What do these words mean to you?

Pretty straight forward, right?

What if this statement had the potential to put your life at risk? Regardless of the events precipitating any loss of life by people of color, it is and continues to be tragic. Imagine a scenario like many others, but now insert a physical limitation preventing someone from complying with authorities.

This is precisely what Maceo is referring to in the image above. When I first saw this posted on Twitter, I exclaimed, “ Oh my God, thank you for sharing this troubling reality!”. However the more it simmered in my mind, I began to ask, “WTF is wrong with this world?”.

How is it that a person with an incurable, terminal condition, ALS, has to be concerned with such an ugly reality. I often say, “No one gets ALS until they get it”. Well Maceo, until I read your statement, I didn’t get it.

To have ALS is bad enough. To have treatments for ALS within reach, but denied is criminal.
But having ALS raise your risk of racially motivated harm is sickening.

Why, why, why…I Just Can’t!

TJ&O

ALS Life…

The Tongue 👅.

You can choose to hold it, most don’t to their detriment.

You can bite it, again many fail to do this with adverse effects.

It is a muscle fundamentally. It aids in speech, chewing, swallowing and digestion.

It is a voluntary muscle. What disease effects voluntary muscles? ALS!

Yes this dreadful disease takes your ability to use your tongue effectively. This effects one’s ability to do a number of things.

-Manipulate food away from the back of your throat, causing choking episodes.

-The tongue can experience fasciculations, yes! Those pesky, annoying muscle twitches. It twitches like all the time. Straight out of a sci-fi movie, it looks like it has a life of it’s own.

-Speech is affected; as your tongue slowly loses conscious control your speech becomes slurred, indistinguishable.
This is compounded by the fact that the soft palate is affected by ALS also, altering the voice.

As all the above progress our voices are lost, we lose our ability to eat, swallow and are at increased risk of choking.

Just another random thing ALS takes that most folks aren’t aware of.

The tongue; a gift, a curse, a tool or a weapon. Regardless, when it fails to function, your life changes.

WTF are families or caregivers of a pALS to do, when the professionals hired to care for said pALS, abandon their post?

Really! So you’re telling me an untrained, unpaid lay-person has more integrity than the effing professional! This should be a testament to the sheer magnitude, workload, intensity and dedication required of a cALS. Does this not resonate loudly as to the need for the general public to fucking get a clue about ALS.

Seriously a fellow pALS who is trached was abandoned by their nurse. No warning, no notification to the agency, just up and left. As a previous health care professional, this is unfathomable to me. How can we as a terminal community overcome the sheer ignorance and disregard for our lives. Failed by government three letter agencies and apparently our care is too much for a professional; what next!

To the pALS it happened to, I’m so sorry you had to experience this. It is utterly unacceptable. I pray this never happens again, unfortunately I believe it is more prevalent than we realize.

We must, as a society do better, we simply must.