Friday, 14 April 2017

The Mask

I have this mask I wear, this falsehood I perpetrate. You can see through it sometimes, especially when I am sick or really tired, completely exhausted. Then the mask grows thin. Every once in a while it falls completely, exposing me for what I really am, for how I really feel. The mask is this facade I put on, driven by my basic personality, a lie of uplift, a lie of happiness, a lie of enjoyment.

Truth be told, mask pulled away, I am completely and utterly destroyed by this disease. I am beyond worn, beyond weak, beyond tired. All that I was is gone, or nearly all of it. All that I could do, I can no longer do. All that I had has been taken from me by ALS. I am a shell, susceptible to even the simplest of attacks, the house made of straw, blown down by the lightest wind.

There are those who will say "focus on what you have, not on what you've lost". I say "trade places, tell me how you do that". I know what I have. It is not that I lack gratitude or cannot gain enjoyment from it. My energy is so low that even those uplifting moments are fleeting, stripped away from me in that simple wind of life's losses. Behind the mask, I bear the sorrows of a thousand cuts. I don't want to hear motivational nonsense from people who haven't even borne a fraction of this disease.

I wear this mask to cover the almost constant feelings of sadness, sorrow, weakness, exhaustion. I wear this mask because I know that the unvarnished truth is too much for even the strongest of people to take. I must be stronger than that. Without this mask, those around me would be unable to withstand the constant onslaught of anguish, the persistent and perpetual pain and suffering. I wear this mask, not for myself directly, but indirectly, so that others can feel comfortable, unaffected by that which affects me so much. If I expose too much, I lose too much.

This mask is getting too heavy. The ever increasing weakness of ALS is affecting even my emotional abilities. My mind is clear, when it is not exhausted. Most of the time, clarity is fleeting, only surviving the first onslaught. Then the mask slips, just a bit. I am compelled by the needs of those around me to put it back on again, to cover the ugly reality, so keep my pain within, keeping them safe from what is really happening back here.

I am tired of it all. Either I put down the mask and things get ugly, or I do less and less and less with those I love, once again sheltering them from the horrid reality of this disease. Want a horrible story? I can tell you one every day. Want a sad song? I can sing one for you every night. I know the truth. Nobody wants the hard part, the horrible story, the sad song. But more and more, I have less and less. What I have, I will try to keep. When it is gone, the mask will fall completely. Then you will know.


  1. I can offer nothing but a virtual hug & empathy. I know how hard it is for folks to understand our disease, especially when there are so many different progressions, so many different ways of dealing, and so many folks who want to say something encouraging or supportive, but don't know what to say.

  2. I feel I should knowledge you're truthful and yes sad blog... No I do not have ALS, so I cannot say I know how you feel... My partner does, and I get to witnesss his decline. little by little, bits by bits.... And yes he does really try to stay upbeat.... Some days really sucks more then other. Your words move me. With them I get glimpses of your despair, anger and yes sadness... And for that, I'm sorry.