 we could raise $450,000!  That is how we fund a cure.  Change that to $20 & we are talking $600,000. That's some serious money from one ALS patients following. Now take that and multiply it by the thousands of ALS patients world wide, and together we can again make a huge difference in this community.

So with our reality being ALS everyday, having others talking about it this month, will be nice. Maybe a nice break from all the sources trying to divide us against each other, and we will see everyone come together.  Because like I keep saying, we are in this together.

1 comment:

  1. Beautiful post, Hope. Like you say, the 2014 ALS Ice Bucket Challenge is pretty surreal in retrospect, a magical time for awareness really. But like you also told Steve 5 years ago, "let's just wait and see" what August 2016 will do for #ALSawareness. Thanks for the inspiration, tell Steve hi, and I already miss you guys a lot!