Conversations

If you know me, I mean really know me, then it is very likely that I will talk your ear off about any number of things - with or without your consent. If alcohol is involved, it is far more likely that you will not have consented to hear the topics I select, but I guarantee you will laugh (either with me or at me). Lately we have been forced to have many conversations - hence my sudden awareness on the consent issue - with doctors, nurses, therapists, family, friends, and even grocery store managers about Brent’s illness.

In one such conversation, a nurse in a hospital told me that I had to take my husband off his insulin pump and not properly manage his sugars because the hospital did not have the insulin he takes. Instead, we were supposed to allow them to administer a different medication, which would have ruined his glucose levels. When I advised her that we would handle it and that there was no need for concern, she replied, “Yeah, until you give him a double dose and kill him.” I promise it wasn’t Brent’s death I was contemplating at that particular moment.

You see, when you finally arrive at the diagnosis of ALS, it means that you have undergone ALL of the tests that brilliant people, who go through years and years of school can conjure up. These doctors then call their friends and colleagues and try to find ANY other syndrome or combination of diseases that could result in the symptoms you exhibit, so that they don’t have to walk in the room and tell you that even though you are still young and should have plenty of life left, you have (maybe) two to five years left.

Back in August, Brent was in the hospital after a fall that hurt his legs and providers had been coming in and out of the hospital room the entire day for non-consensual conversations. The care team had quickly gotten to the most likely diagnosis based on the medical records from the previous eight months of testing and their assessments - one ALS and the other CIDP. The team started Brent on IVIG treatments and we were hoping for anything other than ALS. During the hospitalization, we also had a conversation with Taylor, a speech pathologist whose last name I do not remember, but whose kindness I will never forget.

She was the only provider who came in the room and actually sat down with us. I mean physically pulled up a chair and looked us in the eyes and asked us questions about his speech and swallowing, but also about our general well being. At this point, the care team must have collectively decided on ALS because Taylor, in the kindest way possible, started prepping us for what would come next. I won’t bore you with all of the details, but this girl gave us options. She gave us the hard reality that Brent would eventually lose his voice and his ability to swallow food normally, but she followed it up with the name and phone number of her friend that might be able to assist us with voice banking so we can record common words and phrases so that I can still hear his voice. In a whirlwind visit where most people treated us like he who shall not be named, Taylor saw us as hurting people who needed someone to take the time and just sit together and have a hard conversation. She even brought tissues.

Since then, the conversations have gotten interesting, especially between Brent and I. We have a DARK sense of humor already, but I have to believe that we aren’t the only couple facing a terminal diagnosis that randomly hears a song and asks if that one should be added to the list for the funeral, right? Do you figure that when other ALS patients don’t want to do something they simply guilt trip their wife by saying, “but I’m dying” and then laugh while you go do the thing they didn’t want to do? Or when he wants to spend money on things we can’t actually afford and jokes that they can come after him once he’s gone. I’ve had to talk him out of a Viking funeral - not because I wouldn’t give it to him if that was his wish but because it’s not legal in Florida. We also had to discuss why it would be inappropriate to take him to a taxidermist to be stuffed and stood in the corner of my house. This is obviously sad and the underlying reality behind all of our ill timed jokes is that it’s true - but what if we couldn’t laugh about it? We’ve had that conversation too.

At the heart of this, we are having the conversations about funerals and living wills and medical care plans. We’ve debated euthanasia, death with dignity, and driving off a cliff together Thelma and Louise style. I know this is hard for you all to read, but this is also excruciating to try and hold inside. Hence this blog, the depression and anxiety meds, and friends that I am so grateful for who allow these same types of conversations and that keep me normal - well, as normal as I ever could be.

When we first got the diagnosis, the Hot Mess Club (yes, my friend group has a name) circled the wagons and asked how they can help - but more than that, they treated me like ME. They haven’t stopped teasing me or calling me an idiot when I’m being an idiot. They laugh at my jokes, they hug me when I need hugs, and maintain their distance otherwise - because touch is not my love language. I think the hardest part about grief is that people don’t know how to behave and so they run away or avoid you. They are so afraid to say the wrong thing that they say nothing and people are left feeling alone when they truly need people the most. I am grateful for the people in my life who will have these conversations and will understand that my reality now includes some really hard things but hard things can be funny too.

I am grateful for the people who have taken the time to reach out and purpose to be active in our lives and to be there for Brent. His nerd friends who he usually only played online games with have visited, IN PERSON, at least once a month since we found out. If you know gamers, this is a huge deal. We’ve had great nights with friends where they never brought up his diagnosis and we just drank and laughed and played games. We were allowed to be who we’ve always been - not the diagnosis.

To end this particular conversation, I would share with those who are maybe uncertain of how to be or how to interact, and my advice is this…just be you. Be who you’ve always been to Brent or I. If we need something different or we request a boundary or a specific type of interaction try to respect that. We know that this is hard and that you are all grieving over the thought of a world without Brent in it…but for right now, he’s still here. Let’s have a conversation about THAT.

All my love,

Sandy