Two years. That’s how long we have been living an ALS Life. Never in a million years did I imagine that a horrible, terminal disease would find its way to my family. After all, haven’t the Big He and I been through enough with the loss of the babies and the Little He’s early arrival. There are no passes or limits to the burdens we have here on Earth. In the two years since the diagnosis, I have often wondered how in the hell do you experience this level of devastation and not go bat $hit crazy. What is that something that some people seem to have to help them walk through the Valley.
The Big He and I have managed most of our difficult situations through the liberal use of inappropriate humor. Like, REALLY INAPPROPRIATE humor. Even some of the saltiest veterans have cringed at some of the things that have come out of our mouths. I have had people around us tell us how strong we are. I am not sure that strong is the right word.
I think a better word for those folks that seem to weather the storms better than others is RESILIENT. Resilience is not something you are born with it is something that can be learned. It is a skill you develop. It is the capacity to cope with stress and adversity. I look at my past and I can think of people in my life that have shown me what this means. I have learned from them. I have also found a group of people (our battle buddies) that should have their pictures in the dictionary next to the word resilient. Since the Big He’s diagnosis I have connected with a group of caregivers who are the wives, husbands, sister’s and brothers, mother’s and father’s to veterans. Not just veterans with ALS, but yes there are some, but caregivers to disabled veterans with wounds both visible and not visible. Veterans who have had catastrophic injuries in recent wars and those veterans that have dealt with cancer, strokes and other devastating illnesses. This is a subgroup of caregivers in America today. The amazing, resilient people are every age. They are men and women who do remarkable things. It is these people, the caregiver’s to veterans, that I now look to for guidance as well as look at in awe regarding living the life that chose us as resilient. So how do they do it? Their resilience comes not from staying strong every minute of every day. No, it comes from experiencing the difficult and trying times. It comes from being vulnerable and wondering if you are doing everything you can. It builds even while you are soaking in a tub with a bath bomb, crying and wonder WTH. But these amazing people don’t live in the difficult or vulnerable experiences. They move on. They recover and get back to the job at hand. Ok, they also have very inappropriate and twisted sense of humor, but that’s probably what drew me to them in the first place because their coping mechanism was the same as mine and the Big He’s.
As we move deeper into the progression of Alpha Lima Sierra, both the Big He and I will need to hone our resilience skill. I know that when we get down, we can count on our battle buddies to let us have our moment but then tell us to dry our tears and get our butt’s up and get back to business.
TOUGHNESS IS IN THE SOUL AND SPIRIT, NOT IN MUSCLES -Alex Carras
All my love,
The She
The Big He’s update: He is still receiving the infusions of Radicava. Are they helping, not sure but we can say they are not hurting. The Big He is still going strong and fighting this damn disease every step of the way, even if his ability to take steps on his own are coming to an end. He is a fighter. He is RESILIENT.
Thinking of you guys everyday. Miss working with the Big He! I know that you guys find your strength in God. Praying and sending my love.
Sending you—- my sweet little cousin, my love. You are strong and mighty. God knows you are doing everything you can to help Tom.
Life with The Big He is definitely not for the weak and everyday is a new trial. So cry if you have to, yell, and/or curse At ALS but remember to get back up and continue to make awesome memories and while you are doing that WE will take over with the yelling, crying, and cursing; with every inappropriate manner possible.
Love ya
Remember also that every day you have to walk through with faith and grace. Everyday is a new day. You do what you have to do to get through it, whatever that may be. You are WARRIORS!! Even if it doesn’t feel like that all of the time. Fighting
back is your resilience!!There are prayers and love coming your way 24 hours a day. We love you all!! Stay Strong!!
The Big He can be inappropriate? Never noticed. He’s pure sweetness around us. 😏
There aren’t that many of us who can say “been there, done that”. I pray God will continue to give you strength and peace. I prayed for a miracle, my husband prayed for courage to get through it. My answer was “no”, his answer was “yes”. He now has a beautiful eternal life!
May God continue to Bless you.
Semper Fi
A former Marine buddy of mine has ALS and is having a very difficult time with the VA in Salem, Va. Could you possibly contact them and provide some advice?
Absolutely!
Greetings from another PALS vet! I’m also two years post-diagnosis but was 69 when diagnosed. My progression is so slow that it is sometimes hard to measure. You are ever so right about getting checked early on, so that “treatment”, such as it is, can be started early.
Know that my prayers are definitely with your family.
Fr. John
Thank you Father John. We too continue to keep and all those PALS and CALS in our prayers. Stay strong Brother.
Hi there Garey family. I just wanted you to know that I read an article about you on Fox News and feel so incredibly honored and privileged to get to live in a country with heroes like your husband/father. I am a complete stranger to you, but I just felt so compelled to reach out given the political climate in the hopes that you realize you aren’t alone and will never be alone with all the compassion and positivity your family has managed to inject into this world. The Air Force would be proud, as I am sure you all are, as I am certain I am in all of you.
Thank you for all of your service and sacrifice in making this world a better place. Enjoy your travels and may you forever cherish the smiles and memories they create.
Warmest regards,
Other Tom in MA
Thank you Tom for your words of encouragement. It means a lot to me and my family to know we are supported by so many.
I loved serving my country and would do it all over again. Thank you again.
We love ya’ll and are damn proud to call you friends.
We love ya’ll so very much!!!
I too was moved by your article as my mother had ALS. My father was a 23 year veteran of the Coast Guard who served in WWll and my mother was there with him for the duration. Just wanted to say that I admire you and your family for doing all you can to raise awareness! Have the time of your life on your travels and I look forward to future writings! You and your family are in my thoughts and prayers!