Some times I think the most valuable thing MS has taken from me is any sense of expectations. It has always seemed easy to play the odds with a sort of internal risk management style. What could I lose versus what could I win ruled my thought process even if it wasn’t explicitly said or thought.
Along came MS. For the first few years, it was simply survival mode with every day seeming to bring new challenges with precious few bringing opportunities I recognized. What a miserable couple of years. Heck, this blog suffered it’s first death for my lack of desire to remember the thoughts of the years. When I think back on the first few years, it’s mostly memories of not being there because of hospital trips, puking, dropping everything, and shit in my pants at work. Everyday brought a waking up and taking stock of what was working today. I couldn’t predict what would go wrong next.
Then came Tysabri,and the choice to take a med with a small chance to kill me versus living like I was seemed a no brainer (bad pun). Five years later, I have been stable for long enough to somewhat get back into a shape other than round and squishy. However, I still find myself with symptoms progressing. Pain is getting worse, and my mental mistakes are legion when tired. Heck J doesn’t even want to take a break for a weekend because she fears I will make too many mistakes or just one bad one. Who am I to second guess?
Add onto this guess work, uncertainty of what taking Tysabri for a decade or two will do to my body. I have now had roughly 75 infusions. There are no studies on people who have taken it for this long. I am part of the test population who will be in the stats to tell future patients the effects it may have. As if the uncertainty of MS wasn’t enough…
This all makes the choice we have of whether to adopt K even harder. When asked, I have to admit I don’t know how much longer I will be able to work. As I try to run scenarios in my head, the median answer I come to is about 15. I want it to be another 25, and I fear it will be about 4 or 5. So the expectation is 15. What kind of position would that put our family? How will J take care of all of us? Is it fair to expect her to still have any sanity?
Still, there is a side of me which asks the questions, if not us then who? At some point, one is given enough gifts to make a winning situation. One has to then ask if not now, if not this, then for what is one working or waiting? In poker terms, this would be the big blind special (another bad pun for a practically blind K). We flopped our way into a full house of wonderful children over crazy parents. If not for this, why do we keep trying. There are some hands which seem so likely to come up short, but the possible rewards make throwing them in so unappealing. When are odds not the best reasons to make decisions? Of course one could argue risk management is also about the risk for things working out. Not all risks are bad, and getting a proper feeling for what real odds are versus wishful thinking is very difficult.
I think that’s where we are now, trying to decide how best to live. Maybe the life well lived has morphed. When I first thought of the phrase it was how I would wish my biography to be titled. Then it was a wish for my kids, but over time, it’s become a phrase I hope describes our life as a family.