M's writing

[avnl]

M has been writing over the last 5 years. He recently had a piece accepted in Intima, a journal of narrative medicine. I thought people would enjoy his perspective on his PLS. He is not a forum person, so it may be the only time you here from him as opposed to about him.
Anna

Night Trip ? Intima

 

[Tractor Boy]

Wow, just WOW! He describes my nightly activity to the tee...but I need to get up 4-5 times a night. His article hits soooooo close to my reality.

Good read...thanks for sharing. TB

 

[Atsugi]

Thanks, Anna. Powerful writing. Everybody should read that.
--Mike

 

[cheerleader]

Powerful glimpse into his thoughts! Sad, but courageous. Thanks for sharing. His references to beating the 16 year old running, and his current state were so touching. TG for good memories!

 

[Diane H]

Powerful article from a guy who is intentionally allowing his disease to win. Simply using a urinal would have shortened the article to one paragraph, his struggle to three minutes, and the risk of injury from high to zero. He says a urinal would hurt his self esteem. How much self esteem does he have when he has to explain yet another laceration or broken bone to the ER staff as being a result of refusing to use the simplest piece of medical equipment? I have no sympathy or tolerance for people who endanger themselves and put an additional burden of worry on their family because they stubbornly and stupidly and arrogantly refuse to use the equipment needed for safety. He is giving in to the disease, not fighting it.

 

[Tractor Boy]

Diane H, I totally disagree with your perspective on M's article. Some of us need to progress through our journeys at our own pace, no one else's. This does not mean we are stubborn or stupid. We are not professionals at dealing with this horrible situation. I feel your comments to be degrading and way off base.

 

[lgelb]

I wasn't going to weigh in here, but TB, to call someone's comments "degrading" surely has as high a bar as to call actions "stupid."

Undeniably, Michael is risking falls and UTIs with the behavior he mentions and that has and will affect Anna and whatever other family exists. He may keep driving longer than is safe. He's ten years in, not diagnosed yesterday. I've known pedestrians and drivers who died from others' stupidity, so that resonates.

As Diane points out, it's not a badge of honor to commit other peoples' lives to the risks you choose for yourself. I believe we discussed that fact recently in a trache thread as well.

Diane isn't saying that Michael should roll over and do whatever Anna wants, or what Diane would do. It doesn't take "professionalism," TB, to try to minimize the impact of your disease on your family. It just takes empathy. Many PALS lose some. This piece of writing does not suggest that as a rationale; though I could dissect the one provided, it's not my place.

Doesn't everyone cut and paste the "don't fall" portion of Max's credo here? Is that "degrading" to those who seemingly ignore it and do things that make it more likely they will fall? No, it is not.

Diane is saying what I suspect several of us are thinking. I'm not in Anna's position and won't prescribe for her and Michael. But, undeniably, the point of view he expresses is one, that as a former CALS, makes my heart sink. I wish you both well, Anna.

Best,
Laurie