It’s not you, it’s me

Of all possessions a friend is the most precious.

Herodotus

ALS steals more than our loved ones body. It steals time, friendships, relationships.
I am going to forget your birthday. I will definitely forget your kids birthday. I won’t text you back in any sort of timely fashion. I will turn down your offer to hang out more often than I will accept. I will almost always be late to anything we plan to do. I bring a lot of baggage.
Most of these things were true before we were even diagnosed with ALS. I remember sitting, drunk, in the hallway in college on the phone with my best friend and her being angry at me because I was talking about some guy drama, meanwhile her grandfather had recently passed away and this was the first phone call since his funeral. Not my finest friend moment. I have a tendency to get wrapped up in myself and my life. More so now that I am a mom and a wife and a caregiver. I know my faults and I work on them but I also fall back in to old bad patterns.
It’s not that I don’t want to be there for you. I would love to be! I would love to spend a girls weekend in some warm tropical place like I see some friends on social media. I would love to do something as simple as go to dinner and linger over dessert and drinks. I get to do that sometimes, but not as often as I would like. For me to do these things, it takes a lot of planning and sometimes I just don’t have the energy to do it, or I feel guilty asking my in-laws to watch the kids for the 3rd time this week, or I can’t find a babysitter. I really really want to be a normal friend, but I can’t be one right now.
I can’t leave my kids alone with their dad. At least not Pax, the other two are pretty close to the age where they can. For me to go anywhere I have to find and pay a babysitter, or ask the in-laws to watch the crazies. If it’s an overnight trip I have to find someone who can be with Matt overnight and watch the kids. I have to find someone Matt is comfortable staying overnight. As much as he loves his parents, having them stay with him at 36 is a little demoralizing. I can’t up and leave within hours of making plans. I need at least a week notice. It’s never Matt saying I can’t do anything, it’s me saying I can’t. My kids need me, my husband needs me. I work to find a balance, but first priority is home. If Matt is having a bad day or the kids need a parent, forget it, I’m out.
I get out. I go to the gym almost every morning. I go to dinner with girlfriends. Just the other weekend I spent a night in Philly with some girlfriends and got a rude reminder that I am, in fact, 36 not 26. These excursions from the ordinary take thought and planning and a little bit of guilt. Matt tells me all the time to not feel guilty over hanging out with my friends, but I can’t escape the feeling. I know it’s only in my mind, but it feels like rubbing salt in his wound. He can’t do it but I can and that’s not fair.
Sometimes I am just too tired to meet up with you. In our house, I do the physical work. All of it except what we are fortunate to hire out. Matt got sick of my horrible house cleaning abilities so we have 2 wonderful sweet women who come clean once a week. We also have someone cut our yard during growing season which is helpful but I do miss the smell of fresh cut grass. Other than that, most of the day-to-day stuff falls to me. Dishes, laundry (except when I send it down the road to Deb and Jim!), homework, cooking, you know, the normal every day stuff that every family does. And, I’m not complaining. We are VERY fortunate that I can stay home and be here for Matt and the boys. A lot of ALS families have to work to support their loved one. It’s just sometimes overwhelming and the thought of getting dressed and finding a babysitter for a dinner out is too much for my brain to handle.
Sometimes it’s coming over to your house that I will turn down. It’s awkward to get Matt in to a lot of houses and most are not wheelchair friendly. And that’s not anyone’s fault. But Matt then feels like he’s in the way and it’s inconvenient to accommodate him, or he gets stuck in a room and feels like a burden on whomever is in the room with him. He can’t move with the party. I love my husband, I don’t want him to feel like he is hindering anyone’s good time, so we stay home. Our home is literally made for him and his wheelchair and it is where he is most comfortable. All his stuff is here in case anything comes up. He doesn’t ever feel in the way around here. He can move freely throughout the house or wherever anyone wants to go. He doesn’t feel like a bother. So it’s not that I don’t want to come over, it’s just I can’t right now. But hey, our door is always open to any friend near or far!
So, I am not a good friend. I am a loyal friend. I love my friends fiercely and will protect them to the end. I will always be willing and able to be on the phone to hear about your day, or your kids, or your problems. I will try to make time for you and to be there for you physically when it is possible, but please understand that it will not always be possible. And I know I am missing big events. God, I hate missing those moments with you. I hate missing the small events too. Please remember that I agonize over whether I can make it to you or not and it hurts me to say no.
I know there will be a day when I can be a really good friend again. When I will be able to travel to see you and spend time with you and linger over dinner and dessert. I don’t like to think of that day because in order for me to be able to be freely there for you, it means I am going to lose something even more precious than our friendship.