If you’ve ever fallen down and lost your spark, get back up as the whole damn fire.Healing Light
Everyone does it. No one has it all together. Not everyone is picture perfect. Even people that say “here is the real me to show you my life is not Instagram perfect” but their “real” picture is still perfect. Yea, not fooling anyone. They took that picture probably 15 times before getting one they liked enough to post. Matt and I promise to be as transparent as we are comfortable being about our life with ALS.
If it makes you feel any better, sometimes I have to read his posts 2 or 3 times to get what he is saying! He is on a different intellectual level than me. He has lots of time to sit and think and ponder. He enjoys letting his mind wander into spaces that I never let mine go. Matt has always been that way. He likes staying a little off the beaten path. He is so different than me in some ways.
I write as if I am talking to you in person. I forget what it is actually called, conscious stream, maybe? Then I go back and edit for about a day or two to make my ramblings make sense. I am so much better at talking on paper than talking in person. I don’t have quite as much time on my hands as Matt does so I don’t delve in to the bigger issues, such as why mosquitoes exist. I’ve been this way for as long as I can remember though. I get through the day by doing what needs to be done, make a list and accomplish it.
Matt and I got in a fight the other day. I don’t remember what started it. Probably something to do with this never ending social distancing and being around the same 3 little boys who sometimes want to start WWIII in our house and trying to being mom, caregiver, teacher, cleaner, etc. When I get stressed I tend to yell at people. Matt doesn’t yell. I think me yelling started it. Anyways, I got defensive, he got accusative, I got critical, he got silent. It was the usual way we fight, and have for the past 18 years.
And then he made a point that at first was difficult but now I appreciate. He said something to the effect of “You look for problems. I don’t do that. I don’t look for problems.” When he saw my face and whatever words I was about to hurl at him he quickly followed with “But you see the problems and you try to fix them. And we need people like you in our world.” Good save babe! It might be one of the fundamental differences in us. In everything, Matt looks for the good and I look for the bad. Not that I hope to find the bad, but I want to be prepared for the worst. I would rather expect the worst and be pleasantly surprised than hope for the best and be let down.
I notice the pillows aren’t displayed straight in a store, the boys didn’t try hard enough in their game, the yard guys didn’t get the leaves out of the corner near the fence, the touch-up color on the wall is just slightly different than the original. All these are things Matt would never notice. He is not wired that way. They are glaring to me and I can’t let them go. I’m not wired that way.
And now we have this HUGE problem. My husband is dying. I can not fix it. No matter how hard I try, or what I do, or who I take him to, I can not stop my husband from dying…and most likely before me. Sometimes my insides feel like they are expanding inside of me and I find it hard to breathe. I can feel the frustration and irritation sitting on my chest and crushing it. What I am trying to say is that I fall apart. And when I do it, I do it spectacularly. Fortunately, most times, I can hold it in until I have a moment alone. There are ugly tears, hitting the steering wheel of the van until my hands hurt, sitting on the floor of the shower until the water starts to get cold, screaming words that would hurt if anyone else heard them, snapping at the family and then turning myself off and becoming cold. My mind races down a million different paths at the same time. I can put myself on autopilot and most people can’t tell I am having an internal struggle. It can be suffocating.
I was taught that hard work and perseverance can get you anywhere you want to go. Faced with a problem that hard work and perseverance can’t fix is difficult. Some days I don’t want to hold it together any more. I want to be angry and hurt and sad and to mope. People have told us, Matt and me, that we are inspirations and we handle this all so well. In fact, I think most of the faces of ALS probably get similar comments. I think that in order to put yourself out there you have to have that good face out in the world. But I’m going to venture that in their home, their safe place, it isn’t always smiles and laughs and joy and thankfulness.
I am eternally grateful Matt has the slow mutation of ALS. It’s been probably 8-9 years since his symptoms started. He is doing awesome and I am so happy to get the time I get with him. I am beyond grateful that he gets to be with our kids. That he can still roll for walks with them and talk to them and snuggle in bed at night. But, as grateful as I am for all that, I still have my moments when I am REALLY angry. I’m angry this happened right as we were about to start our family. Why couldn’t this have hit us at 58 instead of 28? I’m sad Matt will likely never get to coach the boys in t-ball or do Boy Scout stuff together – the 2 things he was most excited about doing with his son. That he never got to really hold and snuggle Pax when he was born. I’m angry that right as our life was gearing up – Matt finished flight school, he got selected for the jet he wanted to fly, we bought our first house – we got stopped in our tracks. And I get sad. I get sad about all the things we have lost to this disease. I get sad and a little scared thinking of all the things we could lose to this disease if researchers don’t find a treatment/cure. We, okay me, had so many dreams about this life we were going to have together and they got blown apart. Sometimes its really hard to be OK with it.
However, I still have him, Matt. He is annoyingly good at not sitting in the funk or letting me. He believes that he is still here because his purpose is not done yet. And he believes we have yet to see what my purpose is for being here with him. God, I hope he is right! Matt helps me remember that we still have it good. That there are others that have it worse, both in ALS and outside. There is no good to come from being in the bad angry place.
So, friends, I hope you have someone like Matt to help you out of your darker places. I also sincerely hope you realize it’s OK to go to those darker places, anger and sadness and hurt, as long as you come back to the rest of us. I hope you have someone you feel safe with to let your mask down. That just because you put yourself out there as a “role model” to others you don’t need to always put an Instagram filter on your life. Falling apart is going to happen but you are too beautiful to not put back together.
Because I like to relate everything to a song, this played on our Alexa and led to this post.