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A Note from Tonya: No Foolin’

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How many times have you heard yourself say, “I know I shouldn’t be doing this, but . . .” followed with an excuse for the bad choice you are about to make?  Everybody has done this, but those who are fooling themselves keep doing it instead of learning from it and moving forward.

We are creatures of habit.  The big question is “are you a creature of good habits or bad habits?”  If you are a creature of bad habits, maybe it’s time to look at how you have been fooling yourself by telling yourself things like, “it’s not so bad” or “I could be doing worse things.”  What do you REALLY, REALLY want in your life?  Are the choices you are making helping you reach your goals, or hindering you?  Maybe you just don’t know.  You are confused about everything these days, and without exploration, that can lead to worse habits.

I have always been a bookworm.  As a child, I participated in every read-a-thon and reading contest offered at school.  I enjoyed the challenge of moving up levels in the accelerated reader activities, and most of all I enjoyed going to new and different places in my head and learning new things-even if it was only solving the latest Nancy Drew mystery.  Not much has changed today.  Sometimes I read as fun escape. Others, I read to really learn, to challenge myself, and attempt to understand all that I am called to bring to this life.  I have a few favorites that I am reading right now. While one is Valerie Bertinelli’s Enough Already-love her!  I have two others on the table and in the lineup waiting to be called in-depending upon the day and my mood.  The quote below is from one of these books.

“I need time for my confusion.” Confusion can be a cue that there’s new territory to be explored or a fresh puzzle to be solved. – Adam Grant, Think Again: The Power of Knowing What You Don’t Know

Take a minute to think of one are area of your life in which you are confused or have been “fooling yourself”. Did you know that it truly is possible to be grateful and in pain at the same time? We have all heard that life can be “bittersweet”, or maybe you’ve also heard that life is “brutiful”. Do we let our confusion about these seemingly contradictory states lead us to creating some bad habits?  The other book on my table is Bittersweet: How Sorrow and Longing Make Us Whole– by Susan Cain.  Below is a wonderful description of this book, and the bittersweet lessons that life brings.

…she (author Susan Cain) employs the same mix of research, storytelling, and memoir to explore why we experience sorrow and longing, and the surprising lessons these states of mind teach us about creativity, compassion, leadership, spirituality, mortality and love.

Bittersweetness is a tendency to states of long­ing, poignancy, and sorrow; an acute aware­ness of passing time; and a curiously piercing joy at the beauty of the world. It recognizes that light and dark, birth and death—bitter and sweet—are forever paired.

If you’ve ever wondered why you like sad music . . .
If you find comfort or inspiration in a rainy day . . .
If you react intensely to music, art, nature, and beauty . . .

Then you probably identify with the bitter­sweet state of mind.

And this quote from Susan Cain’s book, is one of my favorites. “Whatever pain you can’t get rid of, make it your creative offering.” 

What are your creative offerings are you holding on to? Do you have some creative habits right now or ones that you would like to develop?  How can you turn pain in to power, in a bittersweet and brutiful combination of a life lived on Purpose?

  1. Put your fears aside and let your voice be heard. Sing, write, speak, or draw. Do what feels right for your journey. Journaling is an incredible way to write with ease and allow your voice to be heard in a safe place. This is powerfully good habit.
  2. Step outside of your comfort zone. Do new things and make new memories in any way that you can-more memories made= power.
  3. Practice Resilience. Change your perspective-why is this happening FOR me and not TO me?  Owning your response, your reaction to life is your power.
  4. Create a positive environment. What and who are around you? Is it peaceful? It is your space. It is safe? This is power.
  5. Take time each day for self-care and reflection. Start with one minute a day. This is power.

If you aren’t happy with the way things are going in your life, it’s time to stop fooling yourself. Take an honest look at what you might be doing to create bad habits and begin to make the change.  It’s time to create the life you want-No fooling!

-Tonya Hitschmann, Director of Community Programs

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A Note for Tonya: CompARROGANCE – The Comparison Trap

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On a recent Sunday, my friend and pastor shared another one of his many powerful messages.  The focus of this message was centered on living a life where kindness and generosity come naturally. Not only do I follow along in the listening guide and “fill in the blanks” of the printed outline of the message, but every week I also find myself making even more notes in the margins-quotes, words and phrases that stand out, and the parts of the message that most resonate with me. On this day, I wrote the word COMPARROGANCE.

“CompARROGANCE”:  Compare + Arrogance= CompARROGANCE

I think that one of the reasons it caught my attention is that as we find ourselves at the end of yet another year, it is so easy to compare 2021 to 2020, or any other year for that matter. Given the significant events which occurred throughout 2020, it is not surprising we are dealing with a multitude of fears that carried over in to 2021, and we seek to find reassurance wherever we can. We compare our victories and success, and we compare the challenges and struggles. We create a type of measuring stick in our minds, wouldn’t you agree?  Of course, one of the biggest problems with that imaginary measuring stick, is that we can always find a way to compare one thing to another.

Do you ever find yourself comparing yourself to other people? Comparing your life journey to that of someone you know? Of course, you do; you’re human. You and I have lots to learn from other people, and yet there is a world of difference between tracking with others to grow, learn, empathize, or celebrate versus tracking with others to see how we, or our lives stack up. One is at its core healthy, the other, destructive. In the second scenario, comparing to see how our situation stacks up is a trap, and becomes a prison cell that keeps us from achieving our true potential.

Somebody once said that comparison is the thief of joy. In other words, if you’re always comparing yourself to other people, then you’ll never be happy. Comparison with others often leaves us with an empty feeling in the pit of our stomach at the unfairness of life and its gifts. It is perhaps, the most foolish human activity of all time- and yet all of us have been fools.

For our friends who are on a journey with ALS, it can happen quite often. An ALS diagnosis is traumatic for every single family member. It’s not fair; it’s not deserved, and why are many others spared? An ALS diagnosis can come at different ages and at different stages in life, and each ALS experience can look very different in both symptoms of progression and in the timeframe.  All of these could be compared to someone else. Enter COMPARROGANCE.  Comparrogance involves observing, assessing, evaluating differences and it quickly leads to a value judgment that produces one of two outcomes: 1) arrogant superiority, or 2) envious inferiority. Comparisons can make it very difficult for us to empathize with another person’s situation-believing it isn’t as bad as ours; and discounting someone else’s pain.

So how can we learn more humility?  We can learn it from anyone and anywhere, and it’s an open book!  Seriously…

  • Keep a physical notebook, phone, or alternative communication device handy. Whatever your method, take notes when you have lunch with someone, attend an ALS workshop, or listen to a presentation. Glean insights from others.
  • Recognize when you are most susceptible to comparison. You will likely see that the pattern of comparison is most distressing when it closely reflects something that you value, or something that you think others value. Note those values so you can see it in black and white and assess whether you think they are true or not. When and what triggers you most?
  • Practice self-compassion. Your feelings are OK, whatever they are. There is nothing wrong with any emotion! Let’s not add shame, guilt, or criticism to our natural desire to compare. The trick is to see it for what it is, a way that our brain likes to work out how we’re doing. It is not always the truth and not always useful and that is why we need to evaluate it.
  • Consider other perspectives. When we evaluate the truth in our comparisons, remember we are seeing only one perspective. Think of it like the camera on a laptop for a virtual meeting, it only shows the background you choose it to show, you don’t point the camera at the messy desk or messy floor, the dirty clothes pile on the corner. We only see one perspective when we look at the lives of others; we never really know the whole picture. People’s lives can be just as complicated as yours, don’t oversimplify.
  • Take Action. Try using comparison as a guide for what you want to do, achieve, and be. Use it to inspire you towards your goals. Action is how we move forward, simply watching from the outside is not. Remember…Impossible is an opinion. Living your life in the direction that you want to, and on PURPOSE, will make comparison much less important.

-Tonya Hitschmann, Director of Community Programs

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Virtual Groups Are Connecting the ALS Community Like Never Before

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When you or a loved one is diagnosed with ALS, your whole world implodes. You find yourself on a traumatic and isolating journey, having to come to terms with this terrible disease. ALS is a club you never want to be in, but you’re not alone.

It is estimated that there are 1,495 people living with ALS in Texas currently. This does not include the many caregivers, young adults, and children who love someone living with ALS. For all these individuals, the emotional burden is something no one should bear alone.

One of the best ways to cope with the emotional struggle of ALS is by connecting with others who understand what you are going through. Finding those people though can be the hard part, and that is where ALS Texas comes in.

We facilitate vital groups to help connect you with other individuals who are battling this disease. Today, we are connected now more than ever before with the rise of virtual support groups.

Virtual Platforms Extend Our Community

ALS Texas moved to virtual support groups last year for the safety of our ALS community amidst the pandemic. This not only allowed our community to stay connected during a difficult year, but also showed us greater possibilities with our support group reach.

In 2020, 1,633 people joined 160 virtual support groups and online presentations and that number is only growing! In the past, in-person connection groups were not always accessible. Some families did not have the available transportation. Others lived too far away to make the travel worth it. And as the disease progresses, leaving the home becomes more difficult.

Our in-person groups were only centralized by city. Now people can connect from the Panhandle to the Valley at the click of a button. Virtual groups allowed niche groups in our ALS community to come together in ways they hadn’t before. Now EVERYONE on the ALS journey can find a group to meet their needs.

A Group for EVERYONE on the ALS Journey

From those living with ALS to their caregivers, to their children, grandchildren, and everyone in between, every member of every ALS family needs a hand to hold as they walk along the ALS journey.

Our virtual groups are an emotional lifeline for the ALS community. Norman Jones, who was diagnosed with ALS in 2018 shared how these groups have impacted his life. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles.”

Like many ALS families, they benefit from localized ALS Connection Groups that allow anyone affected by ALS to connect with those in their city. Several of those cities also facilitate localized Caregiver Groups. For those who are grieving the loss of a loved one, we host quarterly Bereavement Groups, helping support our community through every step of the ALS journey.

In the last year we have launched SIX new virtual groups with TWO more launching this fall! Each of these groups are geared to serve an emerging need in our community as follows:

Niche Caregiver Groups
Youth and Children Groups
  • Youth Peer Support Group for Ages 8 – 13
  • Young Adult Peer Support Group
Specialty Groups

We are constantly looking for ways to better support our ALS community. If you think there is another type of group that might be helpful to others, we would love to hear your ideas! Visit the contact us page to get started.

The Future of Virtual Groups

ALS Texas is here to support your emotional needs on the ALS journey, but it all starts with you. Those living with ALS and caring for those living with ALS have the most wisdom to pass to others who will experience this disease. Take it from ALS family, Mike & Mary Busch, who shared, “When you get further into the journey, you realize you have valuable experience that you can share with others.”

Director of Community Programs, Tonya Hitschmann is excited to see the growing connection group opportunities for our ALS families.

Connection groups are the way out of isolation island! ALS does not define an individual- the power to choose how life is truly lived comes from within. Every ALS Texas connection group creates an environment to meet new friends – those that understand the ALS journey, and those with common interests. Connection groups open the door to meaningful conversations and relationships, help combat loneliness and depression, and create a space for sharing information, experiences, insight, and encouragement.

It is true that we are better together than we are alone. Join a virtual group today!