Apr 17, 2015 at 10:21 AM

On Living Life Honestly

By Jos� Cofi�o

Who Am I Trying to Fool?

In the first part of my life, I spent much time and energy thinking about what others may think of me: my demeanor, dress, what I said and how I said it. Some among us don’t worry about such things, but most do. That is until a certain age is reached when humans pass from being “weird” to being “eccentric,” from being “opinionated” to being “wise,” from trying to see ourselves through others’ eyes to looking in the mirror and seeing ourselves, and the world at large, as we, and it, honestly are. Alternatively, as in my case, we make this passage when something happens which opens our eyes wider than ever. As I have wrtitten before, I am "living faster" because of ALS.

As I said, I spent many years acting more than living. I came out “late.” I was in my late 20s by the time I was open with friends, family and the world about my sexuality. While the early 90s were different times for accepting Gays, I still regret not being more honest.

ALS Diagnosis -  Time for Tranparency

The lesson of coming out, and of not being truly honest in other ways, was not lost on me when I was diagnosed with ALS. Understand, I was not telling lies and committing frauds, but I filtered much. Once I sat down with my mom and told her that her only remaining immediate family member (my dad and older brother died within a year of each other when I was less than 9 years old), my partner, Ben, and I became totally transparent about our new life facing a disease with no cure and little treatment. We decided to be open about the ups and downs to try to help others overcome their own adversity – medical and otherwise. We wanted to be honest about our selves and our lives.

The Incredible Liberation of Being Honest

As it turns out, living life honestly is incredibly liberating … and yields unexpected benefits.

It is liberating because it allows for the investment of precious energy in things that truly matter, rather than spending it on those that do not. It yields benefits through the support, understanding and care of those who know and love us: Those who should neither be deceived, nor can be superficially impressed.

Let me share a couple of examples.

Living with ALS is not only physically and emotionally debilitating, it is financially so as well. I was recently invited to speak at a conference of the top management at the assisted living community company, Aegis Living. In answer to an audience question, I shared that we could no longer afford to keep my mother in an assisted living facility and that a relative would be taking her in. As an immediate result, an angel presented himself and mom is now living in a better assisted living community than before and our financial burden has been lessened.

In living with ALS openly and as actively as possible using all my “toys” (trekking poles, walker, wheelchair, etc.), we show the world at large that living with the disease is not easy. Sharing our experiences with anyone who will listen allows us to carry the message that opportunities stem even from what can been seen as horrible adversity. It is a gift to be able to speak to groups about this. The responses I get from audience participants transfer the energy away from the disease, and to my ability to keep going in spite of ALS.

Honesty is Real. Really!

Some have said that I am putting on a front. It’s all a façade, they think. Well, clearly, things are, in fact, not great. Some days, challenges seem insurmountable. Yes, there are times when gathering strength and energy to face them takes incredible effort. It requires taking on the issue(s) straight on - honestly, and looking for positive solutions that may yield the outcomes we want. The result is not fake, not an act, not a persona. It is very real energy to help me go onward, to go beyond ALS, even while living with it.

By living honestly, opportunities are manifested, angels appear and we are, in the moment, made better versions of ourselves.

ALS Jose Cofino On Living Life Honestly

José Cofiño is living with ALS, having been diagnosed in 2012. He and his partner, Ben Trust, founded BeyondALS to raise awareness about the disease and raise funds for research. He writes and speaks about overcoming adversity. He may be reached at [email protected] and followed on Twitter and Facebook as BeyondALS.





Posted in Living With ALS.

Apr 22, 2015 Arrow1 Down Reply
Steven Barouh

Jose, I asked Kristin about you just the other day. And Mary asked me about you just the other day as well. So glad to have found this blog.
I hope you and Ben are doing the very best you can under the circumstances you find yourselves. You two are exceptional guys....