Alright-let’s start this off by being 100% authentic! Is there anyone who does not connect with this comic?
Has life unfolded just exactly as you thought it would? (If so, I want to know your secret!) We don’t even have to talk about life, by the way. How about today? I start each day with a list of what I need and hope to accomplish, and what I expect to happen. In other words, MY plans-the key word there is MY.
Throughout my Purpose-chosen career, I have been honored to walk alongside families and provide even the littlest of support in the toughest of times. During these times, it can be extremely challenging to find or see the BIG WINS. However, I learned a lesson a long time ago, and began sharing that lesson with the volunteers and teams that I worked with- we must change our mindset! We didn’t get the winning decision from the Judge or Jury, maybe we didn’t get the second diagnosis that we prayed for and yet, what I have been shown time and time again is that everything happens for a reason, and there is a bigger game plan than what we might see in front of us.
We must change our perspective and celebrate each and every victory, even those that seem to be small and of no significance! Maybe it’s a project you made a little progress on, maybe you just had an “ahead” day that was better than the day before, or maybe you celebrated a family milestone-those are all wins!
Usually, when we map out our plan for our life, or for the day, — we put the finish line checkered flag at the end, and we think, When I get THERE- I’ll celebrate. When I’ve checked every item off the list, only then do I have a victory. It makes perfect sense if you are expecting a nice, straight line to victory. Please again refer to the comic above for another dose of reality and notice the spacing of the red flags-those are your small wins.
The truth is that we know we are going to encounter our fair share (or sometimes more than fair share) of obstacles between here and the finish line, and we cannot wait until we get “there” to celebrate. Does THERE really exist?
Why are small wins important?
As author John C. Maxwell said, “Small disciplines repeated with consistency every day lead to great achievements gained slowly over time.” This includes disciplines in our attitude and perspective. Are we simply overlooking small wins every day because we are too focused on a bigger victory? Have you ever been so caught up in thinking about when something would end that you ruined the moments you were in? Sadly, I know that I have.
I happen to be a fan of the television drama series, This Is Us. It ended last month in, well…dramatic fashion. One of the quotes I took away from the final episode was from the deceased patriarch, Jack.
Try to appreciate the moments. That’s what we’re doing, just collecting these little moments. And we spend the rest of our lives looking back, trying to remember.
These “moments” are our small wins every day; every day has them. You must invest in the small things and understand that you only have the moment you are in. It is only the combination of moments over time that achieve the big things.
Need two BIG reasons to notice and celebrate the little wins and every victory along your journey?
- It gives you motivation to keep going.
Small wins (which can translate to BIG memories) are found in every day-I don’t know about you, but I cannot wait for tomorrow!
- It makes you feel happy.
Pausing to celebrate any small victory feels good and make you happy. Let’s talk about that word happiness a little more.
According to American Jungian psychoanalyst, and author of seventeen books, Dr. James Hollis-our quest for happiness is not really the focus of our lives.
Instead, we should design our lives around finding meaning and purpose. So, why is happiness mentioned in every single written insight about celebrating small victories?
Hollis adds, “Joy, and happiness, are not goals in themselves, but they are the by-product of those moments when we are doing what is really right for us.”
Friends, Happiness is a by-product! When we are fully engaged in our lives, our confidence runs higher, our actions match our intentions, our love for ourselves grows, and we experience a life lived on Purpose, no matter the straight lines, dips, bumps, and detours along the journey.
ALSnewstoday.com recently shared a blog from Dagmar Munn, and her reflections on living with ALS, and taking time every week for mini celebrations.
Celebrating for me is taking the time, even just a few minutes, to acknowledge completion and bring closure to the time, energy, and emotion I poured into the project. Often, I simply push back in my chair while taking a deep breath and think, “Ta-da!” OK, I imagine confetti falling all around me, too. My mental celebrations are vital to my self-care.
The point here is that knowing that my life has meaning and purpose helps me cope with the physical limitations of ALS.
Take time to notice all your victories, and when you do, no matter how small, pause for 15-30 seconds and really feel it. Applaud yourself. Congratulate yourself-and most of all, take it all in.
-Tonya Hitschmann, Director of Community Programs
Lluvia Alzate was born in Cali, Colombia. She’s the youngest of three children, with a sister 10 years older and a brother 6 years older than her. At just five years old, Lluvia, her siblings, and her mother, Fanny, moved to the United States. “Moving here, we pretty much started with nothing,” Lluvia shared.
Fanny stayed very active and frequently lifted weights. Suddenly, she couldn’t lift the same weights anymore and her arms felt weaker. The family returned to the neurologist for answers. All the while, in summer 2019 Fanny’s speech began to slur.
After learning of her mother’s diagnosis, Lluvia faced many difficult decisions. She decided to cancel her lease to move back home with her mother to help around the house. Lluvia now juggled the role of full-time student and caregiver.
While being an incredible support to her mother, Lluvia continued to pursue her education, taking a couple of college courses every semester. She smiled gleefully as she shared, she would graduate on May 14, 2022, with a degree in business finance. Since her interview, Lluvia has walked the stage and is excited to embark on a new chapter of her life
“Right then and there I also realized why not take advantage of that opportunity to make ALS my platform and shine a light on ALS because this is something that more people need to know about.” – Lluvia
Don’t stop living and challenging yourself. While many people let their illness define them and drop anchor, all of you and my husband Jim is evidenced by your being here at this ALS walk that you have chosen to redefine your life. You are living a life that has purpose and meaning.
Remembering those things, Diane always strived to make sure Jim felt empowered to make his own decisions, even if she wasn’t ready for them. Diane described this time as the hardest thing she’s ever had to experience. As it became more difficult for Jim to breathe on his own, he was admitted into the hospital for seven weeks. The last three of those weeks, Jim was placed on a trach.
Today, Diane still holds on to those precious memories she and Jim made together—from their wedding day to raising their daughter, to football games at their alma mater, to Paris, and even in finding community through ALS.
PRE-GAME PREP: It is important to ask your loved one HOW they want to live, and if you can agree on an overarching goal, your strategy along the way will be a little easier to figure out. Like any winning team, you must know your strengths, and also be keenly aware of what you are up against. 
Think of your Caregiving Team as the Houston Astros or Texas Rangers baseball clubs. Your loved one is the coach – calling the shots. As the primary caregiver, you are the pitcher (1) in charge of the rest of the team! Now think about the people you rely on the most or those on whom you can easily call- family members, close friends, church members. Those individuals are your infielders. (2 – catcher, 3 – first base, 4 – second base, 6 – short stop, 5 – third base). Outfielders are those who may live far away and/or can help only occasionally (7 – left outfielder, 8 – 9 – center outfielders, 10 – right outfielder). Some examples could include family members that live out of town, neighbors, your loved one’s primary care physician, local community resources…and ALS Texas!
Don’t forget the big picture; caregiving can be a long season.
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.
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.”
In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53. In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.” Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.
Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it. Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.” He told me that he wished we would have had that [Hoyer lift} earlier. In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her. She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”
