Voices Of ALS

There are voices in my head, many voices. Some are loud, some whisper and some are constant. Sometimes these voices confuse me other times they scare me. There are times some voices comfort me, when I most need it.

Where do these voices come from? From my mind, from the world around me and now through the small screen in my hand. The one place they don’t come from… my mouth.

For persons living with ALS this is eventually a reality, losing our physical voice. This one function we humans deem essential for life, gone. This in and of itself is agonizingly painful for each of us.

It starts with “what was that”?
Progresses to “can you repeat that”?
Ultimately, “I’m sorry I can’t understand you, please use your device”.

Our voice, the one thing that allows others to know; your thoughts, state of mind and that you are present. So you turn inward, a choice to make, adapt or withdraw.

Now the voices get louder, resonating in my head. Some say “give up, what’s the point”. Others yell “don’t listen, live”! They assault me from every direction, it doesn’t matter if it’s quiet or I’m in a crowd. Some voices come from around me, some encouraging others not so.

Losing our speech, however doesn’t mean losing our voice. Our voice is now mechanical or computerized, but still our voice. It’s also present in the caregiver at your side, your family and in some instances your friends. Your voice is also present in strangers you may never meet. Who are these strangers? Fellow patients, families, advocates… champions of the ALS community!

I know the voices can be deafening at times, know this; who and what you hear is up to you.

Selective hearing is allowed when it’s Your Voice.


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