It’s Okay to Be Okay

Well, it’s been just over a month since Chris died, and for the most part, the girls and I are doing well. Sure, we have each had a rough day here and there, but we’ve learned to just lean into the mood, sleep it off, and generally feel better the next day. Life was so incredibly stressful and unpredictable during the past year that I think we all felt a bit of relief when the end finally came. Sure, we miss Chris, but he was pretty miserable too so it wasn’t hard to emotionally release him during those last weeks.

I expected to feel the relief. It makes sense to me. What I didn’t expect was to feel this…. okay.

After both of my parents passed I felt a crushing grief that remained intense for months, even years. That’s what I was expecting when losing a spouse, only worse, right? I’m assuming that this is due in part to the length of his illness. (I’m going to sound self-centered here for a moment, but hear me out…) Caring for someone who is terminally ill and gradually becoming more and more handicapped is incredibly difficult. The greater his needs became, the smaller my life became, until it was all about the illness. I still had two teenagers, an aging mother-in-law, a home, and a dog to take care of, but everything revolved around ALS. Now I do understand that for Chris, it was “all about the ALS” for much, much longer. He couldn’t ignore the little changes every single day, but I could put them off from encroaching upon my world for a time. But it was all he could talk about, think about, and it was just in both of our faces every single day for years.

It was like someone was banging pots and pans with a metal spoon down the street, day after day, night after night, and gradually moving closer to us until they were right over our heads. Relentless. Loud. Unforgiving.

The last week was unbearable.

If there is anything that brings me to tears, it’s not warm fuzzy thoughts of Chris, it’s of the trauma we endured during the month of December. It’s remembering my kids coming downstairs each morning and asking if their father was still alive. It’s thinking of Chris not sleeping for 48 hours straight (even on morphine) because he was too restless and air starved to know what was going on, and my angel friends taking care of him in the kindest ways I’ve ever known. It’s thinking about the total and complete exhaustion I felt when I had nothing left to give to the situation, but was ready to dig deeper if I had to. It’s thinking about how the hospice facility screwed up and did nothing to get him settled that first day and how angry and frustrated that made me that he was still suffering even in their care. It was all so bad. Just bad.

So yes, anything, and I mean anything, has to be better than what life was like in December. Even if it means moving forward without Chris.

Kind of hard to wrap my brain around this one. I’m grieving, and I know this, and I know that I’ve been grieving for years, but this is still just not as bad as I thought it would be. I’m waiting for it to change, waiting for it to hit me. Might take months, or even years to process this mess.

And then there is the other side of things… as much as I loved Chris, he wasn’t always the easy going guy everyone thought he was. He suffered from untreated depression and could be difficult to live with at times. He was usually wound tight and stressed about work, or money, or something else. He started trying to pick arguments when he drank too much, so I learned to just not engage and excuse myself to the guest room on those nights. He never quite understood the girls’ issues with anxiety or depression, which caused some problems in their relationships. He liked things a certain way in the house (a bit of an obsessive neatnik), and was easily frustrated by the rest of us not always getting it right. These are just a few examples, and all of these things were manageable for the most part. I’m not perfect either and completely own my faults. We did make things work rather well for over 20 years, so there’s that. Then ALS and Covid hit, one right after the other, and all of these issues got waaaay more intense. Now he’s stuck at home, and he’s feeling a little bit worse every single day, and his moods reflected it. But now I was in a position of refusing to fight with a dying man. Just let him be right. Talk him through the frustrations. Do everything his way as much as humanly possible. Balance things out with the kids when he was driving them nuts. Let him make choices whenever possible, since he was losing control everywhere else.

You can see where this might make a girl a wee bit tired.

So I do miss Chris, but not the Chris from December. I miss the one from five years ago before this all began. The one who was fun and a big dreamer and no, we didn’t agree on everything, but we had a pretty great thing going on. I started grieving him a long time ago.

It’s just an odd position to be in right now, where people outside my house are grieving for him, and feeling bad for us, and expecting us to be just sad and awful, and the three of us just…aren’t. Life isn’t better without Chris, but it is certainly better than it has been the last two years. We are calm. We are making plans for the future. We are caring for ourselves without the guilt of ALS. We are able to relax and laugh and go out and do things. (as much as Covid allows…) We can have happy moments without constant fear of something really bad happening in our house. It already has.

I know this will be a journey, and I’m only a few weeks in, but the girls and I feel the healthiest we’ve been in years. (at least mentally, but we’re working on the physical stuff too) Lots of people say “it’s okay to not be okay”, but I’m here to tell you that after suffering through a traumatic loss, “it’s okay to be okay” too.