Self care in difficult places. How do you do it?

Back when we spent extended periods of time with Jessie at Childrens Hospital Boston, it was easy to let go. To make excuses and just overindulge. To say to myself, “You’re under tremendous stress, so don’t worry about what you do to make yourself feel better. Just take the elevator, because time is more important than exercise on the stairs. And the breakfast pastries? Those carbs don’t count right now.”

But those indulgences did count. The cravings, the bad food, the less-than-virtuous habits, the lack of movement … it all added up. And I carried (and still do) the results of that lack of self care even now. I’m still regaining balance.

Now let me clarify, that given the constant crisis in which we often lived, I coped darned well. I only slept a few hours each night, but I was alert and functioning at a very high level. Always “on” …  checking monitors and daily numbers, being Jessie’s companion, working out Jessie’s schedule for the day (coordinating visits with friends for her, organizing therapeutic appointments, negotiating time on/off the IV so she could be more mobile, making a plan with her nurses for any other particularly difficult procedures, scheduling her daily ACE flush, participating in rounds with the oncology and transplant teams … later ICU teams … and any specialists), consulting with a variety of staff members at crazy hours of the day and night, and keeping up with Chris and Sarah either during their visits, calls or remotely (I was still handling Sarah’s schedule and organizing the logistics of her daily life, from a hospital room in Boston, through a network of phone calls among friends). We did a lot from a small room in Boston. But only because we had so many people willing to help. Chris and I were a team. And our community was an extended web of compassionate hearts and hands, willing to make almost anything possible.

Taking care of yourself and each other? Could depend on your definition, I suppose. In a way, when your child is diagnosed with a mortal illness, your sense of power, control and competence is already being put to the test. You can’t make her safe anymore. The disease wasn’t cause by your lack of vigilance, and it won’t be fixed because you pay extra attention now. And yet … you have been dealt a severe blow to your own self-image as a parent and member of a family.

Realistically, although only one body is affected, this kind of trauma happens to everyone. It ripples out and touches, affects, changes all family members … and also friends, peers, community. In my family? I think we all feel like we had cancer, though only Jessie truly did. And if she were here, she’d stomp her foot, raise her voice, and be quite clear that it happened to her body, it was her experience, and not mine. Not dad’s. Not Sarah’s. But in many ways … yes, it happened to all of us. Hurt all of us.

Below are some of the ways we managed self-care even in stressful places and times. Many of them would translate well to virtually any experience in life. Admittedly, it’s easier to dole out wisdom than to act on it … I attempted all of these things, but I was better at some than others, as I’ve admitted earlier in this entry. If you find something helpful on this list, that’s great.

• Walk. Use the stairs. Exercise. The hospital staff used to pass out pedometers, so that parents could measure how many steps they walked. We figured out that several rounds up and down the halls of the hospital, as a parade of patients and parents riding or driving wagons, tricycles, IV poles and plastic cars, totaled a mile or more. (Jane Roper, the mom whose daughter has just completed her first month of treatment for leukemia, made a humorous post about her exercise regimen. It was familiar, I assure you.) Or you could go down to the garden, as Jessie often wanted to do, and run laps. We had a timer and stop watch, because she liked to be clocked for speed. Usually I was timing her, not running, though. Using the stairs? It was an easy way to improve cardiac health. I started, in the last few months of Jessie’s stay, to challenge myself to do this every day. I admit that down was easier than up.

• Eat healthy foods. Homemade food didn’t really exist at the hospital. There was plenty of cafeteria food, and it was fine, but not home-cooked and not always very appealing … the best, healthiest menu item available was the soup from Au Bon Pain restaurant. Otherwise, we always asked for homemade food in containers … Chris would bring a stack of filled Tupperware for us to put in the unit’s refrigerator, slices of all the casseroles and meals that our friends were delivering to the house each week. I tasted a lot of those meals. Now kids on treatment have steroid cravings, or can only eat restricted diets, and sometimes homemade foods won’t work. There were lots of times when we gave up, and let Jessie eat whatever she wanted, but we worked hard to offer healthy alternatives, and not to buy into the “every calorie is a good calorie” mantra we’d been taught early in her treatment. Like us, she had to have healthy eating habits that could translate in and out of the hospital, as much as possible.

• Say yes. When people offer to help, let them. Be specific and express your needs. It empowers others when they can’t actually do anything about the disease, but you give permission for others to “do something” in other ways. It heals everyone. And lets you focus your limited resources and energies where they’re most needed. We went through this journey, as I mentioned above, in the company of hundreds … possibly thousands … of caring souls, starting with our own extended families and our town of Ipswich. Meals. Pet care. Household chores. Rides. Visits. Errands. Childcare. Yard work. There are always so many big and small ways that others can assist … it takes a village to raise a family living with cancer, you might say.

• Find a mental escape. A little every day. Late at night, when Jessie finally went to sleep, was the only time my brain could have “down time,” and I craved that almost more than sleep. I needed to go on a mental vacation. So I’d put on earphones (one side only, so I could listen for Jessie and the monitors, though) and if I was too tired to read a book, I’d watch movies … all of the movies made from Jane Austen’s novels or the Bronte sisters’ works … and the entire JRR Tolkien Lord of the Rings series. Fantasy. Period pieces. Stories so removed from the room where we lived, with beeps and clicks and small flashing red lights and digital numbers counting down, that I was transported away, could escape and unwind a little bit.

• Swap shifts. Take a break. Most families had some variation on this routine; parents would trade roles. One would spend time at home, the other in the hospital, with brief overlapping periods. Some would do a night-day rotation. In our family, I’d do the week shift, Chris would come in and handle the weekend, and I’d go home, spend some time with Sarah, and get the only real sleep of the week. Chris would take a fresh look at the situation in the hospital, and problem-solve whatever he could.

• Sleep. When you can, every day. Naps are good. If Jessie slept, sometimes I did, too. I’d start off in Jessie’s bed, until she was deeply asleep, and then I’d move over to the “parent bed” and attempt to sleep more deeply.

• Counseling. Work on what’s happening. We had a therapeutic relationship counselors. We spoke (or in Jessie’s case, played) with the counselor as often as possible. We also did a lot of role-playing with dolls and stuffed animals. Writing stories or creative art projects.

• Social time. We made play dates or therapeutic sessions for Jessie. Adult friends came down to visit, too. (And the staff were often friends, so you could have plenty of bonding time with them, too. Many of the nurses and a few of the doctors remain good friends even now; they allowed themselves to be more than just medical caregivers. If you think about it, we basically lived with them for extended periods of time.)

• Shower. It helped to scrub away one day’s stress, stand for two minutes under the pounding hot shower, and then feel slightly more alert and a little more pulled together.

• Clean clothes. Chris did loads of laundry and brought them in, exchanging dirty for clean garb … it was possible to do laundry in the hospital, but it was another chore and expense that we handled at home instead. And when the new bag of clean clothes arrived, it smelled like our detergent, our house, our …. Our lives. I developed a “hospital uniform” that was layered for temperature changes (we would travel to different areas that were hot or cold), could stand up to messes (blood or puke, for example), remained comfortable (I was often contorted into weird positions, crawling into bed with Jessie, playing games in odd spaces, etc), felt clean and loose (I hate tight constricting clothes) and forgave my lack of grooming, but made me feel presentable when dealing with teams of professionals who can shower and change into cleaned, laundered and pressed outfits with heels or polished leather. I was lucky if I got to brush my teeth. Jessie had a whole different wardrobe. It was mostly pajamas and some street clothes, all marked by her style. Lots of cute slippers or flipflops. Head gear, scarrves and hats. When she had certain kinds of cardiac catheters, we sought halter-style dresses, pjs and tops, because of how we had to maneuver her arms in and out of clothing.

• Personal grooming. Take a little quiet time. I liked to get away from the hospital room, behind a closed door inside a bathroom to myself for five minutes (on oncology, ICU or transplant, parents shared a few bathrooms, so you couldn’t monopolize it for long). Completed small daily rituals. Brushed my teeth. Shaved armpits. Applied deodorant. Washed my hair if there was time. Changed my socks and undies. Phew.

• Cry. Mostly in the shower. You can weep in private in a shower. Your child or spouse won’t know. And you have to let it out sometime.

• Journaling. Wrote a daily blog entry that I would email to Chris, along with photos if I’d taken any, and that he would post for us. It was a joint effort to maintain the journal every day during Jessie’s treatment. Tried to make some meaning of this experience, and also communicate with everyone who cared about what was happening. Other people did it through scrap-booking, or video journals, Youtube posts, or online journals such as caringbridge or carepages, or MySpace or Facebook, or yes, old-fashioned diaries. In all kinds of ways, the experience was recorded. In addition, we kept a running Daytimer schedule appointment book that was passed back and forth, so that when we handed it to each other, we’d recorded such items as what medications had been given, what doctors had visited, Jessie’s vitals, her temps, if she’d eaten or gone to the bathroom, what she’d had been doing (active, tired, playful, cranky), any memorable quotes, and those sorts of details.

• Communicate. Visits in person. Notes and letters. Pictures. Skyping. Phone calls. Facebook. Staying connected.

• Photography. An amazing tool for family and the patient, too. The lens can be turned toward the experience itself, or pointed outward, away from the body and self, to whatever else draws the eye. The birds in the garden. Other patients. The hospital environment. Details. Also, we put up the prints of loved ones and home where Jessie could see them and visitors could look at them. They can help with visualization. And remind caregivers that this is a real person, a well-rounded family, and they’re only meeting us in one part of our lives, but through photography they can learn more about their patient as a whole person, with other interests and even appearance (like a kid outside on a soccer field with hair, not just bald in pajamas hooked to an IV pole).

• Take a walk. We’d negotiate ten minutes to walk outside in the garden. Or while a nurse or therapist kept Jessie company, because she didn’t usually ever want to be alone in her room, even surrounded by staff, I’d make a quick run for supplies (toiletries from pharmacy, snacks from grocery or new titles and games from the book store). Sometimes I’d stand outside the front entrance to Childrens, ignoring the traffic and the pedestrians, and just lift my face to the sky. You don’t know how important it is to feel any kind of weather on your face … rain, sun, wind, snow … until you’re stuck behind a layers of insulated glass in an environmentally-controlled, filtered-air, cycled-water, colored-lights-in-the-ceiling unit … where nothing is real.

• Caffeine. I wanted to sip chai latte every day. Some people love Dunkin Donuts for its coffee. I drink tea, so I went to Starbucks, because there wasn’t a Zumi’s in Boston.

• Creativity. Sing. Dance. Make a video. Express yourself.

• Pets. Animals are an amazing form of unconditional love and affection, and a safe place to put feelings you don’t share with anyone else. They won’t give away your secrets.

• Create family time. We’d organize visits for the whole family, so Sarah remained connected, as much as possible, to events in the hospital, and Jessie got family time. We’d eat a meal together downstairs (during the periods when Jessie was allowed off the floor or in our room), play video games or board games, take a nap, watch a movie, read a book … just hang out.

• Scream. Jessie had to yell in her bed. We worked on ways to handle rage. We’d close the curtain. She had a “monster” pillowcase on which she’d drawn the “mad monster” and the “happy monster”. She’d flip sides, and pound on the pillow until some of the anger dissipated. Or she’d just yell invectives at the top of her lungs. And why not? What was happening wasn’t okay or fair or anything resembling the childhood that any child might hope for. You can call it a “Book of Job” moment if you want. Other cancer parents have told me stories about throwing rocks at the ocean … hurling missiles at the biggest, most impassive element in their worlds … because it was the closest they could come to screaming and hitting at their Creator (or fate, or providence, or karma, or whatever … depending on faiths).

• Pray. Yes, always. Sometimes the negotiation variety. “If I do this, will you do that?” We’d make lists of what we hoped for, and ask everyone reading the blog to pray for specifics. Good blood counts. Stability. Remission. Healing of infections. And we were sent all kinds of prayers. Stones with words in them. Angels as pins and small objects. Buddhist prayer flags. Quilts. Native American prayer wheel. Tibetan prayer wheel. Cards and mementoes from sacred places known for their healing power. Meditations and mantras. Digital messages with scriptural texts. Visits with our minister Rebecca. Songs. Oh, and all the unspoken prayers that arrived in every bag and box delivered to the hospital … embodied as stuffed animals, books or homemade food.

• Laugh. We learned early about the power of laughter to release tension and restore balance. Another family from Ipswich, whose daughter was treated for non-Hodgkins Lymphoma, told us right away about a website called squirreltales.com and a list of funny observations called “You Know You’re the Parent of a Kid with Cancer when …”  We posted the lists on our hospital room door, and other pediatric cancer families also read them and guffawed out loud. We all understood the bizarre humor. Meanwhile, Jessie was a big fan of playing jokes and pranks. She had a fart machine. She’d draw fake rashes with washable marker. She’d make squirt guns out of clean syringes and shoot water at her nurses. Oh, the fun.

• Seek alternate therapies. The staff used to arrange chair massages for parents. Once a week, if you were lucky, a masseuse would come work out the knots of tension, anger and grief in your neck and shoulders. (It might be the kindest and most intimate touch you experienced in place filled with masks, gloves and gowns.) We also had access to reiki, which didn’t require touch, and was safer for patients to use, too. And then there’s simpler therapy, like doing manicures. Believe it or not, that used to be a very helpful pastime for parents and patients alike. Except you have to leave one fingernail unpainted, so they can hook up one of the monitors that clips to your finger and reads vitals through your nail (I think it was O2 saturation, but blessedly, it’s been long enough that I don’t really remember, and I’m not going to research it for this blog). And yoga.

• Know you’re not alone. It was humbling to realize that we were surrounded by other families also on the same journey. When you look outside your own door, or even peek around the curtain in a shared hospital room, you learn that this story has many variations and many outcomes. And you have a whole lot of companions, people you’d never meet any other way, who share this common experience and can understand it from the inside out, and may even have more wisdom or tips for how to cope. And as mentioned earlier, you also have friends and family participating, as much as possible, in this journey. And staff, who also become like family along the way. You really have a whole lot of support and community available. (I hope others also find this true, anyway.)

Okay, here’s a confession. I also had “drinking” on this list. As in, adult beverages. Margaritas. A beer. Social chances to unwind. But then I decided that was never a self care habit; it was more along the lines of eating too many carbs and making excuses. Not when you’re run down and strung out. So I can’t recommend it as a responsible therapeutic step. Even if it’s soothing.

The truth is, we also cope by indulging. Becoming childlike in our activities. We play video games. Eat sugary or salty foods. Misbehave in many ways. And that’s okay. That’s human, and it’s part of what happens in stressful times. It’s just good to find equilibrium, and use those other resources listed above to maintain some healthy counterbalance in life, and not tip so far over into any unsafe, destructive choices, that you can’t be a responsible, competent caregiver to your family or yourself.