Yes, I’m still here.

It has been a long time since posting to our site.  This has been a particularly hard winter.  Yes, we do live in Colorado, but the meteorologists here say it’s been the coldest in 30 years and we have had snow on the ground for two months.  We’re used to getting a foot dumped on us and it being 57 degrees and sunny the next day when everything melts.  At last, we had a major meltdown the last couple weeks and we can see most of the grass again.  Yet today, it is cold and snowing again.

However, the weather hasn’t been the only tough thing.  We have lost 5 of our patients in the last two months.  Emotionally, it has been a strange time dealing with ALS and my unusual longevity.  Jennifer and I thought and planned on me being dead by now.  Thank the Lord, I am not.  However, I feel a bit like I’m in Purgatory, right now.  Don’t get me wrong, by any means; I feel completely blessed with this slow progression as it has allowed me to enjoy and experience so many things that I thought I was going to miss.

It’s how I imagine outliving your retirement might be.  Now what?  I don’t feel like I’m living up to my potential right now and the motivation factor is running low.  Half of me is in this end of life mode of taking everything in and enjoying all the little things God has set before me; the other half is in the rut most people deal with of day to day life.  It’s the second half of this that is troubling me.  I have this constant reminder (ALS) of how precious life is and yet, because of my slow progression I get caught up in the monotony of life.  I am so used to my own symptoms that my body often compensates to changes before I realize anything has happened.  Then, all it takes is a visit to an ALS patient with a typical progression to bring me back to the reality of the disease.  And they say ALS doesn’t affect the mind.  Ha!  Maybe it’s time to see a counselor.

I still know I am making a difference through Extra Hands and thoroughly enjoy meeting the patients, students and mentors.  These are truly beautiful people and inspirational to me and others they come into contact with.  It is so refreshing to see how selfless and compassionate people can be.  They are really my role models and make me wish I had done a smidgeon of what they are doing during my previous life before ALS.

Overall, I am coping and staying positive as much as possible.  It is just one of those transitional moments when one contemplates the next stage of life.  It is time I take my own advice I have offered on this site:

If you don’t know what your passion is, then make finding it your passion.

I am in the process of reinventing myself and improving my relationships.  How can I be a better husband, father and friend?  What can I do to make my life more meaningful?

Spring will soon be upon us and with it brings new life.  I plan to ride that wave and create a new adventure.  However, I’m not going to wait until then, as it takes some planning and a strong will.  Who will join me?