I am currently sitting in my living room in a mask while two people clean our house. It feels weird to us to have cleaners, but cleaning is one of those things that I’m not allowed to do right now. It’s one thing on a sizable list.

We got a really good report at last week’s checkup. My numbers are right where they need to and most are better. My energy levels are good, weight is stable, side effects minimal. My nurse was “thrilled” and said I was doing “very very very very well — better than 99% of her patients at this stage”. She said a lot of people at this stage were still coming to their appointments in wheelchairs, and I am going up and down stairs, doing laundry. I’ve walked a mile twice. We left feeling really good.

We also left with a modified list of restrictions. Restrictions are so confusing and frustrating at this point. Some restrictions are from my body. For instance, I sometimes have to take breaks while trying to do the everyday things I attempt. Some restrictions are based on counts, like not being around cleaning supplies or plants. I’m allowed to go to the grocery store but I have to take a mask. I might be able to drive again soon. We’ve had to halt all remodeling work because I can’t be around dust. Some days I get out of bed and fall asleep on the couch, so the whole day is restricted. I often have to email my nurse, subject line “Can I…?”.

Things feel hijacked. I was so healthy, we had so many plans and we were doing so much, and now I can barely make coffee in the morning. I’m not angry about the injustice of it (mostly), but I am…over it. I’ve been stuck mostly sitting, resting, restricted for over a month now. I’ve had to figure out what life is like when you can’t do even basic things. Thankfully, the weather has cooperated and has left me with very little desire to venture out. 34 degrees and rain? I will stay here, thank you.

There is a whole world of people who share this life. Lives hijacked by bodies and circumstances that didn’t go as planned. The thing about going through a difficult time is that you often meet people who have been or are on that road. People greet you there and say “I see you, it’s ok”. I’ve met some wonderful and strong people.

Just when I need it I tend to get messages, cards, little surprises from people. This week has been no exception. We ended last night with a kind, thoughtful letter and we started today with a little surprise on our porch. I haven’t left the house in weeks, but people are still reaching out and connecting with us. Lifelines to the outside world. Blips of light. The world feels especially dark right now, but these blips of light are so encouraging. They remind me that we are all going to be ok, no matter what roads we find ourselves on. We won’t be there alone.

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