In other words, I’m learning not to take symptoms personally. Inspired by a teaching from the Buddha, I consciously practice this by treating how I’m feeling at any given moment as being the result of the temporary coming together of causes and conditions in my life that are almost always out of my control. To do this, I intentionally omit self-referential terms, such as “I,” “me,” and “mine” from my thinking. After all, when causes and conditions come together to create aches and pains in my body, it’s not as if I, Toni Bernhard, intentionally ordered up these unpleasant physical sensations!
It’s the same with any symptoms that accompany chronic illness. Thinking of them as “me” or “mine” makes us feel as if we’re responsible for their presence. The skillful and compassionate alternative is to regard fluctuating symptoms as part of the uncertainty and unpredictability that is inherent in all of life.
Here’s an example of how this practice works. When pain is present, instead of thinking “I’m in miserable pain,” I purposefully omit “I’m” and change the thought to “Pain is present” or “Pain is happening.” I also use this practice with the stressful emotions that often accompany physical discomfort. And so, instead of thinking “I’m anxious about how long this pain will last,” I purposefully omit “I’m” and change the thought to “Anxiety is present” or “Anxiety is happening.” Same with frustration: “Frustration is present” or “Frustration is happening.”
When I change the description of my experience in this way, it’s easier to accept the uncertainty and unpredictability of how I’ll feel on any particular day or at any given moment. This helps me to not take personally either physical discomfort or the stressful emotions that can accompany it. Instead, I regard them both as having arisen as the result of causes and conditions that happen to be present at this point in time.
I hope you’ll try this. Taking self-referential terms out of the description of how you’re feeling, physically and emotionally, can help you cope better “with the unpredictability of life as it unfolds,” as Pema Chödrön put it. Pain is just happening. Deep-seated fatigue is just happening. Heart palpitations are just happening. Frustration is just happening. Anxiety is just happening. None of this need be taken personally. It’s just how life is for you at the moment.
With your mind feeling more at ease from this practice, you can shift your focus to the peaceful abiding of equanimity, which means accepting as best you can that life will always be uncertain: these are the physical symptoms and the mind states that are present right now, and you can’t predict what the next moment might bring. No one can.
Uncertainty about what social commitments to make.
Not overcommitting ourselves while also not unnecessarily isolating ourselves from others is a delicate balancing act. These mental gymnastics can be exhausting for us. For me, they begin as soon as someone asks if he or she can come over for a visit. If I say yes, how do I know I’ll be well enough to keep the commitment when the day arrives? This tips the scales in favor of saying no, so that I don’t have to cancel on short notice. On the other hand, if I say no and then feel well enough to visit on that day, I’ve passed up the opportunity to be in the good company of another person. Managing chronic illness is hard — and often exhausting — work.
In the end, when the opportunity to socialize arises, each of us has to decide what to do, based on our mindful assessment of how we’re feeling. We should then resolve not to blame ourselves if it turns out we made the wrong choice; that’s self-compassion in action. In my case, because I never have a day when I don’t feel sick, I tend to choose the safe alternative and decline the offer of a visit, even though this may mean that I’m more isolated than I need be.
And what about a social commitment that would have too many negative ramifications were we to cancel? If I’m feeling particularly sick on a day when this is the case, I find it helpful to say to myself, “Whether you feel your usual sick self or your extra sick self, this is something you have to do, so do it as graciously and with as little complaining as possible.”
Uncertainty about how others will treat us.
We’re never sure how family and friends — and, of course, doctors — will react to our illness and to our pain. I’ve experienced both extremes: people pulling away from me in aversion and others embracing me with compassion. It also feels as if I’ve experienced everything in between. I’ve had people talk to me as if I’m a child. I’ve had people speak to me in a pitying voice. I’ve had people drill me with questions about my illness as if I’m on the witness stand. I’ve had others speak to me with genuine concern. I’ve had people utter those most welcomed words: “I’m sorry you’re sick.”
Uncertainty about how people might treat me used to give rise to such severe stress that, before seeing someone, my heart would begin to race and my face would get flushed. I’ve learned, however, that even well-intentioned people often behave unskillfully. Our culture does a poor job of teaching people about chronic illness. Recognizing that unskilled speech is usually the result of ignorance on the part of the speaker helps me not to take his or her behavior personally.
I’ve found that the best way to handle uncertainty about how people will react to my chronic condition is to put aside my expectations and keep what I referred to in chapter 21 as a “Don’t-Know Mind.” I don’t expect people to understand… and I don’t expect people not to understand. I just hope for the best, and I try to respond to them as honestly and as graciously as I can under the circumstances.
Uncertainty about how much help we should ask for.
A few years ago, my husband was making plans to leave town for two weeks. He asked me what he should stock up on from the grocery store. I told him not to bother because I was feeling well enough to go to the store myself. Unfortunately, I’d forgotten how much energy it takes to do the household tasks that he handles when he’s at home. As a result, I wasn’t well enough to go to the store. For five days, the only veggie I ate was spinach. Then my neighbor Nadine learned from one of my Facebook posts that I was home alone. She asked if I’d like her to go to the store for me. Needless to say, I jumped at her kind offer.
Because our ability to do things for ourselves on any given day is uncertain and unpredictable, it’s hard to know how much help to line up ahead of time. We don’t want to burden family and friends with tasks if we can do them ourselves, especially because most of us value our independence. On the other hand, neither do we want our cupboards to be bare because we overestimated how much we could do for ourselves.
Uncertainty about how we’ll react to a routine medical procedure.
Whether healthy or not, no one looks forward to getting a root canal. Then there’s that lovely procedure known as the colonoscopy. At least people in good health have a decent idea of what side effects to expect. For the chronically ill, however, a routine procedure can trigger a flare in symptoms that may take days or weeks to recover from.
This unpredictability about how we’ll react to medical procedures can have serious consequences. I know I’m not alone among the chronically ill in putting off routine procedures because I’m uncertain about how I’ll react to them. The only one I’m diligent about is the colonoscopy because my mother had colon cancer. Fear trumps uncertainty in that instance.
I’ve learned that the best way to handle a colonoscopy, or any procedure I’m concerned about, is to acknowledge with compassion for myself the stress I’m feeling. I also remind myself that this is important self-care — important for maintaining what I think of as “wellness within illness.”
(Note to self: must stop cancelling and rescheduling — over and over again — those routine dental cleanings.)
Uncertainty about our ability to handle an emergency.
Uncertainty about how I’ll be able to cope in an emergency is one of the most stressful challenges I’ve faced since becoming ill in 2001. At times it’s given rise to intense worry and fear. I particularly agonize over what would happen sh
ould my own caregiver need a caregiver.
In April of 2013, I had a taste of what would happen in an emergency. I learned from the experience that, although I have the ability to step up in the short term if I need to, there’s a limit to how long I can sustain that type of behavior.
One morning, my husband had a severe allergic reaction (probably to something he ate). When the reaction set in, I drove him to the emergency room, which is about ten minutes from our house. Once we got there, I sat by his bed as they hooked him up to an IV and put an oxygen mask on him. Then I waited as he lay there, barely conscious and unable to communicate with me.
In addition to being worried about him, I was concerned about the limitations imposed by my illness. With great effort, I can manage to sit in a chair for about two hours before I feel as if I’m going to keel over. As I sat there, I had no idea what time frame we were looking at. Would we be there for an hour or for six hours? (It turned out to be the latter.)
After two hours, I could barely sit upright in the chair. I told the nurse that I suffered from a chronic illness and needed to lie down for a short time. She politely told me that I should go home and call them in a couple of hours to see how my husband was doing. No way! I wasn’t going to leave him alone when he’d yet to respond to treatment. Not knowing what else to do, I called our friend Richard. When he arrived, I left him in the room with my husband and went out to our van to lie down for a while.
As I lay there, I felt as if my life had come to a sorry state. Here I was, in a parking lot, lying on our dog’s hair-covered and not-so-fragrant blanket, pulling whatever I could find over me in order to keep warm (including newspapers), using my lumpy purse as a pillow. When I returned to the ER, my husband had his eyes open and was no longer disoriented. After another two hours, they discharged him, and I drove us home.
Once I felt confident that he’d be okay, I became acutely aware that this emergency room adventure had brought my limitations into sharp focus. What if I needed to be at his bedside in the hospital for days at a time? What if he developed a chronic medical problem and needed a caregiver of his own to take over the household tasks? Should I even be spending time fretting about events that may never materialize?
Since that day in 2013, I’ve thought a lot about what I can and cannot handle in an emergency. I’m trying to walk a middle path. On the one hand, I don’t want to ruin my present-moment experience by spending all my time worrying about my ability to handle an emergency; after all, an event like this may never happen again. On the other hand, I realize that it’s important for me and my husband to plan for some very real possibilities that could be beyond my ability to manage.
Living at ease with life’s uncertainty is difficult enough without the added challenge of chronic illness. Will we ever be able to do the things we treasured so much before we got sick? Will the people we meet treat us with understanding and compassion? What does the future hold? We just don’t know.
Since uncertainty is an inevitable part of the human experience, the quality of our lives will improve dramatically if we can find a way to make peace with it. When I awake each morning, I try to remember to reflect on how I can’t know what the day has in store for me, especially with regard to my health. Then I set the intention to greet it nonetheless with as much caring attention, compassion, and open-hearted curiosity as I can muster. I hope you’ll do the same.
25
Taking Care of the Caregivers
The most precious gift we can offer anyone is our presence. When our mindfulness embraces those we love, they will bloom like flowers.
— THICH NHAT HANH
MY CAREGIVER has had a front-row seat for chronic illness since 2001. But I’ve had a front-row seat too: watching the life of the caregiver. I’ve learned that the difficulties he faces are as great as mine, although he might not agree with me.
In the study “Quality of Life: Impact of Chronic Illness on the Partner,” published in the Journal of the Royal Society of Medicine in November 2001, the authors reported:
The most striking research finding is a tendency for the partner’s quality of life to be worse than that of the patient.
Although the study focused on partners and spouses, I expect that its findings would be similar when the relationship of caregiver and cared-for person is parent/child, child/parent, sibling/sibling, or a host of other relationships. I know three parents who are caregivers for chronically ill young children. There’s no doubt that these parents’ quality of life has suffered, partly due to their extra responsibilities (which includes making sure their children get a proper education) and partly because of their ongoing worries about how their children will fare physically, emotionally, and socially. The need to care for a child can also impact their ability to climb the career ladder or even force them to give up their careers altogether.
This chapter offers suggestions for taking care of caregivers. It focuses on caregivers who are spouses or partners, but it applies to anyone who is taking care of a loved one. I’ll begin with how the person who is being cared for can help. Then I’ll cover how family members and friends can help. A theme that runs throughout the chapter is that the best way to take care of caregivers is to give them your loving and caring attention.
If You’re the One Being Cared For
Talk with your caregiver about what’s reasonable for him or her to do for you, what you can do for yourself, and what you both need help with.
Most caregivers have commitments that aren’t related to their caregiving duties. Their most crucial commitment may be holding down a job in order to support the family. That alone can take up most of their day. Taking into consideration these noncaregiving responsibilities, have a heart-to-heart talk with your caregiver about what he or she can reasonably do for you.
If you don’t have this conversation, your caregiver is likely to think that he or she has to do everything. This can quickly lead to caregiver burnout and even to clinical depression; both of these are common consequences of being overwhelmed as a caregiver. Taking on too much responsibility can also compromise your caregiver’s physical health.
Once you’ve agreed on what’s reasonable for your caregiver to do for you, talk about what you can usually do for yourself and also about who you’d be comfortable turning to for help with other tasks. In our household, my husband takes care of the finances, and he does the shopping, the cooking, the dishes, and his own laundry. In addition, he runs all the errands and takes care of car maintenance. Oh, and he’s my computer help desk.
On my end, I wash my own clothes, feed the dog, and try to keep the house from getting too cluttered. I also arrange for people to come over when something in the house needs repairing or replacing and when the yard needs special maintenance, such as tree trimming. Then, when they come to the house, if at all possible, I handle the interactions. Sometimes this takes me beyond my limits (especially if they’re chatty!) and, as a result, my symptoms flare. I do it anyway because I want to protect my husband from caregiver burnout.
Once you and your caregiver have decided what the two of you can reasonably handle, you’ll be in a position to assess what kind of help you’ll need from others. I sometimes need a ride to a doctor’s or lab appointment. My husband sometimes needs a friend to come with him on a two-person errand, as he did when he picked up our new puppy, who was on a ranch that’s a two-and-a-half-hour drive from where we live.
To brush up on your “asking for help” skills, I suggest you review chapter 3, “Asking for Help Can Be Your Gift to Others.” Many of us have been taught that it’s a sign of weakness to ask for help. It’s not. When someone asks for my help, I’ve never thought, “Oh, she’s weak!” In addition, we tend to assume that if people wanted to help, they’d have come forward and offered. It took several years for me to realize that people wanted to lend a hand but needed to be asked. Once asked, they jumped at the opportunity.
Find ways to preserve your pre-illness relationship.
&n
bsp; Think about what you and your caregiver have enjoyed in the past about being in each other’s company. This is a mindfulness practice. Take some time to consciously pay attention to what made your relationship “tick.” Then make a commitment to nourish that part of the relationship. Doing this can improve both your and your caregiver’s quality of life.
Perhaps you loved laughing together. If so, think about how you can do that in a way that doesn’t push you beyond your limitations. Maybe you can’t go to a comedy club, but you could watch your favorite stand-up comedians in concert on a television or computer screen.
Sometimes my husband and I play Scrabble with each other on our computers. He sits on the bed next to me while I’m lying down. We each have the Scrabble game open on our laptops. When he plays his letters, there’s a slight pause and then an audible “ping” as his move pops up on my computer. It may seem as if this lacks the personal connection of sitting opposite each other over a Scrabble board, but it doesn’t. For us, online Scrabble is as enjoyable as the traditional way of playing, and it’s the only way we can play because I can’t sit upright at a table long enough to complete a game.
Perhaps you and your caregiver liked to talk about certain subjects: politics, for instance, or your spiritual life. Pick the time of day when you have the most energy and try to engage your caregiver in a lively conversation.
Preserving the relationship you had with your caregiver before you became chronically ill may require careful planning. It’s worth the effort, though, because it provides the opportunity to do something emotionally nourishing and enjoyable for both of you. Perhaps the best reward for your effort will be that you’ll finally be doing something together that has nothing to do with the state of your health!
Encourage your caregiver to do things without you.
How to Live Well with Chronic Pain and Illness Page 15