Tired to Death of Death


Today is a rough day. A young woman with Rett syndrome passed away yesterday, others are fighting for their lives. Mothers are raging against the beast, doing everything a momma bear CAN do, and still their children are suffering. And the TBI trial results came out.

For those of our most seriously injured servicemen and women, there remains….nothing. I was so hopeful, but hopes can be dashed. There are a lot of “what ifs” left to be answered, but will they be? They used such low dosages, they received patients with other outstanding trauma, but the brain is so, so complicated, there must come a threshold over which nothing can bring them back. On one positive note, Trofinetide did show significant effect on cognitive ability over placebo, so I read it– if you’re not so acutely injured as most, your quality of life is better. But, is that enough? Will there be another trial, one with higher dosages? That remains to be seen, I guess.

It’s a rough day because I think of my friend, Ted. I now know that nothing could have saved him, nothing we know of yet. It goes against my grain to admit, no Hope, not now, not yet. So, I cling to the “maybe one day.” He was a good man, had a wife, a daughter, undoubtedly not unlike the so many that had families, hoping for miracles.

His wife told me how he banged his head, in the worst possible place the docs said. The other man survived because he landed on his legs. A preventable accident, oversight by the pilot and copilot. How stupid can it be to die from falling from a plane that’s on the ground, just because it wasn’t pressurized properly and he opened the hatch and was catapulted to the tarmac in a millisecond. My brave, brave friend, who fought in numerous wars; I can still remember the feel of him all these 20 years. And all those friends and lovers,  wives and parents who have only just memories as these….well I am sick to death of Death today.

I am certain that it is disheartening to Neuren, but still much must’ve been learned from such a long trial and it was….reliable biomarkers were established, there was improvement in cognitive ability in those that survived and were able to function, but I suppose in terms of success/failure it must lean toward the latter and for that I couldn’t be more sorry. But then, there is such a huge difference between TBI and Rett or Fragile X-a brain nearly destroyed vs a brain that needs a little help. Still…well…still.

It reminds us, though, that even Thomas Edison failed many, many times before he made a lightbulb, and Abraham Lincoln, well let’s just say he didn’t win all his elections, just the most important one. So, I will not lose hope for our servicemen and women. Failures are inevitable, but to learn from them is essential.

But, it is a rough day as memories of a laughing, smiling, strong,  brown haired man come back to me. How he really couldn’t spell well at all, and him being the one person in the world where that made him more endearing to this author. And, today, like many days I must relive the “what could have beens” of such a life and what a loss it is to me, to those who loved him, to those he saved, to the country he served.





This entry was posted in Uncategorized. Bookmark the permalink.

2 Responses to Tired to Death of Death

  1. Jack says:

    Thanks for you sharing. As a grandfather for lovely Rett young girl (3.5) I watch your posts closely and take a great comfort from it.
    It is a frustrating day indeed but as you say we need to learn and get better .
    I look forward for the end of 2017 hoping that by then Neuren will be able to lunch its cure to the greatly needed girls.
    Thanks again from Israel.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s