We'd recommend a new book in the ODS Resource Collection written by M. Catherine Ray: I'm With You Now: A Guide Through Incurable Illness for Patients, Families and Friends. (Bantam Books, 1997).

We have found Chapter 5 to be particularly helpful -- it's called "Bad Days" (pp. 31-34)

• Any person on this voyage -- either a patient or loved one -- can expect to have bad days. Emotions may shut down, anger may explode, simple tasks seem pointless or impossible, tears won't come, tears won't stop, lethargy or distraction sets in. Sometimes these days are full of angry passion. Other times, the world seems empty, flat -- there is barely enough energy to breathe.
  

• Our emotions and reactions -- or lack of them -- sometimes surprise us even more than they surprise others. When this happens, our most helpful friends look us straight in the eye to state firmly, "You are not going crazy. You are not sinking."
  

• Bad days arrive throughout the process. They do not go away as we grow more accustomed to this journey; they just change with the passing scenery.
  
  A few years ago, after my dad had been sick for several years, an unbelievable thing happened. I actually got two tickets to the Super Bowl. Good tickets, too -- nearly on the 50-yard line. My best friend and I got all settled into our seats and the opening hoopla began. All of a sudden, I felt this rush come over me and I started to bawl. I was thinking about Dad, and all the Super Bowls we'd watched on TV, dreaming how great it would be to see it live one day. And now I was actually there, in person, and he was the one who should have been next to me. But I couldn't even tell him about this -- he has Alzheimer's and he doesn't know me anymore. So here I am, this grown man, sitting on the 50-yard line at the Super Bowl bawling my eyes out. And I'm not one of those quiche-eater guys who cries at the drop of a hat. I could feel people around me looking and wondering -- "What's with this guy?!?" I was mortified. But I just couldn't make myself stop sobbing. And it took me totally by surprise.
  

• Other people sometimes don't know what to do with us when we are having our bad days. They say silly things like, "You have to pull yourself together." But why? To make them more comfortable? Remember, we are not about to drown, even if the people who love us imply that we are.
  

• "Bad" days are actually good days, as the mind and body work to protect and prepare us. We shut down, we emote, we wallow in melancholy and think about the past, present, and future. Eventually, we find perspective and peace. We are healing -- taking this time for ourselves is helpful to us.
  

• We must avoid feeling apologetic about our bad days. Instead, we ought to celebrate them. They are doing us a world of good. Rather than calling them bad days we ought to call them healing days.
  

• Helpful friends understand that only we can make the rules about our healing days. No one else is able to tell us how to feel and act. And while well-intentioned friends may have creative ideas for how to "snap out of this" it is up to us to decide how to best spend our time -- even if that means sitting alone in a dark room, or listening to sad music until we're sobbing, or other behaviors that those around us view as strange or morose.
  
  "We've always had this family ritual," the wife of a cancer patient confided. 'We play music every morning while we get ready for work and school. One morning, my husband put on Linda Ronstadt and Aaron Neville. Well, that lasted about five minutes! 'Cry like a rainstorm' was exactly what I started to do. I changed the music, but it was too late. Everything just crumpled around me.
  
  "I told my husband I knew I wouldn't be in good shape that day -- it felt like too much of a struggle to try to put myself together. I didn't really want to feel better. I just felt like feeling bad. So, I stayed in bed all day. I took about three naps and cried the rest of the time in between.
  
  "Luckily, my husband knew to leave me alone. Oh, he checked on me every once in a while, but he didn't complicate things by fussing over me. And he never made me feel guilty for giving myself a pity party, even though he's the one who's sick! He just trusted me to take care of myself. In a day or two I was lots better. Even pretty refreshed."
  

• There are few things more depressing than being with someone who insists on cheering you up. It adds unnecessary pressure. Explain this to anyone who tells you to "buck up." Kindly ask them to leave you alone until you have moved through the storm. And avoid these people when the next healing day arrives.
  

• Healing days are just one tool -- mostly unconscious -- we use to keep emotional balance. When we feel a bad day coming on, we can either try to squelch it or indulge it. When possible, try to pick the place and limit the damage. It helps to remember we can control our healing days, rather than allowing them to control us.
  

• We need to give ourselves permission to be self-indulgent when these days arrive. It is equally important to pay close attention. Make a conscious note of your specific feelings and physical reactions. Think about what you're doing to cope -- try to discover what seems to help and what doesn't. We need to move our self-indulgence beyond mere pampering; we gain wisdom when we can use these times to collect information about which methods to use when the next healing day arrives.
  

• Try to view these peaks and valleys of passion as one of the gifts of the experience. There are not many moments in life when we can expect to feel things so profoundly, even if that feeling is profound emptiness. If possible, try to take the perspective of being fascinated by these emotions and reactions, even the scary, sad, and futile ones. Pay attention. Because remember...

• We won't always feel this way.

Back to Main FAQ