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     It takes a strong will to choose to fight against a terminal illness. It would be so much easier to just give in.  The fact stands blaring in your face:  you will not win.  Resolve says,”I am going to fight this fucker anyway. ” So , we choose to live with ALS.  It is a frame of mind. Rather than lay down and wither away, we choose to live out each day with purpose.  We enjoy every moment that we can.  I can say that it sure beats the alternative. But there is another side of the coin. 

     My wife and I were having a conversation the other day. It really got me to thinking. She made a great observation about the “living with ALS” ideal.  We make it a point to emote a sense of positivity and strength.  But she commented that we should also not hide the fact that we are indeed suffering. So , what spurned this thought?  Well, several things. 

     I can usually be seen with a smile on my face.  Obviously, that relaxes people as they interact with me.  When someone is in the presence of an ill person, there is often a palpable vibe of unease.  That being known, because of my disposition , I often am told ,”You look good. ” Now, I admit, without knowing better , one would not suspect that I am terminally ill.  Many who suffer from ALS have a gaunt look.  Not all, but many.  I guess I have been very fortunate to look mostly the same as I always have.  (a few pounds heavier, maybe ) I believe this tends to give people a false sense of the severity of my state. 

     Next, my wife and I have a fairly decent system in place as far as routines.  Most of us do.  If you intend to thrive at all with this disease, this is vital.  I can be stubborn and picky about how I like certain things done.  My wife, bless her heart, does an incredible job of obliging me.  But, I do my part by adapting to do what is best for both of us.  That means not being too proud to accept help.  Here is how this ties in.  We are efficient and don’t often need help from others, yet.  When others see us work, this too allows them to feel like,”Oh, they have it under control. ” While we do, for the most part , it has not been an easy road and continues to be a great effort.  The drawback is that it sets the precedence for how people respond. 
     The display of strength and resilience.  I take pride in my fight. I want others to see that one can live a fulfilling life in spite of this death sentence.  I am not alone.  There are many who are my inspiration.  The common mantras of “Living with ALS”, “Never give up “, “I have ALS, ALS doesn’t have me” among others, resonate loudly within our community.  No doubt, they are great motivators.  Indicative of the fighting spirit of ALS warriors. 

     So, are we missing an important part of the story?  I think we inadvertently might be , at least somewhat.   While we are putting so much effort into maintaining a positive mindset, we can overlook the expression of the dark truth that is this disease.  We are dying of an insidious beast of a disease.  The smile masks the pain.  It doesn’t matter how good we look or how positive  we are.  Suffering exists.  The conversation brought us to this:  maybe we should not deny the expression of our suffering.  People need to see our pain along with our strength.  If folks only see us up , how do we expect them to understand the gravity of our struggle? 

     In no way am I suggesting that we all delve into a state of despair , but I think we could do better at showing the ugly side of ALS.  There are some out there that do a great job, but more of us can really drive the message out.  There is nothing pretty about ALS.  There is no happy ending.  We are not OK.  We have to face our imminent death.  We have to fear what the disease will do to us.  We have to worry about our loved ones.  They have to suffer with us.  My wife has to watch as I wither away.  My children have to see their father die a little more each day.  They are the ones who witness the pain, frustration, fear and tears.  

     I choose to LIVE with ALS.  I also will not shy away from opening up to the world to show the whole story.  Don’t let our demeanor mislead.  Embrace every aspect of this disease and let everyone see it.