I am tired of waiting.  There are all these things happening right now, big things, and it’s frustrating to feel like so many of them are in other people’s control and I am not sure who they are.

Iplex….I can’t stand thinking about it anymore.  All these patients who are waiting to get this drug that might possibly help them.  They have to wait for the FDA, wait for the Review Boards, then wait and see if it does anything.  All this time, they are waiting to see if they get worse and how quickly.

Funding….this one drives me absolutely mad.  If people had any idea how much time, work and money goes into this operation, they would be stunned.  And the fact that we will probably never make any of it back, that’s the tough part.  I work my ass off for the simple fact that I know it helps people.  Ben did too.  How we have managed this long is a mystery and I am not sure how long I can wait for things to get better.

TV….we finally have distribution and they are doing a great job.  But now we have to wait for these various leads to come through.  Don’t they know how important this is?  Don’t the people sitting in their large corner offices understand how many people are waiting for this?  So many people have heard of Lou Gehrig’s Disease, they might even recognize it as “ALS” but they have no idea what it is, what it is about, and that it will probably affect their lives in some way soon.  And what about all those who are so alone out there, wondering if anyone knows what their life looks like, waiting to see if anyone cares and does anything.  Of course people care, but it’s hard to realise that when you are the person living it.

Mass hysteria…..I feel like we are about to see an epidemic.  Is it true that things have to get really really bad before they can get better?  If you look at our economy, that might be an accurate statement.  I am not sure I want to see that happen with ALS, but I feel like it is.  I feel like this thing has to get so out of control for people to react and do something.  As far as I can tell, it is getting out of control and it scares me.

Hope….It’s just not fair that people have to wait for hope.  But from where I sit, it seems like it would be pretty tough to have much if you have ALS.  I am continually amazed by the happy people with this disease.  All I can assume is that they have hope.  Ben did, he always left the door open for it.  It was a skill he had.  I see the same skill in a lot of ALS patients and they are all inspirational.

I guess I need to just shut up and wait, continue doing what I am doing and hope that it will all work out ok.  Things can always be worse I guess, and I have seen many things change in the past few years.  It doesn’t seem like enough, but at least it’s something.  If there is one thing I have learned in this life, it’s that I am forever grateful for all that I have and all that I will have tomorrow.  Because tomorrow could look very different.