When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after all these years, I forget that his life has been impacted as much as mine by my health limitations. This is partly because he’s changed his major task in life to that of caregiver and partly because we can no longer do most of the things we liked to do together. So this piece on “things missed” applies to caregivers and loved ones too.

Two notes before I share my list. First, I’m trying to keep a non-complaining tone as I write. Complaining does me no good. These are factual observations and I hope they come across that way. Second, it’s good to remember that there’s a tendency to rewrite our past and put it on a pedestal: “Those were the good old days.” But, in reality, my life before I got sick was a mixture of pleasant and unpleasant experiences, good times and rough times. For example, you’ll see “Leisurely Walks” on the list of what I miss. But taking a walk when the mosquitoes were biting or when it was over 100 degrees in the shade…that I don’t miss!

1. Spontaneity

My guess is that this is #1 on most of your lists.

If people unexpectedly call and say they’re in town and would like to come over for a bit, whether I can visit depends on the timing. I can’t get through the day without a nap…and by evening I’m not functional. Sometimes when people do come over, as they arrive, I find myself rushing off to the bedroom, as if I’m hiding out from them. Hiding out from people I want to see can be emotionally wrenching. Our house is small enough that, once I’m in the bedroom, at least I can lie on the bed and listen to everyone talking so long as I leave the door open. But that can be frustrating and painful when the conversation turns to something I’d like to participate in.

Then there’s the lack of spontaneity to be able to do something on the spur-of-the-moment; this definitely impacts my husband. It might be going out to dinner. It might be going to a movie. Spur-of-the-moment rarely works for me. I need to plan in advance so I can get in as much rest as possilble.

2. Variety

I know how fortunate I am to live in a comfortable house with a loving partner, but the fact is, every day is much the same for me and, some days, that “sameness” can get me down. I particularly miss the variety that comes from seeing different people. I loved to sit at restaurant or in the park and watch the people around me. Now I pretty much see the same people every day.

3. Being actively involved in the life of my family

I have two granddaughters. I miss going to events at their schools and to recitals and the like. But mostly, I wish I could take them on little outings. A month ago, my husband took the hour drive to our granddaughter’s house for the sole purpose of taking her across the Bay Bridge to ride a cable car in San Francisco. How I wish I could have gone too.

4. Socializing 

I’ve found that a partner doesn’t get invited over to dinner when the other partner is chronically ill. Were my husband single, we feel certain he’d get those invitations. I don’t judge others negatively over this because I recognize that they may think he wouldn’t want to come alone, or they may feel uncomfortable about leaving me out. But the fact remains: he has almost as limited a social life as I do.

What I miss most about socializing is something I wouldn’t have predicted. I wrote about it in my book, How to Be Sick: I miss those moments after a party when my husband and I would “debrief” each other about what transpired—gossipy though it might be. Who drank too much. Who was such a kick to talk to. Who we might want to invite over. Who we’d be happy never to see again! Now we do that kind of sharing over characters that show up on our TV. Really!

5. Leisurely walks

I loved to walk the paths at University of California—Davis’ Arboretum. I knew almost every plant and tree and how they look during each season. I loved to watch the birds and turtles along the sides of the creek. I’d go walking there even in the pouring rain. I had a big umbrella and special shoes for the occasion.

6. Engaging in favorite activities

One of my favorite pastimes was birdwatching. I had a little journal in which I recorded each sighting: the place, the day and time, the type of bird. I still bird watch but my sightings are pretty much limited to what I see from the house: white-crowned sparrows and house finches in winter; doves and robins in spring; a quick fly through of cedar waxwings if I can catch them; scrub jays and the occasional mockingbird year-around. Sometimes I long to go to the ocean to see shorebirds again.

7. Doing things around the house

One of my favorite household pleasures was painting rooms. (Perhaps this was a holdover from my days as an undergrad in college when I painted houses in the summer.) I’d paint a room one color and then…paint it another one whenever I wanted to. Now I’m in a bedroom that badly needs painting (as well as a new rug), but I haven’t the ability to do what needs to be done for the preparation and then the disruption.

8. Health not being on my mind all the time

I miss not thinking about it and I miss not talking about

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