2.21.21 Surviving the Worst

As the snow continues to melt away from this insane week in Texas, I welcome the time to reflect on the goodness that was exemplified by many in need of basic essentials themselves. For the record, I was among the fortunate few that maintained electricity and water for most of the storm, only losing water for a couple of days because of a busted pipe under the house. I was checked on and cared for by friends and family who went above and beyond, but we’re not here to talk about me.

The best advice I can give to anyone within the ALS realm, either newly diagnosed or a long time fighter, is to lean in to this community. The love and support that flows from it’s members is unmatched. In the age of social media, we are able to stay connected throughout all of the historical events that seem to have become our new normal. Support groups, online forums, and daily checkups from pALS gives us many ways to love on each other.

ALS is relentless, always taking and disrupting life. Fortunately we live in an era of extremely advanced technology, but how helpful is technology without power? For most with ALS, needs are immediate and not easily rearranged just because of inconveniences like loss of water or electricity. Unsanitary conditions can lead to irreparable infections. Liquid diets through feeding tubes cannot be adjusted due to lack of water. And most terrifying, pALS with trach’s need electricity to power the machine breathing for them.

Again, I’d like to introduce y’all to my friend Gill Garcia. He is quite the force to be reckoned with, and an example of that is Gill underwent trach surgery during this week’s terrible storm. His updates on social media reminded me how supportive and loving this community is when one of it’s own is hurting. I’m happy to share that Gill is home and in good spirits, but here is a post from his time in the hospital.

“Story time. So if it’s not enough that I have a brand new hole in my body , it has been a week of trials and tribulations. If ever there was a perfect storm of a medical nature , this has been it. Everything started about as it should but nothing would have prepared me for this. There is so much physical , mental and emotional challenge. Then mother nature decided to throw her two cents in. You would think that the hospital would be the best place to be. Well Monday morning all hell breaks loose. A pipe decides to bust in the ICU. Evacuation time. Have you ever been ambubagged with a fresh trache? This guy has. Longest two minutes of my life. Crisis averted. Settled in for the day. Welp, six am this morning , awakened to the beautiful sound of the waterfall in the next partition over. Got ambubag? Here we go again. Crisis averted. Three pm, hey guess what? Let’s move you again for shits and giggles. I tell you what. I am ready to be home and take my chances!”

Gill, 2.17.21

The connections and innovative suggestions during this time of extreme needs were awe inspiring. I’d like to introduce you to Chie Smith and her husband “Superman” Steve. Chie was constant in her mission to help everyone around her.

“Update. I just want to thank our heaven sent angels today, our NFL brother and former Dallas Cowboy Kenny Gant and his wife Trevas! This is such a relief for us. So very thankful. Dear friends, I have a generator in route! So very thankful to have this until I can get a permanent one placed. Thank you all for your advice, love and prayers during this time. Please keep an eye on your social media in case someone else may need assistance.

Chie, 2.19.21

The last example of greatness during this time of need that I’d like to share is from ALS Association of Texas. Y’all know I’m a big fan of all things ALS Texas does for it’s families and their latest offering is one of many examples of why I’ll continue supporting this organization.

ALS Association Disaster Relief Fund

Hello ALS Community, 

We are thankful that the worst of the severe winter weather has move on through Texas and hopefully will not return.  We know that many areas of Texas were affected by power outages and the loss of water resources, which can obviously create significant challenges in managing the daily care of someone with ALS.  If you experienced any significant challenges related to this disaster that were and are unsustainable, we are here to help.   

We have access to a disaster relief fund to help you with unplanned expenses as a result of the disaster, including but not limited to: 

  • Purchase of generators or other back-up power sources
  • Plumbing issues (busted pipes, flooding) 
  • Relocation expenses as a result of power outage (hotel, fuel) 
  • Other special equipment you purchased that you would not have purchased outside of the given situation  

We cannot guarantee that we can address every need, but we will try to help as much as resources allow.  

To apply for assistance, please contact the ALS Association of Texas team member in your area (listed below).  

Austin, Central & West TX, El Paso, Greater Houston 
Jennifer Beckett, jennifer@alstexas.org 

San Antonio, RG Valley, Coastal Bend, Laredo 
Linda Quiroz, linda@alstexas.org 

Dallas, Fort Worth, East Texas, Panhandle
Steve Morse, steve@alstexas.org

repping ALS Texas in Perth, Australia

Lean into this community, in good times and bad, they will inspire, love, and collaborate with you to make living with this disease bearable. I’m happy to help make connections!

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