Dear ALS:
May I introduce myself, I am one of your afflicted, and I simply wish you to know that I don’t blame you. You are in fact, not a being, but you do have a presence that is palpable. I don’t believe I am able to forgive you at this point, there are just too many unresolved deep emotions and yes moments of anger. I know I need to, just not there yet.

ALS, you have challenged my beliefs, my resolve and yes my own mind. Incomprehensible is the word that applies to the devastation you cause. I, and everyone you afflict cannot begin to fathom why you must be so insidious. Your grasp on each of us is relentless, indiscriminately clutching at us. Your touch forever altering our life’s course and that of all in our orbit. Sending all of us careening, untethered from what anchors us. Many never finding their footing again, lost in your embrace.

Fear, uncertainty and physical confinement are your tools, breaking our hold on this life of ours. Every time you touch us you do more than take your pound of flesh, you ravish our spirit. When we least expect it, you have once again struck. What now? Our independence, our voice, our breath. We have nothing else to give, why must you be insatiable.

Even so, if I insist on expending what time I have on you, I rob myself of time with my loved ones. So if you must insist on taking without remorse, which is your nature. Then you do you, I will continue to rebuff you by any means and with every ounce of my being. Let this serve as notice, I choose to live in spite of your grasp. I know you will be at my side until the end, and that’s alright. I’m not going to feed you by getting angry, well staying angry I should say, I have better things to do.

Sincerely

The Juan and Only

I am one body in the ALS collective.
I am one voice in a melody of hope.
Hear our song, an unabashed plea for life.
Each verse unique to it’s author.
The chorus a universal call to act.
The bridge, wrought with gaps, incomplete.
Our song, our story, our life…

TJ&O

Written May 2016:

As I sit here and ponder my adventure set for tomorrow, skydiving. Thanks Lilly Garcia Cisneros for prompting me into this. Nathan and a friend of mine are joining me in solidarity. Meg Jankowski Reyes won’t, she said one of us parents needs to be on solid ground … LOL. Anyway, I am sitting here reflecting on my regrets, wishes and desires I come t realize I have never had a bucket list. I have wishes and desires but nothing to say I have to do XYZ before I leave this earth. You may be doubtful, but let me explain…

I was born in Mexico but have grown up in the greatest nation on Earth, the U.S. I met my soulmate in High School. I attempted pre-med and burned out magnificently leading to my proudest moment, enlisting in the Air Force. I was able to practice a very limited form of medicine in the Air Force as an Independent Duty Medical Technician (IDMT) and worked with some of the most talented and dedicated medical staff in the world. This also gave me an opportunity to be a Servant, Servant Leader, Mentor and Friend.

I have traveled a good portion of this earth: U.K., Scotland, Belgium, Luxembourg, France, Spain, Germany, Portugal, Rwanda, Uganda, Bahrain, Dhahran, Poland, Hungary, Bulgaria, Turkey, Italy, Austria, Greece, Amsterdam, Azores, Canary Islands, Gibraltar. Most of these with my wife, some where deployments.

In Bulgaria I was treated as a medical officer and was “forced” to drink during a mid day meal prepared by the Bulgarian Flight Docs mother, I couldn’t refuse. In Hungary I got drunk with an ex Soviet Officer, Pitsy Palinka(sp)! Had the best ever Sangria in Portugal. Treated like family by our Greek landlords and neighbors. Humbled by the strife in Africa but blessed by some of the most genuine and caring people I met there. I haven’t just traveled to these destinations I have lived and worked there.

I have been blessed to be married to my best friend for 27 years (30 yrs together), have an amazing son and was blessed with three beautiful children delivered to us through divine intervention, that’s just the way I see it. I was blessed to have had quite the character as my father in law and I won the preverbial lottery of mother in laws, love and miss you Tina Tyler.

So you see I have no need for a bucket list, its been a charmed life. I wish you the same, God Bless…

Video of my skydiving experience:
https://youtu.be/bfyQw-MkP1Q

Tick…

I’m sorry to say, I do believe you have ALS.

Tock…

We need to tell the kids and our family.

Tick…

My powerchair arrived, I’m so relieved, that last fall was not fun.

Tock…

Hands are done, what’s next?

How do you mark time since diagnosis?

There is no right or wrong answer, I assure you it’s done with many factors by all of us. The tendency is to focus on milestones, such as those above. Major changes in our physical abilities, loss of function and large equipment delivery. Or by the passing of yet another beautiful soul. Time is the one thing that all people have in common, we each mark it in our own way.

With ALS, in more advanced people, it is quietly marked by rhythmic tones from medical devices. These devices, marking time while they generate time for us; ultimate co-dependency. Our eyes follow all movement, marking time with every move of the caregiver dance; which demands more from the soul than the body. A dance comprised of constant vigilance, constant movement and an occasional breath.

The fickleness of time, unfortunately, doesn’t afford the same courtesy to all suffering from ALS. Some get more than others for reasons unknown. So what to do…?

Savor and cherish every minute, every moment, every day. Painful, uneventful, good or bad, a moment is a moment. Take it in, reflect, wait for the next one… Repeat.