What chronic pain and illness make me miss the most

When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after twelve years of illness, 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 list applies to caregivers and loved ones too.

Two preliminary notes. 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 tough times. For example, you’ll see “Time in Nature” on my list of what I miss most. But being outdoors when the mosquitoes were biting or when it was over 100 degrees (F) in the shade…that I don’t miss!

1. The ability to be spontaneous. My guess is that this is #1 on most people’s lists. Having to painstakingly plan everything out is not particularly fun. Having to then impose it on others is never fun. A few months ago my brother and sister-in-law drove from about an hour away to have dinner with us. But we couldn’t just say, “Come in the afternoon and we’ll visit and then eat a leisurely dinner,” because that won’t work for me. If I visit in the afternoon, I won’t be able to join them for dinner. And if they only come for dinner, it had better be an early one because I turn into a pumpkin at about 7:00. So they came at 4:30 and we ate dinner at 5:30. It was great to see them, but there was nothing spontaneous about the occasion—at least not to me.

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 then there’s that turning into a pumpkin in the evening that I referred to. Sometimes when 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, and this definitely impacts my husband. “Wow. Lincoln is playing in town. I’d love to see it!” But then comes the dose-of-reality voice in my mind: “Nice idea but it’s 2 1/2 hours long, so with the previews and ads, that’s closing in on three hours—much longer than you can sit up for. When you face that kind of wait at a doctor’s office, you have to ask for a room to lie down in. Must let Lincoln go I’m afraid.”

2. Variety. They say variety is the spice of life. My spice rack is pretty empty. I’m not complaining. It’s just the way things are. 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. My husband and I don’t even have the questionable luxury of dealing with variety in my health issues! Conversations between us about my health are always the same since it’s remained almost unchanged for a dozen years.

I miss the variety that comes from seeing different people. As a teacher, I used to stare out over a sea of as many as 100 different faces at one time. And when I wasn’t in the classroom, I was a people watcher. Sometimes at restaurants I’d imagine a “back story” to the lives of those I’d be watching. Now I pretty much see the same people every day…and I know their back stories!

3. Being actively involved in the life of my family. My children are grown but 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.

That’s what I miss.

4. Socializing. The peak hours for socializing coincide with when I’m “down”—noontime (I’m napping) and evenings (I’m that pumpkin). And we’ve found that a partner doesn’t get invited over to dinner when the other partner is sick. Were my husband single, we feel certain he’d get those invitations. We don’t judge others negatively over this because we 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 this in my book How to Be Sick: I miss those moments afterward when my husband and I would “debrief” each other about what transpired at a gathering—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. Time in nature. Some of you may miss the wilderness. My time in nature was more “tamed.” I spent a lot of time at University of California—Davis’ Arboretum. It sits next to the law school building where I worked, and I walked the paths that line its creek almost every day. I knew almost every plant and tree and how they look during each of the four seasons. I knew where the little green heron would be watching for fish and where the turtles would be sunning themselves on the banks of the creek. I didn’t miss my walk even if it was pouring rain. I had a big umbrella and special shoes for the occasion.

6. The ability to pursue my former interests. Perhaps you were an active outdoors person or an avid moviegoer or politically active. One of my favorite pastimes was bird-watching. I had a little journal in which I recorded each sighting: the place, the day and time, the type of bird. From a friend who was an expert birder, I learned that the best way to identify a bird was to look for and then memorize some unusual feature. I’d do that and then when I’d get home, look in one of my many bird books and, with that feature in mind, identify the bird. If I couldn’t find it, it went down in my journal as an LBJ, a designation taught to me by another birder friend: Little Brown Job. I still bird watch but my sightings are pretty much limited to what I see from the house: house finches and white-crowned sparrows 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.

Scrub jays are so common in California’s Central Valley (we call them scrubbers) that I forget just how stunning they are. Sometimes, I pretend that I’ve never seen one before, making it a rare sighting. When I do, I’m amazed at the incredible beauty of this bird with its iridescent bright blue and silver coloring. Never mind that its squawking can drive a person to drink (if I drank…)

7. The ability to putter around the house, engaging in pleasurable tasks. I loved to garden. Now, I occasionally transplant something. But most of my gardening is confined to pulling weeds because they’re what inevitably stare at me when I go outside.

I also loved to paint rooms. (Perhaps this was a holdover from my days as an undergrad in college when I painted houses in the summer.) This was one of my joys as a homeowner: paint a room one color and then…paint it another! 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. The rug can be replaced…but can I handle being displaced? We’re considering it.

8. Health not being the topic of conversation. I miss not having my health be the elephant in the room whenever I’m around other people. Invariably (and often due to my own tendency to “drift” in that direction), the conversation turns to my health. I miss not thinking about it and I miss not talking about it.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • Wy Woods Harris

    This is an eye opening article that I will share in my “Ministering to the Acute and Chronically Ill” Sessions.

  • Karen

    I am not the patient but the caregiver for my 76 year old husband who was diagnosed with a basically inoperable brain tumor 15 years ago. We have experienced every emotion and disappointment referred to in this article. Sometimes, life is not easy!

  • Maura69

    Wow, this really hit home! I was diagnosed with breast cancer first in 1985 and then in 1996 with a mastectomy. It had metastasized to the chest wall.Needless to say I had a very hard time and my husband and family did well for the short time. When I went into a coma in 2005, (not expected to live) my husband found a girlfriend. I came out of the coma after 33 days, (thanks to my daughter who brought me home instead of a convalescent hospital). It took me all of 2006 to regain some of what I lost but not my husband who after 40 years was unable to look at me. In 2007 I began a series of reconstructive and plastic surgeries with excellent results (8 different procedures). I am single now and happy (?) but my illness has not totally left me. My back & legs are horrible and at times I can hardly walk – so I go to the gym every day and do whatever I am able. This has not helped my family situation tho, my daughter, grandkids and great grandchildren hardly ever include me. I am unable to walk any, even a short distance. Baseball, football, basket ball games I never know about until they are over, never receive phone calls and when I call they are always so busy…I am not feeling sorry for myself but at times it does bother me so I have a new set of friends and I do pretty well but the frustration of knowing what I had for 40+ years is completely gone is sometimes overwhelming. As they say, “life does go on”. Thank you for your article, it really tells it just how it is! Thank you and God Bless!

  • ButDoctorIHatePink

    This is right on the money. I have metastatic breast cancer to the liver, and have been doing chemo for 3 1/2 years now. I don’t complain either, I’m sort of an “it is what it is” person and when I look out and see a sunset or a rose blooming (cliche though it may be), I am very happy I’m still around to see them.

    But my life is very much diminished. It is hard for people to understand that I can’t just jump in the car and go for a 3 hour drive, and the thought of a 7 hour plane ride is excruciating, not to mention the extra things I’d need if I could take a vacation. And, not being able to clean the house means that I, formerly anal, have a hard time with people dropping by and seeing the dust bunnies that roll around as the door opens.

    I have a child at home still and missing many of the things he does saddens me greatly, such as a national competition on the other coast. Sleep is not a pleasure, it is a necessity, constantly tugging on me, until I give in.

    And, of course, people knowing that I am dying (sooner or later, but hopefully later) means they have unusual reactions around me. Many have dropped me, many are over-solicitous, but it is never just plain fun anymore, at least until the awkwardness is over and it is up to me make it okay.

    I’m very glad I’m alive and I hope to remain that way, despite the odds, for a while, But my life is not normal, by any means. And it never will be again. And while I don’t complain, I do miss it.

  • Robert Berberick

    I am a caregiver for my wife of 22 years. She had two brain tumors. Glioblastoma Multiform Phase 4. She is fighting hard. An extremely strong woman. One of the most positive attitude people anyone could meet. She had surgery to remove most the biggest Tumor on 2/1/13 Other was not big enough to remove. This has effected every aspect of our lives. But we keep plugging along. How our lives have changed. Today is 6/7/13

  • June Bensinger

    I have CMT1B. Affected my life since birth but only diagnosed at age 65….now progressing rapidly. Tho I could do most anything ordinary(with a little extra effort) until age 65 (now 78), the thing I now miss the most is being able to take walks, walking a dog, gardening and traveling. I just miss walking most of all…………even around the house and yard.