Now there isn’t a week that my Google alert doesn’t pop up with an effort that managed to regain some function in a patient with spinal cord injury.

From the “cannot be healed” bucket of medicine for more than 5000 years is now to this 60 Minutes story It’s stunning.

The first documented spinal cord injury comes from an Egyptian papyrus dated around 3000 bc. The unknown physician concludes that the cases with motor and sensory loss “cannot be healed.” Until WWII there wasn’t even widespread attempts to rehabilitate paraplegic patients.

Miss you too Joel, and I appreciate it.

Last note: just because I share something on here about spinal cord injury doesn’t mean that it relates to my brother in law. Don’t try to extrapolate.

I said I want to learn everything. I mean everything.

That’s all I have to say.

Would love to connect. Would love to read.

Thank you.

It’s hard to share this publicly.

It’s hard to engage with it. It’s harder not.

I want to know what’s truly possible. What is really the future of this field? What is hope vs false hope? How do you coupe? Get power to live? And what’s practical tips for day to day?

It’s all beyond critical.

I’m not sure that social media can be used for this kind of community building anymore, but we are going to try much more daring things so… why not?

If it devolves to twitter-like meme bs, I’ll just leave this platform too. I can’t handle it. I have zero emotional space for it.

If you are in the space of spinal cord injury as a scientist, health care provider, biotech worker, patient or family member — send me anything and everything. I’d LOVE to connect. No info nugget is too small.

Abgutman@gmail.com and happy to share my WhatsApp in DM.

I’m not going to share specific questions in public related to his rehab and situation, because, again, that’s for him. But again, those in the field know what I’m talking about when we are talking about a complete thoracic injury.

So I am going to use this account and platform exclusively for that purpose. I’m going to share the things I read and I’d love to connect with anyone and everyone who has even a shred of insight into all the complex aspects of navigating this present and future.

Peak twitter for me was around 2018-19 because I met so many interesting people involved in drug policy. They ranged from top experts to those with lived experience to family members and practitioners.

I want to try to recreate that for spinal cord injury.

I need to know everything. It’s a must.

I’ve been working on learning everything humanly possible about spinal cord injury, best quality of life after injury, and the new experimental treatments.

I can’t sleep because I need to read one more study, experiment, and perspective.

And still I have so many questions. We all do.

For me, being across the ocean has never been harder. I think about them 50 seconds of every minute. I swing between rage and sadness.

But no one is willing to give up — on whatever is possible.

This is where social media might help.

I’m not going to ask for money don’t worry.

I want knowledge.

My brother in law is amazing. He is working so hard in rehab. He is keeping better spirits than I would have been able to in the situation.

My sister is a superhero. Parenting, taking care of a her injured husband. Navigating and setting up a new life that involves an all encompassing disability.

One day you are a guy in your 30s, an athletic father of 2 incredible girls that teaches them to swim. The next day you disappear for months of rehab and your return will look very, very different.

And for my sister, his wife, it also changed everything. Literally. It’s hard to grasp.

This kind of injury changes everything.

It is especially difficult because since roughly 3000bc until not that long ago, spinal cord injuries have been considered incurable.

This thing is never going to end. It will change but not end.

That’s scary. Sad. Exhausting.

He fell in a truly freak accident and is now paralyzed from about the belly button down.

The injury is considered complete. If you know, you know.

It has been the hardest few months in the lives of basically every member of my family.

I won’t get into details because that’s for him to do.

“I almost feel like you should have to sit through some misery before feeling the joy,” said @sheilkapadia.bsky.social, the host of the Ringer’s Philly Special.

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