I have been thinking about the time right after Greg’s diagnosis today. It was a very scary and uncertain time. After Greg was released from the hospital he continued to have dissections for months. We were in and out of the ER countless times. It seemed like it would be any day that he passed away, and we lived day to day. We didn’t dare plan anything too far ahead because we didn’t know if it was realistic. It was unsettling to go to bed at night and wonder if Greg would still be alive in the morning.
We tried to be perfect “just in case”. We were extra diligent in so many ways, and a lot of them were really good things to be diligent in. The problem was that we did them more out of fear than anything, and we made a lot of changes overnight, which is not realistic. What if this was the last time I talked to Greg? That would mean I would regret it if we parted with any kind of negative feelings toward each other. If the house wasn’t clean and he died today wouldn’t that make things even worse? If Greg died tomorrow and we didn’t have family prayer or scripture study our last night together what was that teaching the kids? They would surely remember it forever! What if? What if?
It felt like we had to make the most of every moment. Suddenly, we felt like we had to do a lot of things NOW because when else would we do them otherwise? We needed to create memories and try to make every moment a memory. We needed to try new things together, do lots of things as a family, make special efforts with all of our relationships, etc.
Living This Way Wasn’t Real
What we soon realized was that living this way is exhausting. We were living in fear. It wasn’t real. All the problems we had always had in our family and relationships were still there, we just weren’t dealing with them. We were trying really hard to cover them up because if we didn’t cover them up, maybe we weren’t making the most of the time we had left. Everything was being dealt with on the surface.
After a couple months we were tired, and we missed the everyday (somewhat) uneventful life we used to have. The reality and heaviness of our situation and the emotions we had been shoving down were starting to come up. It was inevitable. You cannot bury things like that forever. Eventually they come up. I don’t know if or when we will be open about how this has affected our relationship, but for now I will say it has been rough. Really really rough.
We both had our own emotions to deal with, and we had a LOT to process. Greg was dealing with the reality of his mortality and I was dealing with the reality that I could be raising 6 kids on my own soon. We still didn’t know which of our kids had vEDS, and that was extremely stressful too. We had a lot of things to work through, and burying them could not happen any longer.
What Live Like You Are Dying Really Means
When I used to hear the phrase “Live Like You Are Dying”, I thought it meant to do everything you ever wanted to do, have good relationships, make every moment a memory, etc. Exactly what I just described above. I think most of us think that. It’s a great thought, and I think those things are great goals, but you can’t get there overnight. If you do, you are pretending, and you can’t do it for long. Life is full of great an amazing things, but you can’t avoid the less amazing things. They are going to be there no matter what, and it’s important to embrace them and continue living a less than perfect life, always striving to improve.
Our perspective on life is a lot different than it was before the vEDS diagnosis, and it’s also different than right after the vEDS diagnosis. We still want to make the most of the time we have left. Step by step we have made a lot of positive changes in how our family functions. We do a lot of things we would not have done before the diagnosis because we want to do them together. The difference is that we don’t do these things because we’re afraid we won’t get to do them if we don’t do it now. It’s not fear based at all.
Being Okay With Imperfection
We are also okay with the imperfectness of life. Our moments together are not perfect and memorable, and that is okay. We are willing to think about next year and even the year after that. That is very good progress. And if something we planned for the future doesn’t happen, it’s okay. No one event, deed, or trip is going to make or break our time together. It is a culmination of all the years, events, deeds, and trips we have taken. I believe that in the end the small, seemingly insignificant moments are the most important and the ones we cherish the most. Things like cooking dinner together, sleeping next to each other, watching TV, riding in the car. Those things are important, and I often take little snapshots in my head to hopefully remember them better down the road.
To me, living my best life means making positive choices and changes one day at a time, experiencing life one day at a time, forgiving myself for not being perfect, and being okay with things not always being wonderful. That is what I think it means to live like you are dying.