On a recent rainy Saturday, I was playing the board game LIFE with my family. I need to also be transparent and share that I am not typically a fan of board games in general. They can sometimes move so slowly and take forever to finish- at least if you want a clear winner. I love sports and competition- and prefer games that have more strategy. I can even play a good “Chickie” or two in a game of Chickenfoot Dominoes and learned to “take my tricks early” in Spades- as taught by my amazing grandparents during summer trips to their house on Lake Altus in Oklahoma.
The board game LIFE can be kind of fun. You can decide if you want to take the path where you might get to have a family. You might even get to pick a house if you have a lucky spin. If you take a little bit longer route (see what I mean about taking a long time to play) you can go to college and have a career that pays more. However, the outcome is still for the most part random-and there is not a real strategy. If you try to play the board game LIFE with some strategy in mind, you will likely end up very frustrated. You are better off just spinning and seeing what happens; enjoying the break from work, the things that don’t have to be done right now, the stressors of life-and focusing on spending treasured time with friends and family.
We can apply this same approach to real life, too. While we can absolutely have a strategy for our life and should indeed make some really important plans, those plans will not work all the time, and circumstances and situations can and do change. Ultimately, we will have to accept that an awful lot in our life is left up to the spin. Getting to that point is much like a board game-it can take a long time and include a lot of frustration along the way.
“You never win any games you don’t play.” – Dallas Mavericks owner Mark Cuban
This quote reminds me that we must always be willing to playing the game, rather than getting frustrated, flipping the board, and quitting! Real life is messy. There can be art in the suffering, lessons learned with each spin, and while it is almost 100% certain that our lives will not go the way we have strategized in our minds, we can still get the win.
Are you a fan of board games? Leave me a note and share some of your favorites!
Tonya Hitschmann, Director of Community Programs
The future is an illusion and only a concept in your head. That is how our minds trick us; we are promised that we’ll get something that we already have. The future begins today, right now-but how do we stay present in the here and now, and invite happiness into our lives? Try these tips as a start!
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.”
This made me think of the phrase “bird’s nest on the ground”. It refers to something being very easy and not at all a challenge-offering at least some advantage with little effort or risk. Do you ever seek the bird’s nest on the ground-especially when it comes to FEAR and uncertainty? While the temporary fix may seem easier in the moment, it often creeps back up again until we put on our shield and truly face FEAR, rise above it and through it, and begin the much brighter journey of courage and peace. We can’t do that alone, and our monthly newsletter shares just some of the ways that you connect with others and face your fears within our ALS Texas community, and with a whole lot of encouragement and support along the way.
17-year-old Jothi Gupta launched the 
Connor Hadley was a pre-teen when his Dad, Collin, was diagnosed with ALS. He since has watched ALS progress and rob his Dad of so much. Now at the age of 17, virtually every day brings a new normal.
“My Dad was diagnosed November 14, 2017. I had just turned 17 as well. From 2017 to August of 2019, I was very involved in my father’s day-to-day caregiving,.” Gabriel Shared. At the time, he was still in high school. “I had to make sure that I got home on time so I could give him is IsoSource feedings. I had early release at school, and got home around 1:00, and would stay with my Dad until about 6:00pm when my Mom got home from work, and then she would take over.”
