Living with ALS

Strength does not come from what you can do, it comes from overcoming the things you once thought you couldn’t.”

Rikki Rogers

Ready for the no-holds-barred truth? No rose colored glasses. No painting a shiny pretty gloss on it. Living with ALS is an absolute nightmare I wouldn’t wish on even my worst enemy. It seems every day there is something ripping off a freshly started scab so the bleeding never stops. It’s the slow death of dreams, plans, friendships, lives. I’ve mentioned enough times that we are the fortunate ones. We have so many blessings from this disease – friendships, advocacy, experiences – but between those blessings is absolute devastation.

The strength it takes to wake up every day in a body that is failing you is incomprehensible. I know plenty of ALS patients who have eventually succumbed to that weight and set it aside. I am living with a man who takes that mountain, every day, and carries it in his immobile hands. Every day I see Matt unable to be the father he wants to be to our sons. The mixture of joy and pain in his eyes when the boys are playing sports, jumping on the trampoline, going to a campout, going for a walk. How he aches to give them a hug. I can’t tell you how many times in the 7 years since he was forced into his wheelchair his body has failed to let him be an active dad. Each time his body gives out is another small cut. The amount of emotional pain, along with the physical, that my husband has had to endure would cripple many a lesser man.

Our boys are absolute miracles. Every child is a miracle, obviously, but how God stitched these boys together inside me to make them ready for this life still amazes me. JP is the ultimate protector. He holds everything inside because he worries Matt and I will be sad if he shares his fears. However, late at night when I tuck him and lie with him to talk about the day, with the lights off, he feels safe to talk. He is afraid. He is afraid to lose his dad to ALS, that kids will make fun of Matt behind his back if he comes to events. JP checks every venue to make sure Matt can get there in his chair. He worries about Matt choking, his bipap breaking and Matt suffocating. If Matt is physically exhausted and needs extra time in bed, JP asks “Is Dad dying, Mom?” He has started helping with Matt more if I am busy around the house or with his younger brothers. On May 4, we went to hang out with friends while Matt went to bed. JP said he felt like a horrible son for leaving Matt since they both love Star Wars and it was May The Fourth. On the way over to our friends house I explained how Matt understands and isn’t upset that JP is a normal 12-year-old who wants to hang with his friends over his ol’ dad. My heart nearly shattered when JP said “Yea, but we aren’t going to get as much time with our dad as most kids. I’m a horrible son for leaving.”

Kip holds an immense amount of anger. His sense of right-and-wrong and his outrage when his version of “right” is wronged is something to behold. His rage almost rivals mine. Kip is our sports lover and it is not lost on him that with almost every team he is the one who can’t have a catch with his dad. His dad can’t ever be his coach. Regardless of that, Kip still seeks his father’s approval on every play. He searches the stands for Matt’s smile after a triple, a touchdown. While he is our naturally athletic child, he is the one that needs the most pushing. To reach his potential, he needs someone who can dedicate time and energy to his technique, who can push him past where he thinks he can go because he has so much left inside to give. Kip needs a dad who can whoop his butt when his sportsmanship suffers for his competitiveness. Both Matt and Kip know that Matt could be that dad is only his body didn’t limit him. The unfairness of this flies in the face of Kip’s sense of right-and-wrong.

Pax lives under the assumption that any attention is worth whatever he decides to do. He is a one-kid wrecking ball…on speed. I described Pax to his first grade teacher as “a whirling dervish”. In his life he has had to wait until I am done with Matt too many times to count. The whole reason we started down the au pair road was because I was doing an atrocious job of being a mom to a baby while a caregiver to a disabled husband. He recently started talking about “when Dad gets better” or “when Dad walks again”. His hopefulness and certainty of this outcome help us all stay positive. It’s a done deal for Pax, Matt is beating ALS. Pax corrects my driving when I take a turn too sharply or hit my brakes too hard and Matt is jostled in the back. He is his dad’s protector, moving people out of the way in public, fixing Matt’s hands, climbing in his lap to straighten his head. At 7 he takes care of his dad as best as he knows how. God, I hope one day Pax is proven right.

While the above are all observations from the front row, there is one perspective I obviously know intimately. The caregiver and wife. I put caregiver first because that is what ALS does to a marriage. Our marriage has had to take a backseat to this disease. And I’m angry about that. I will forever be a proponent of marrying someone you enjoy as a person and not basing your marriage on physical compatibility. Anger is my default emotion – ask Matt and my mom. I’m not sure that is the best personality to deal with this disease, but it does help that my anger goes hand-in-hand with my stubbornness. We were supposed to live the military lifestyle. Matt was going to be a rockstar pilot, we would live all over the world and expose our perfect children to different cultures, then settle down in the Northeast when Matt retired to civilian life and I would get to pursue a career/passion in the arts. We would have the dream marriage and be madly in love with everything that goes with that until we were old in rocking chairs on the porch of my parents house in OBX. It’s laughable and cry-able to think of that naive 23-year-old bride.

Living with ALS is waking up not knowing what the day has in store. Is Matt going to have energy and be up or is he going to need to spend the day in bed? It’s not letting too much hope creep in because the falls have become too painful. It’s fighting with agencies and corporations and politicians for the most common sense issues. It’s giving everything you have knowing it still is not going to be enough. And also knowing you have to get up the next day and do it all over again.

BUT…there is always a but…ALS is so much more than the bad. It is strangers showing up to help and celebrate. It’s friends who run to us instead of away when things are tough. It’s realizing at an earlier time than most who our family is, blood or not. It’s coaches from years ago jogging across the field to just say “Hi” and ask how our kids are doing, by name. It’s messages from social media saying our family is a bright spot in their day, or inspiration as their family is facing this too. It’s running marathons with the names of people who are a part of our friends’ stories repeated over and over in my mind. It’s our friend getting to the water park early and staking out the best shaded spot with the comfy recliner because that’s the best spot for Matt. It’s waking up in the morning, exhausted from not sleeping well, and looking at the love of my life beside me and knowing, without a shadow of a doubt, together we got this. The good that comes along does not make up for the bad that this disease brings, but it makes it easier to carry the load.

ALS is isolation, love, pain, joy, thankfulness and despair, all co-existing, at the same time, inside yourself.