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.