Moving Forward

“Life is a balance between what we can control and what we cannot. I am learning to live between effort and surrender.”

Danielle Orner

Hello people! So the year of the 2020 blog obviously did not happen for Matt and me. Started off decent and quickly fell off. We were busy but I can’t point to exactly why we didn’t keep up with the blog other than we both got “lazy”.
I wanted to start off again talking to my fellow caregiver spouses. I recently had a long phone conversation with a newly diagnosed wife of a pALS. They are still in the phases of hoping it could be something else…anything else. But also being smart and trying to prepare for a future with ALS. It brought be right back to the beginning of Matt’s and my journey. The thinking I had a handle on the diagnosis and then crying out of fear, frustration and sadness in the middle of a mundane task. Of hoping for it to be ANYTHING else. Heck, almost 10 years later from his preliminary diagnosis and I still cry about it, for all the same reasons.
Recently Matt and I had a talk. I do not know about other caregivers but I have a hard time telling Matt about the things I struggle with about him having ALS because I know he feels them too. I don’t want to add to his burden. I miss having a husband be just a husband. And everything that comes along with having a husband. Mostly I wish we had held hands more often, kissed more. I wish we had been more affectionate. Because all that is pretty much gone now. And while the physical perks of having a husband are greatly diminished, Matt is still here. I think the disease has changed his personality some – how could it not? – but he is still that impossibly witty cadet on dorm restriction from 2002. He is still the smartest person I have ever met, annoyingly so. And stubborn, and sarcastic, and funny, and possesses the most random knowledge of trivia.
I know my fellow spouses feel the same, unless you are a way better person than me, which is likely, and don’t think about all that has been lost. If you can only look forward, please let me know how you do it! It’s a weird state of mourning the person who is gone and being grateful for the person you still have.

But, I digress from what I really wanted to write. I wanted to write to other caregiver spouses about friendships. About some friendships I personally find very important. I don’t remember if I ever wrote about our friends we have made since moving to Pennsylvania. When we moved here we already knew Matt had ALS. Matt was still a physically normal 30-year-old. Sometimes it takes a while to make new friends when you move to a new place. After about 6 months we started making friends. We are still friends with some of those people, but a lot of them have fallen off as the boys grew and their interests took over our lives. Our close group of friends – our squad – have never known Matt as a physically normal person. A lot of them also realize he is not really a normal guy anyways, so it fits. I would say some of our closest friendships have really formed over the last 5 years.
These friendships are especially important to me for the mere reason that they do not know Matt as anything other than who he is now. Sometimes, it’s hard to be around the friends we had before the diagnosis, the wheelchair, the paralysis. They feel bad for us. They make me think of a different future. They remember the guy I mourn. I feel, rightly or wrongly, a lot of our “old friends” have a hard time being around Matt so they tend to stay away because catching up is difficult for them too. So having our group of friends here that don’t know any different is awesome for me. They don’t think it’s weird if I show up without Matt. Or if I take him home and then come back to hang out without him. They don’t ask if he is OK at home alone. They know he is. They know our life like this. If we cancel at the last minute there are no questions.

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I have never been a part of any caregiver support groups. It’s not my thing. I don’t think I have the personality for it. I don’t immerse myself in ALS. Going back to the phone conversation, I realized and said “I am the worst ALS wife”. I know Matt’s ALS, but past that, I don’t know that much. Matt is the one who dives in to the world. Part of the reason I don’t is because I don’t have the time. Between the 3 boys, the old dog, taking care of the house, taking care of Matt and taking care of myself, I don’t have a lot of free time. The other part is that in the free time I do have I don’t want to spend it in that hole. I don’t let every aspect of my life be about ALS and I feel like if I participate in a support group I would be more in the ALS life than is healthy for me. I would probably benefit from some support of spouses in the same position but I just can’t bring myself to do it. I’m very good at procrastination and avoidance.
Fellow spouses, I urge you to make friendships outside the community. And maybe, make them the most prevalent ones. Keep your old friendships from before, but also understand if they fall off, it’s not your fault. You have so much on your plate that the people who really love you will keep showing up even if you are a distracted friend. They don’t care if your spouse is not the same person as they were a year ago, they don’t care if you forget to call them back, they are the people that are there for your forever. Don’t ever let those friendships go. But, if there are people in your life you thought were beyond important and they stop showing up, let them go. Don’t expend energy on people who don’t get you and your life. Work to forge friendships with people outside the ALS world who come in to your world. It’s refreshing to take a 4 hour break for a Saturday night. To be with people who don’t ask about your spouse or talk about ALS but still get it and love your family. It’s there but it’s not the focus. ALS did not bring these people in to your life, your common interests or common children of the same age did. It’s an added bonus these people are fantastic.
Friends of caregivers, you will never know how important your friendship is to us. I for one am not a girl who expresses feelings very often in person. Our squad knows who they are and this is my way of telling you that you are so very important to my survival on this path. I am forever grateful our children ended up on the same baseball team, in the same grade, at the same elementary school. That you dance in kitchens with me, run stairs with me, take our kids for an afternoon no questions, check up on us the morning after, make me laugh and smile on days it seems like I can’t. You are so loved.