Heroes Everyday: Living With Chronic Illness

Imagine waking up in pain pretty much every day, and then chasing pain the rest of the day. What would it be like to lose your ability to do activities that you have always enjoyed, like handling tasks independently around your home, driving yourself places, traveling, or making plans with friends and family? What if you had a chronic, progressive health condition, and your schedule is full of medical tests, doctor's appointments, IV infusion, multiple surgeries, and it's a bit tough to know if you are going to feel well enough to do what you planned for tomorrow?

I know some everyday heroes that are trying to live well despite serious, progressive, and life-threatening illness. I bet you do, too. When I worked for a hospital counseling department, my fellow counselors and I took turns leading the hospital's Parkinson's disease support group, arthritis support group, cancer support group, and Alzheimer's support group. I also did home visits to counsel patients who were confined to home with advanced conditions like COPD, late stage ALS (Lou Gehrig's disease), advanced MS, advanced autoimmune disease, and end stage cancer. What an education in bravery it was for me to walk alongside such courageous people.

I used an exercise I especially loved to teach people about what it is like to age and develop a serious or life-threatening illness. We simulated loss. I had each participant write down on scraps of paper 4 favorite activities, 4 loved people, 4 cherished possessions, and 4 physical characteristics they each liked about themselves. Afterward, I circled the room with a small trash basket, and each time I did so, each person had to tear up and throw away one slip of paper from each category. This action symbolized the multiple losses that people go through as they age, and especially as they deal with serious, progressive illness. Next, I would check in with participants for their reactions as they had to give things up. There were profound feelings of loss, sadness, longing, isolation, anger, frustration, resignation, hopelessness, and detachment. All of these feelings are normal responses to the multiple layers of loss that people experience in facing chronic illness.

Progressive illnesses that are treatable, but not yet curable, mean experiencing one journey of grief after the diagnosis, and then recurrent cycles of the grief journey as the individual, and their family, adjusts each time there is further progression of the illness. Each step downward in mobility and activity means another adjustment. You can be accepting emotionally of your chronic illness,and then be hit hard by the next advancement of the disease which dares to take a bit more of your freedom and ability to enjoy life. Then there is a new adjustment to make.

What helps these everyday heroes who live facing pain and challenge everyday?

1. Keep the stress level as low as possible. Stress exacerbates difficulties with chronic illness. This family member can no longer be burdened with being a shock absorber for the emotional or life problems of family and friends. Set boundaries with toxic and negative people who increase your stress. You simply aren't up for it, and you must protect yourself.

2. Stay as active as you can, as long as you can. This is a good way to channel some healthy anger about the illness. Check with your doctors about what kinds of things you can do everyday. Can you walk down the block every day? Can you do some seated stretches? It can be helpful to have small daily goals that remind you that you are doing what you can to help yourself.

3. Seek out support. Often a big parade of support comes right after a new diagnosis, but dwindles later. One of my longtime patients has had so many surgeries for her condition that she is hesitant to tell anyone. Support groups can be helpful and informative, with other people who have your same condition sharing coping strategies, information about medical advances, and understanding. It can make you feel less isolated. Supportive counseling will also help, so that you can work out your feelings and get help in adapting.

4. Ask your doctor for help with pain management. Speak up and advocate for yourself if you aren't able to sleep, can't manage the pain, or have other symptoms that overwhelm you.

5. Ask others for help. There will be tasks you can no longer do safely or comfortably. Adjust to being okay allowing others who are close to feel good about helping you. Maybe your teenage grandchild can bring in the trash cans, change a high light bulb, walk your dog, or do some errands for you. This reminds me of a children's book I like which tells us "we love what we care for." We allow others to have the loving feelings of helping. You can also have services brought in to your home to help you live independently longer. It can be helpful to have a family member or friend accompany you to important doctor appointments and/or medical procedures.

6. Keep adjusting as the illness progresses. It seems it is a useful framework to keep asking yourself over time what makes sense now. Be patient with yourself. You are in the process of trying to adjust to a new normal, and what is normal will keep changing.

7. Develop your faith or spiritual side. It will help tremendously. It will help give you comfort and meaning.

8. Focus on what you CAN still do. My mom has had a rare form of incurable cancer for 6 years now, but still manages to be a completely emotionally-connected grandparent for our girls, despite all the changes and her diminished physical health. It's just that the granddaughters do the driving these days. It's one of those circular things about life, since she sweetly drove them to lessons after school for many years. Now it's their turn. Keep up your non-illness identity.

9. Set small goals. You need some things that you can look forward to. Whether it's a short trip between chemo rounds, or a much-needed visit with a friend, we all need the petite happinesses of something to look forward to.

10. Consider your legacy. Nothing makes you face your mortality like a progressive, chronic, or life-threatening illness. Mend fences. Let people know that you love them. Send cards. Don't let feelings go unexpressed. Do what you can to organize your household, your financial affairs, and have clear directives to family members about what your wishes are as the situation worsens. Reach out to the people who mean something to you.

If you know some of these everyday heroes, give them your compassion, your respect, and your kindness. Living with chronic, progressive and terminal illness takes tremendous courage and deserves our support. It could be any of us later, because life can surprise us with things we never imagined. All of our heroes don't make the news. Reach out to the ones you know, including those people who strive to keep living and contributing despite serious illness. Chronic illness is something you may have to contend with, but you want to fight the good fight and not let it define you.

Growing From Mistakes

I love that saying about how it's good to learn from the mistakes of others, because I will never live long enough to make them all myself. It's so true!

Mistakes are okay. When I stop to think about it, I have learned a great deal from the mistakes I've made. Here are a few important things I've learned along the way so far:

• Don't get married too young. Really being independent first is a good idea.
• Find work that makes your heart sing, because money alone is not enough.
• Stand up for yourself. You need to be your own best advocate, always.
• You can't expect anybody to make you happy. You can, however, make yourself happy, and share it with someone else.
• Everybody needs their own stress management plan.
• Couples need date nights and sacred time together.
• You are stronger than you think you are.
• You can't possibly please everybody.
• Friends are incredibly important.
• It's better to not use credit cards. Live within, or under, your income.
• Ask for what you really want from other people. It greatly improves your chances of getting it.
• Time is often more important than money.
• You have to take on some things that scare you in order to grow.

Have any of your mistakes taught you a valuable lesson that you carry with you? I bet you can think of a few things.

We need to be able, ideally, to acknowledge our mistakes, both to ourselves, and to anyone else who affected by them. One of my favorite children's books is "Nobody's Perfect, Not Even My Mother." In truth, nobody is perfect, and it makes us more approachable and real to those we are closest to when we can own our mistakes and not blame others. You can even own your own special contribution to a bad situation that involves others. It means you are a good role model for your children about humility, integrity, and taking responsibility.

As parents, we also need to teach our children that mistakes are something we grow from. We do this by staying calm, not freaking out or overreacting, and involving the child in helping to repair the damage or deal with the natural consequences of a bad choice. For example, this is why I don't want parents of teens to protect their children from detentions at school for tardies or dress code violations, or prevent them from getting dropped from a team for attitude. Better that high school students learn now, and not wait to learn these lessons until later.

The reason I want parents to remain calm is that it throws the whole life lesson thing off if you are screaming and red-faced. They just think you are nutty, and the lesson is lost. We can't wrap our children in bubble wrap. They get stronger from accepting consequences, whether good or bad.

I recently found a interesting book compiled by actor/producer Charles Grodin, called "If I Only Knew Then...." (Springboard Press, 2007). In it, Grodin, as well as other writers, producers, actors, and newsmakers each write a few pages about something they learned from a mistake. I found it heartwarming to read each of them opening up and being honest about something essential they had learned through a mistake.

One of my favorite stories in Grodin's book was Lily Tomlin's. Lily shared about regretting not canceling a show at Kennedy Center to attend the Oscars and do a spoof where she was invited to appear on stage in Cher's noteworthy bare-midriff and feather headdress outfit the year after Cher wore it. She feels like she missed a peak moment of irony and fun out of obligation to not reschedule the other show. Lily wishes she had followed her heart and been a part of Oscar history. Her take-away lesson was to "take your one wild and precious life, and fly." Now that's a great life lesson.

Maybe mistakes are really okay, and a part of the plan for our individual development. Getting the lesson out of it is the key part, so we don't need to learn the lesson over and over. Mistakes are what we grow on.

Staying Power: I Won't Give Up

http://www.youtube.com/watch?v=O1-4u9W-bns

Recently I heard a beautiful new song by singer/songwriter Jason Mraz called"I Won't Give Up."

It has a very pretty melody, but I especially liked the message of the lyrics. It always amazes me how music can go places and reach us in ways that words alone often can't.

Years ago, when I was working with cancer patients and doing hospice counseling, I had the honor of getting to work with an interdisciplinary team from the hospital that included a very gifted music therapist. She would play favorite songs or hymns for our mutual patients on the oncology floor at the hospital, or on our home visits with patients who were on hospice at the very end of their lives. Incredible things happened. Sometimes a patient who was relatively withdrawn or unresponsive would brighten and remember favorite songs from the past. They might even sing the lyrics from memory. Music can really impact each of us in powerful and healing ways.

At times, music can express emotional states and experiences, and capture them for us. With Mraz's new song, I felt moved by his message. "I Won't Give Up" is a powerful statement of resiliency, faith, and hope. When I am working at counseling couples, I am often struck by how much we need to dig deep and really try to learn and grow in intimate relationships.

It may seem easier to give up when we realize key differences between ourself and the other person, but the easiest choice isn't always our best path for growing into a stronger, more flexible, more loving person. Holding onto the resolve to choose to stay and grow can be a powerful life decision. If we give up easily, we avoid growth. Couples therapist and researcher John Gottman talks about each couple having a few perpetual, unresolvable issues. What matters is learning to dialogue about them with love and respect. Guess what happens if you trade in your partner and get a new one? Answer: You get a whole new set of perpetual,unsolvable issues you will come to identify within a couple of years. Grow now, or grow later. It's your choice.

There are situations where committed relationships should end. If your partner is abusive, refusing to deal with their addictive/chemically dependent behavior, or putting you and your children at risk with their dangerous behavior, you must act. You must give up to protect yourself and any children in such circumstances.

In many committed relationships, however, I encourage couples to dig deep and stay close through challenges. Mraz's song talks of hanging in there even if the"skies are dark." His lyrics also reference understanding differences with your partner, appreciating and accepting them. Mraz notes the value of learning to be flexible, and understanding how being a better, less rigid partner will help you grow personally. I often am struck by how powerful it is to help couples see that there are usually two correct (and different) perspectives on whatever issue they are stuck on. File this under,"Do you want to be right, or do you want to be happy?"

It occurs to me also with our children and teenagers, it is helpful to cultivate this "I Won't Give Up" mindset, even if they are going through a particularly difficult phase where they are acting out, rude, defiant, depressed, angry, etc. Keep on providing the calm, loving presence and set those limits. Get professional help. Find someone who can test and guide them if they are having learning issues. Find a good family therapist to help if the relationship between parent and child is breaking down. Work through it until you get to the other side. You will be glad you did for the rest of your life.

Even in thinking about individuals, this need to never lose hope is relevant. We may go through very difficult or disheartening experiences, but it is important to assess the impact, do extreme self care, and begin again. Some very challenging life experiences teach us, grow us, and tenderize us. I call it the Appreciation School of Life, because when better things happen later in life, you profoundly appreciate it. Don't give up on yourself.

I guess, upon reflection, I like Jason Mraz's new song so much because as a therapist, I feel much of what I spend my life working with people on is really, at the core, about resiliency and hope. Learning to grow from the losses and challenges in life is essential. Holding onto hope for rebuilding or strengthening your relationship, believing in yourself to go on, and not giving up on your children all have something in common. It all takes the ability to hang in there, and being open to learning and growing along the journey of your life. I wouldn't trade this work for any other work I can think of. It feels like a privilege to help people recapture their strength, hope, and ability to do better as they know more. Nice job, Jason.

Raising Confident, Capable Children

I got a call this week from a PTA rep at an elementary school near my office who asked me to come and speak in a couple weeks about 'Raising Capable, Confident Children' at a morning meeting for parents at the school. I happily accepted, and have been perusing my file on presentations I have given on the past on this topic. I am reflecting from my twenty years counseling parents, children, and teens about how important it is to help raise children who are responsible, kind, hard-working, honest, and self-motivated.

As a parent myself, with children in late high school, college, and launching out to adult life on their own after college, I see the importance more than ever of parenting with our long-term purpose in mind. My goal has been to launch 3 capable young adults into the world, who have determination and resiliency, set goals and work towards them, and live with integrity and kindness. I want them to have healthy relationships, with give and take, and develop their own voice both in relationships and in the world. I want them each to find their purpose in the world of work, so that they can contribute and have the high self-esteem that comes with being able to support yourself.

As parents, how do we help to create this?

Our parenting style matters. Are we dictators, who threaten, punish, yell, and threaten? Are we doormat parents, who don't have any clear rules and are afraid to say no, needing to be our child's buddy? Or are we active parents, who are loving, but also have clear family rules and responsibilities, set limits, and give consequences that are consistently and calmly enforced? These parenting styles result in differential outcomes.I see it happen with the families I work with. I see it in my own family.

How do we teach our children to be responsible? This character trait is best taught in little lessons all along the parenting journey. Even small children can be taught to feed a pet, set the table, or keep their room picked up. We can role model doing Saturday chores together as a family. As children grow up, we can be mindful to watch for all of the little lessons and skills we can teach them along the path to growing up. We can increase a teen's confidence by helping them learn to do their own laundry, cook a few meals, become a safe driver, and learn how to do household tasks that they will be glad they know later. We cannot overprotect or make them weaker. We can teach them how to manage a small amount of money, and later how to get a part-time job and learn about being on time, the value of money earned, and dealing with the public.

How can we teach our children healthy relationship skills? We can model using them, by not being a hot reactor, talking through conflicts, and communicating effectively with them. I taught Active Parenting classes for parents for many years, and so admire parents who weren't sure how to be an effective parent, not wanting to repeat their own parents' mistakes, and dedicated the 12 hours it took to take the Active Parenting series with me. We can listen to our children. We can ask them how they see things. We can hold family meetings, where everyone gets the information on what's happening in our family, learns to express themselves and have a say, and solve problems or make fun plans together. We can learn to be an approachable parent, and not block communication between us and our child. We can demonstrate the importance of mutual respect in the family by our own behavior. We give them our respect, and we require it from them, as well.

As a parent, we don't have to be perfect, and our children don't expect that. We should, however, be able to apologize if we are wrong, and role model how to make repairs in a relationship. We need to spend positive time together with our child, teaching them things, doing activities together, and helping and encouraging their effort and growth in their schoolwork, sports, activities, courage, self-initiative, and leadership. I've seen too many parents over the years that were just critical, and didn't see the tremendous positive influence they could have on their child by encouraging the best in them.

Each child is different, and comes with their own strengths, challenges, and temperament.

Our challenge, if we choose to face it, is to figure out who you've been sent, what their natural strengths are, and help them by teaching them and equipping them for adult life in every way that you can. The more socially skilled, responsible, resilient, and motivated your child can become, the brighter their future can be. You'll leave this planet better because of the child you are leaving behind, and working yourself out of a job. That's success for a parent, and it feels wonderful.