This is a term that for general purposes we use to describe appropriate interactions/actions with and to others. Modesty is frequently associated with dignity, when discussed. We are all familiar with it’s use under this premise. I would like to share another aspect of this term as it applies to ALS, end of life.

Although this dignity or dignified end of life concept has been present throughout all human history, it continues to be taboo. My question is, Why?

Death is very much an integral aspect of life itself. Yet as a society we shy away from this very real and unavoidable eventuality. Fear, narcissism, ego and many other factors feed and add life to the taboo public perception.

Recently the ALS community experienced the loss of two incredible human beings, who defined their dignity. I am not here to discuss anything other than the strength and courage needed to make such a truly personal and difficult decision.

Take a moment to reflect on the many hours of reflection, conversations with loved ones and the tears shed leading to this. Just imagine.

Given that ALS takes everything, dignity is totally dependent on others. I ask that you also take to heart the amount of love and respect for the individual by the family. That is true and selfless love, which is essential for dignity.

I won’t even venture to say “ I can imagine “ the discussions had. Ultimately each person defines their dignity and we who remain cherish their lives and memories, with DIGNITY.

J. Reyes

We live surrounded, orbited by those that come into our lives. Most on the periphery, some fly close, even less shift our trajectory. But a few collide with us, forever changing us. Their impact leaving a lasting and enduring impression. When they leave us it hurts, yet we carry on, we must.

Recently we, our ALS family, lost two such persons. Each having left an incredible void in their families lives. Both fierce advocates, more importantly fierce mother’s . Both willing to fight not just for themselves, but for everyone afflicted by ALS.

Sandy, you altered the ALS research landscape by demanding and implementing accountability. Allowing those living with and affected by ALS to contribute directly to the impenetrable research machine. Your voice and presence never diminished by your failing body; when you spoke we hung on to every labored word of yours.

Taya, we met over zoom, and your energy and smile won us over. As we came to know you it soon became glaringly obvious, you were a force of nature. A fierce ALS advocate in your own right in Canada, and an avid fan of the Toronto Blue Jays. We were always in awe of your efforts and your candid perspectives.

I know my life is better for having met both of you. So with broken hearts and broken bodies we keep fighting. Our hearts continue beating with a broken cadence, having lost two resounding notes in our ALS song.

J Reyes