ALS: Pulling Back The Public Veil

Recently I’ve come across those in the ALS community that feel the ALS public conversation is filled and represented by super-resilient personalities. A quick browse of the major SM Outlets (IG, FB, Twitter etc…), will prove this to be true, somewhat. For the most part these are individuals and families willing to put their life out there; primarily to generate awareness and catalyze treatments. I’m in this very category, my lane is more emotional support through creative writing… I’m ok with this.

Does this truly represent the destructive, unrelenting ALS toll on the body, family and the global ALS community. I have to agree it does NOT, if I must be honest.

So what does?

Let’s pull back the curtain for a moment.
Potential Triggers
The road to diagnosis is extremely frustrating, long and ultimately devastating. This is but the beginning of the assault. So insidious and heterogeneous (different case by case), that one has better luck in Vegas than guessing how progression will happen: fast, moderate, plateau or slow. This simply adds unbearable weight and stress on the person with ALS and the family.

Regardless of the onset, arms, hands, legs, speech, swallowing or breathing, the outcome is still the same, terminal. Let me be blunt, ALS kills everyone that gets it, every single person! The wake of destruction created by ALS is felt by the family for ever; some for generations.

This is what every person with ALS will experience, in no specific order:

Loss of limb function, total loss. You sneeze, you can’t lift a tissue to blow your nose. Walk today, with assistance, to being unable to bear any weight the next day. I believe the term is paralyzed, not a little, but completely.

Breathing, you know that thing we all do without thinking, yeah that disappears also. Some slow, some abruptly, oh and did you know this, the majority of us will die of respiratory failure. ALS literally takes our breath away, our last breath.

Until this happens, we and our families have to endure loss of privacy, modesty and dignity. As much as all those around try to protect our dignity, to the best of their ability…ALS is utterly undignified. Diapers, catheters, feeding tubes, personal accidents. Ok, full transparency… if we live long enough, we will piss and shit ourselves, did you expect a quadriplegic to not poop and pee? Well shit! Some will lose so much muscle tone that they are unable to bear down. Did you know that, probably not.

Do you enjoy food, so do we, ALS takes that also. Prior to loosing the ability to swallow, we experience episodes of choking, not just on food but our own phlegm. Did I mention our diaphragm stops working, essential for pulmonary toiletry. You know…coughing shit up. This in turn leads to weight loss, accentuated by atrophy. Making most of us gaunt, emaciated, skeletal, how’s that for a visual? Not pretty, well ALS, in my opinion, is one of the ugliest diseases.

I will leave you with this.

The person who is diagnosed with ALS, is not the person the family says goodbye to. Not in appearance, perhaps in mind and spirit but not the body. Long gone is every physical attribute that was the loved one. Except the eyes, our eyes will always convey our love for you, my (our) family(s), our world. We can’t live without your love and support, we simply can’t.

This is ALS, but I’ve only scratched the surface; there’s so much more, gross, ugly, uncomfortable, painful. To be honest you can’t handle the truth, you can’t handle ALS, neither can we, but we live in spite of it.

J. Reyes

5 comments

  1. Anna Gomez Grounds · August 8

    Hello,
    Thank you for sharing awareness on this cruel disease. ALS robs the individual of their dignity. They are in a body that no longer functions. Prior to my brothers diagnosis he was healthy, active in many sports and loved to eat. It took over one year for him to be diagnosed. The disease progressed quickly robbing him of his life. It took a toll on family left behind. It is a brutal disease. We can not lose hope. The fight of this brutal disease requires more research. It will not bring my brother back but it may bring hope to someone else. In the end Tony left this world and his eyes told the story of his love for all of us. There is no more suffering and pain where he has gone. Please continue to share your journey.

    Like

  2. Lisa Hodgson · August 9

    Oh my, I hear you. I wish I didn’t understand (maybe I don’t). My husband was diagnosed just over a year ago. We try to live our best life but there is always this dark clothesl

    Like

    • alstexasdad · August 9

      That’s all one can do to be honest. Enjoy something every day.

      J

      Like

  3. Don Nichols Jr. · August 9

    My Souse of 52 years died this past Saturday from ALS and she also had Frontotemporal dementia. She did not show the terrible effects until this past April, having been diagnosed two years ago. It was so hard being her caregiver while she was in hospice at our home. I am thankful she did not have to suffer like other ALS patients and am glad she is now out of pain, but boy, do I ever miss her now.

    Like

    • alstexasdad · August 9

      I’m so sorry for your loss. It is the most painful double edged sword. Cherish the memories.

      J

      Like

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 )

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