The (not so long) goodbye...

I don't post personal stuff to LinkedIn. Some people in my professional world do cross into my personal one. Not everyone one is on the same platform(s), so not all news gets out to friends and colleagues via social networks synchronously. But at times, things happen to you personally that deeply affect your professional life, for better or worse... and now is the time to be honest and inform a broader circle.

For the past 18 or so months, I've been having some strange physical issues. Mainly, difficulty walking, climbing stairs, lifting, running, etc. Muscles twitching... cramping. Things got really bad over this last summer. So, the doctors dug in further this fall and determined...

I have ALS.

Yeah.

No one expects ALS, much like the Python's Spanish Inquisition (Sometimes, grim humor is needed to survive).

Every 90 minutes a person in the USA is diagnosed with amyotrophic lateral sclerosis, also known as ALS or "Lou Gehrig disease". I am one of the ~5000 patients for 2024. It's a neuro-motor disease with no cure and no clear cause because it is so different for so many. ALS is insidious. Unlike Alzheimer's, the mind remains fully aware while the body decays, bit by bit, sometimes in waves, robbing one of simple functionality while you are forced to observe... endure... defy... relent... negotiate... surrender.

This is not something I ever expected. I mean, I'm not that old (55). Frankly, I always thought that genetic heart disease or cancer would get me if I wasn't able to die really old... or maybe some totally odd curling (yes, the sport on ice with the big rocks and brooms), darts (no, I'm not great, but I did enjoy it), or travel accident (there were so many opportunities). This is a LOT to swallow.

But my heart really breaks when it comes to my family. This is not fair for them. They didn't deserve this. Even though this is my diagnosis, it affects everyone around me I love.

We've been grieving... and that's ok. We all should... we should cry and wail... we should curse the universe... we should scream and be angry and sad and confused and hurt and... and everything else. You have permission to not be happy about this.

But then, we need to look ahead. That's not easy because long term the outlook is not good. I know that. I don't like it and don't want to accept it, but that's the reality. There is still more diagnosis work to do, alongside treatment, to determine how aggressive my case really is. But I can... I NEED to look ahead, maybe not far, but far enough to keep going, stay motivated, do the work of the treatments... stay hopeful that I can eek out some decent time in a decent existence for myself and others. I don't know how long my remaining time is... but then who really does? Random things happen at any moment that can alter our lives and those around us forever.

As much as I appreciate all the love and support from all of my family, friends, and colleagues, what I really need is for everyone to support my family... and each other.... in so many ways... now and in the future. Consider donating time, attention, or money to organizations like the ALS Association and ALS Hope Foundation among others. Stop and look within your own lives to see what people and orgs need support for all those you personally know that may be afflicted with any serious medical conditions, terminal or not. Making scientific progress is important... as is compassionate human interaction... a call, a visit, a smile, a hand... needed to care for the mind and spirit of those suffering.

But also consider your own lives and work. Ask the big question. What's most important? What are the priorities for me and those around me... the people I love, the people that care for me? The answer should be easy, but often we keep coming up with the wrong one and find ways to justify it. We need to give each more grace... more space... more room to live and be the best humans we can be, not giving into the temptations of money, of fame, of power. Because very quickly, we could lose power over ourselves... if we had any to begin with. Young men and dying men make terrible philosophers... one doesn't know sh*t and the other doesn't give a sh*t. I can't make sense of any of this, because it really is just part of the way things are. No god, no religion, no piety, no spirituality, no logic or reasoning can, or should, justify it... it is what it is. But I can choose how to confront it, live with it, and move on when the time comes... not with fear, or sadness, or spite... I'm not sure how, yet.

So, from here on out, I'll be dialing back my work, but continuing to work... until it is physically impossible. There are things to do, problems to solve, advice to give, knowledge to pass on. But I hope I can leave something of value behind in what remains of my career and my life. I may drop more thoughts here or I other channels... no pressure, no agenda, no expectations.

Feel free to reach out to me in whatever way you prefer.... I'll love the chance to talk... y'all know how much I like to talk.

Hug your loved ones. Tell them you love them.... then hug them and tell them again. Value and respect your peers. Tell them how much you appreciate them. Hugs and handshakes go a long way. Give yourself a break. Make your life, their lives... not work... the priority. Be compassionate. Be loving. Be grateful.

-Jeff O.

#ALS #alsassociation #alshopefoundation #alssucks #atxlife #atexaswerewolf #thenotsolonggoodbye