Making Care and Comfort in Sudden Change

After more than a decade of being disabled, I work pretty hard to keep my symptoms as under control as possible through medication, physical therapy and adaptations I make in my home and life. To be clear, I am still disabled, but am grateful to have found some things that ease my symptoms. These adaptations include actively planning my life around interdependent care networks, especially with my partner.

This week, my partner, who normally does all of the dog care and a share of the cooking, cleaning and other general chores that it takes to care for ourselves and our pups, was suddenly unable to walk without tremendous pain. I was doing my usual care work, plus caring for both her and the dogs. Quite honestly, it felt impossible.

It brought me back to when my symptoms were unmanaged and I used to joke “I live here now”. Which meant that I lived in this space of pain and I deserved to feel like I could be at home in my body and my life, even when things were hard. It meant that if I was going to spend days on end in bed, I was going to have the most comfortable, luxurious bed I can.

To still create care in intense times, I have a few questions I ask myself.

What can make this moment even marginally easier? The first morning after Val injured her back I woke up to find her in pain, sitting in her gaming chair. Her mattress was too soft and she didn’t have anywhere to comfortably lie down. At the doctor’s office, she laid on the exam table and said “this is what I need”. I knew we weren’t going to get a real exam table, but I thought about what else could meet that need. Four hours later I had found a folding massage table on Facebook Marketplace and set it up as a comfortable place for her to be. Since she was going to be spending a fair amount of time here, it was important to set it up well with clean sheets, quilts, her heated blanket and other necessities close by. Knowing she can meet many of her own needs, especially in the middle of the night, helps me sleep better too.

How can I ask for what I need? What help could be available to me? There is no way that Val and I would be able to meet our needs on our own and after approximately 12 hours of trying to do just that, we reached out for help. In a society that prioritizes independence over interdependence, we don’t have as much practice recognizing the help we need and asking for it. The first thing Val and I did was think through everything that needed to be done and how we might consolidate/shift what needed to be done. After that, we talked through what I could feasibly do in a day and what I wouldn’t be able to do. We recognized that it wouldn’t make sense for anyone else to do the dog care or supporting Val’s needs throughout the day, but we needed help with meals. We made a meal train and are incredibly lucky to have friends and family locally who can help with that.

Even if I don’t know what to ask for, how can I let people around me know what’s going on? Sometimes, we are so deep in it that we can’t see what we need. People who love you want to help you! I feel so lucky to have my parents close by and to have a great relationship with them, so they were our first call. There were some things, like I shared above that we knew we needed, and some that my parents came and saw we needed. It’s a lot easier to see what needs to be done when you aren’t going through something challenging. Allowing trusting space for people to show up in ways they offer can be so lovely, as long as there is space for you to say no if/when something isn’t helpful.

When I’ve been a challenging spot I have used these questions to make the bad moment to feel somewhat better. The examples above show the first time I asked these questions, but in the week since Val has been almost entirely in bed, I have asked these every day. Sometimes what makes the moment marginally easier is saving a chore for tomorrow. In addition to help with meals, the help I need has also looked like asking people who come by to hang out to empty my dishwasher. Being in this moment of extreme upheaval, being able to hold comfort and care alongside the pain helps me make it through.

If you’re in this place, I hope things ease a little bit for you soon.