I’d only heard about you a few times before I got to know you. Once in a while you would come up in the news or in an article, as a rare disease I thought no one in my family would ever need to worry about. The odds seemed huge, and we’re just not that lucky. Then one day my sister mentioned you. I saw her face that day she quickly spoke those three letters, as if she’d been practicing. We were standing in her yard watching the kids jump on her trampoline as her husband passed behind us with a subtle, but hauntingly apparent limp. It could have been a pulled back muscle or another sports related injury. After all, Bert was an avid road biker, runner, martial arts competitor and an adventure racer. It should have been something he could at least pronounce, but instead it was you. You, ALS- an uninvited guest, would eventually become a member of the family. You were committed to attaching yourself to one person in particular, but making yourself very well know to each and every one of us in your own deliberate ways.
ALS, you seemed to creep in slowly- as if to give us time to get adjusted to you being here. Knowing you the way I do now, I may have given you too much credit back then. However, little did you know, that time is what we used to initiate the Hope we professed then and have promised to hold onto. So, there! You were creeping in and Bert was enjoying the freedom he found behind the wheel of his Subaru. You may have started to take his ability to walk safely, but you took a back seat while trips to Sophie and Alex’s school were made and meaningful long road trips to Florida to visit friends were had. Later, you even sat quietly as trips to Massachusetts and Maryland were taken, as if to taunt us with the possibility that even you agree, “anything could happen.”
ALS, you picked the wrong host if you were looking for someone to take down without a fight. I hate to tell you, but you picked someone that’s ‘not like the others’. As you continued to make yourself comfortable, Bert continued to coach his son’s soccer team all the way to a season where they were the Division II champs. Those boys learned a lot from Bert and you, inadvertently. No one should have to observe what you can do to a person’s body, but at the same time you provided the window for people to see deep into a man’s soul and bear witness to an amazing amount of courage and stamina, that may have otherwise been taken for granted. While goals were being made on the field, you were trying to score anyway you knew how. Not so fast, ALS! The more you take away, the stronger the drive to strive for the positives become. You might have gotten the hint during all the time you spent on the bike when you were trying to take the last bit of strength in Bert’s legs away. Or, you might have realized the ‘fight was on’ when Bert rose to stand, just a year ago for our family Christmas picture.
And, ALS, I have news for you. You can’t stand in the way of a determined family’s bucket list. I’ve watched as The Lange’s have done their absolute best to ignore you while they went to their Happy Place- Florida and Disney a couple more times, took trips to the beach- where ‘your ass’ obviously wasn’t fond of the sand or the sun!, Busch Gardens- where you weren’t going to ruin a thrill seekers roller coaster ride under any circumstances, Niagara Falls, Camel Beach- where they showed you all about the meaning of “where’s there’s a will, there’s a way” when Bert got in the pool. And by far, the best day ever, when they dragged you to a Foo Fighters concert to prove to you, “it’s times like these you learn to live again.”
It’s no secret none of us like you, ALS. No one has really ever gotten used to you or accepted you, or plan on letting you off the hook easily. But, in the spirit of my sister’s motto, “be grateful always” and “always find a positive”, I need to thank you. Because of you, I am part of a family who appreciates every moment. It is because you that we believe in Hope and miracles and have faith, albeit tested- we have it and hold it tightly. I’ve seen my niece and nephew grow up fast, but more importantly, I see them. I see them often and my husband and kids are able to see them too, and we are a few of their biggest fans. If it wasn’t for you, ALS, they may not be such a big part of my life and for that I am grateful. They impress me as people who smile through the pain, bring laughter to the darkest of days and love their parents unconditionally. Sophie has literally been her Dad’s voice and Alex has the gift of simply being present, which can often times be a gift in and of itself. ALS, you might have made it difficult to give a hug, but you will never take the love between a father and his kids away.
ALS, I see my sister. I know you see her too. I see her holding it all together. I see her being the rock that should have, by all human rights, crumbled long ago. But, guess what? She hasn’t. And she won’t. It was she who got a quick diagnosis due to her impeccable attention to detail and determination. It was she who set the stage with spirit, Hope, gratefulness and militancy. It is she who fights a battle of her own, but never flinches in your audacious attempts to push her husband to his limits. I see a caregiver who never gives up or misses a chance to say I love you. I see a wife who has stayed true to her vowels and would likely do it all over again for this man. I see a mother who is honest and teaches ‘real life’ to her kids and one day they will tell her how she made them who they are on that day. I see my sister and wish with all my might that I could rescue her from you, ALS. But, I think we both know I can’t.
And let’s talk about my brother-in-law, your innocent victim. He doesn’t deserve this, yet somehow because of you, ALS, he has changed me (and I suspect many others as well). He is a man who believes “things just happen.” He doesn’t question the whys and how’s like many of us would and often do. He chooses to spend his energy on ‘just being.’ Something we could all benefit from doing a little more of. Bert is a constant reminder of the fact that life is short, so you should make every day count. He pushes those around him to be their best and truly wants them to be happy. He’s genuine and transparent and is brave as hell. Essentially, the same man he’s always been without all the physical abilities. It’s amazing how you can take so much from a person, yet they don’t change when they have their mind made up to guard themselves from you. So, ALS, if you haven’t realized it yet, I’m here to tell you, have your work cut out for you.
I know it’s been three years and this is the first I’m writing to you, but I just think we should probably be friends. I have a feeling you’ll be around for a while.
This is a guest blog written by Sarah Hammaker, my sister. She is a friend, mom, wife, daughter, sister, Dietitian, Christian, ALS Warrior and so much more:) Thank You.