Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, End-Of-Life Care, Grief, living with chronic illness, newly diagnosed illness

Can We Really Deny That Children Die?

Last week I wrote my 900th post for this blog. When I wake up in the morning I’ve started thinking about what could I possibly have left to say about health and healing, life and death, and overcoming adversity; and then a story pops up that all I want to say is, “REALLY?”

The Riverside Unified School District has banned John Green’s book The Fault in our Stars. The book has been cited as a book that will last the test of time because it’s a story about love, relationships, quality of life, and death. I read This Star Won’t Go Out by Grace Esther Earl, a real life account of a teen with advanced stage thyroid cancer. Earl and John Green had become friends and although there are similarities between the book and the memoir, Green’s book is fiction.

What was the reason for the Riverside Unified School District removing Green’s book from the middle school library? They didn’t want kids this young 11-12-13 to face mortality. They believe that reading about a teen dying would be too much for these kids to handle. Are the kids in Riverside living in a bubble like the Buddha prior to embarking on his journey to enlightenment?

Do you think that the principal of the school, the librarian, and some parents who voted really believe that children don’t get sick and die? I don’t know about you but if you ever watch television you can’t help but see a commercial for St. Jude’s Children’s Hospital. We have an entire network of hospitals in this country devoted specifically to the care of children and the Children’s Miracle Network. We have the Make-A-Wish foundation, giving children with life-threatening illnesses the opportunity to fulfill something on what we would call their “bucket list”.

I understand that death is difficult to speak about even for adult, but it does happen and denying it only causes greater pain. My hope is that no child has to personally experience illness and death, either their own or that of a loved one, but it will happen.

I’m disappointed that a school district would remove a book like this from their library because they are queasy about the topic. What I know about kids, maybe more so than adults, is that they are extremely resilient. They are inquisitive and would take these topics and want to discuss them, not shy away from them. When I was in high school, one quarter of health was devoted to death and dying. A progressive move on the part of our school district. Perhaps I should give Riverside Unified School District the name and number of my high school so they could temper their own resistance and fear.

Children die and it’s terrible. Removing a book that raises important questions is a travesty. The school should be ashamed of themselves.

Facing a chronic or life-threatening illness and looking for education, support and inspiration?  Visit http://www.survivingstrong.com

Want to discuss difficult topics with children through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter:  @GregKatz2

Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Stuck Like Glue…Holding on Too Tight to One Piece of Information

Colorado Public Radio interviewed a woman who recently wrote a book about her experience with the medical community. What happened? She was wrongly diagnosed with Multiple Sclerosis. I’m sure you’re going how does that happen, but unfortunately doctors aren’t perfect. We should always remember they say that doctors “practice medicine”; it’s not a perfect science. Unfortunately the troubles are on both the doctor’s and the patient’s sides of the fence so we have to develop strategies to overcome these upsetting outcomes.

The new director of the University of Colorado Health Sciences Center, Dr. Matthew Wynia, MD, MPH, talked about in the age of Google many patients are coming for medical care with their own diagnoses. On the flip side, Jerome Groopman, author of “Second Opinions”, and “How Doctors Think” shares that doctors have been trained to make a diagnosis in the first twenty second of their interaction with the patient.

Information is great, but too much information can be harmful. Wynia talked about a phenomenon called Anchoring Bias. Anchoring bias is when we lock our thoughts and decision around a particular fact or group of facts to the point that we become unable to hear any other opinions or possibilities.

Personally I have been guilty of self-diagnosis. I’ve taken all my symptoms, entered them in the computer and waited for the diagnosis. I know that it’s not definitive because I may be experiencing certain symptoms, but without further testing or exams I can only account for those I can see or feel. However, I can see where it would be comforting to walk in thinking you know what’s ailing you because the unknown is quite scary.

On the doctor’s end we also need to address anchoring bias. Doctors are trained to believe that A+B=C. Unfortunately, there are too many variables in the human body. Groopman recommends that after receiving a diagnosis asking the doctor, “If it weren’t X, what else might it be? What other organs are nearby that may influence your decision?” The key is dislodging the provider’s stronghold on the diagnosis they believe is 100% certain.

Unfortunately diagnostics are sometimes fluid. It’s important to remember that healthcare is a team effort. We, the patient, have to be forthright with our providers and the providers have to be willing to listen to the patient’s entire story. Detectives can’t solve cases without all the information and the same is true for medical diagnoses.

The one thing I encourage you to anchor to is the idea of optimal health. I had some major pulmonary issues earlier in the year. It would have been easy for the doctor, knowing I have an asthma diagnosis, to simply go with the pulmonary diagnosis. Instead, he ran a plethora of cardiac tests to rule out the possibility that cardiac issues didn’t spark my pulmonary issues. It was interesting because on my annual visit with my dermatologist I told him about the numerous cardiac tests I had and he was glad that my primary care physician expanded his sights beyond my obvious breathing issues, reinforcing my confidence in my doctor.

Be aware that we’re all subject to anchor bias, and not just in medical care. You’d be surprised how we can all be like a dog with a bone when it decreases our anxiety. Health and healing requires that we not look at healthcare as a one-way street. There are often many avenues to be explored and getting to the heart of the matter increases the accuracy of diagnoses!

Diagnosed with a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to explore possibilities of health and healing through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness

Physician Assisted Death…Is it an Option?

On Monday I talked about my visit to the Medical campus at The University of Colorado Heath Sciences Center’s monthly ethics discussion. This month they discussed Physician Assisted Death (PAD). The first thing that caught my attention was the shift from Physician Assisted Suicide to Physician Assisted Death. What caused the shift in terminology? Is it a way to make the legislatures in our country look upon these actions differently? Does it take away the stigma of suicide? Does it differentiate between suicide as we traditionally think of it and as a choice in dying?

The speaker presented some very interesting statistics that has been collected since 1997 about those who choose Physician Assisted Death. The most startling was that of all the prescriptions written with the intention of PAD only 64% actually follow through on taking the medications to end their life. Here are some other interesting statistics:

*74% were over 65 years of age

*54% had a college degree or higher

*85% were enrolled in hospice

*94% were insured

*65% had a cancer diagnosis

*94% were Caucasian

*62% were men

I share these statistics because we need to understand the outcomes when we institute societal, cultural, and legal shifts related to end-of-life care.

I’ve spent over twenty years sharing the journey of those facing chronic and life-threatening illnesses. I’ve always had a copy of Derek Humphry’s book Final Exit on my bookshelf. I’ve had numerous clients ask to borrow the book as they think about end-of-life care. In each of the cases I have always found that having the book available didn’t encourage taking one’s own life, but it did take the taboo out of the topic. It opened up many dialogues about suffering, pain, depression, assumptions about life, and a host of other topics.

When we de-stigmatize PAD we can begin to have open and honest conversations concerning advanced directives. These directives are important not only between the patient and the medical provider, but for the person who is your Durable Power of Attorney for Healthcare. Everyone needs to be on the same page. There are only four states that have PAD in the United States. I know that many more states are going to begin these conversations and that’s an important step, allowing us all to have options in our end-of-life care!!

Are you and your family facing a diagnosis of a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Looking to explore your views about end-of-life care through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, living with chronic illness

Ethics On Call

I’m fortunate to live near the University of Colorado Health Sciences Center. The school has a medical school, nursing school, dental school, and pharmacy school. Having these four disciplines on one campus affords them the opportunity to create programming that cuts across all four professions. They recently started a monthly ethics discussion raising issues the staff and students may/will come across in their careers.

Yesterday’s talk was about Physician Assisted Death, a topic that not only cuts across cultural and religious arenas, it is also being debated in many state legislatures. The presentation focused on two cases, both women, a twenty year old with end stage ovarian cancer and a forty-eight year old with leukemia. The cases were both interesting, but what I found particularly interesting were the responses by some of the students about the ethics involved.

I’ve been a mental health practioner for over twenty-five years. I’ve spent most of my career working with those diagnosed with chronic and life-threatening illness and I can tell you, you never know what how you’re going to react until you’re in the situation. Training is good because it gives you a basis for your decisions, but it’s the things not in text books that float around you like a cloud waiting to rain down at any given moment.

One of the things that caught me off guard was one student who was quite vocal. He was responding to a question from the moderator, but his sense of surety was a bit unsettling. I believe in having conviction but when it shuts off the possibility of anything contrary entering one’s consciousness I get concerned. My hope is that when these students enter clinical work and throughout their careers they will have the awareness that nothing in ethics is black or white. If you’re not comfortable with the “gray” zone, then perhaps medicine is not the right field for them.

What can I tell you after participating in yesterday’s dialogue? Create operational definitions with your physician about what you mean when you use words like suffering, distress, and control to describe your health. Have as many things written down in your medical chart about your wishes about care, especially end-of-life care. Don’t’ leave it up to the medical staff to assume, guess, or translate your wishes, make it know and do so with conviction.

The less you leave up for interpretation. Give yourself the peace of mind you need and deserve by having the hard dialogues with your medical providers. It will save you a lot of trouble and will reduce the risk that your wishes won’t be honored!

Facing a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to express yourself through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness, overcoming adversity

Is It Chic to be Sick?

Illness is a difficult experience and is usually something that is dealt with in the privacy of one’s home. I guess that times are changing because there seems to be a new trend on television; shows revolving around illness. I guess the networks and cable have had a topic epiphany; it’s chic to be sick.

Don’t get me wrong; I’m watching the two shows that have come to my attention. While watching the shows I’m riding on the coattails of the writers looking at the themes they are bringing to consciousness giving the public an insiders view of illness.

This summer saw ABC Family launched Chasing Life, the story of a twenty-four year old just starting out in her career as a reporter who is diagnosed with leukemia. Of course there are a few side stories that make it a drama, but it does touch on the process of being diagnosed, going through tests, the social ramifications of the diagnosis, and at the end of the season the start of treatment.

The show punctuates the common themes of denial after a diagnosis, how illness interrupts life’s plans, and the importance of having a support group/team to help you through the process of health and healing. I commend ABC Family for taking on this precarious topic. It’s not a mainstream storyline, but the cable network is exploring real life scenarios giving us a glimpse of the world of illness.

The other show that began this past week is the Red Band Society. Fox is taking on the topic of illness amongst kids who are in a long-term inpatient Children’s Hospital. The show has only aired one episode so it’s difficult to know how the storylines will progress. We’re only getting the back stories of the patients and it may take some time to see how the writers attack the multiple issues related to serious illness.

I’m glad that shows are beginning to emerge around the theme of illness. Illness is something that will touch all of our lives. My hope is that these shows will give us a platform to discuss these topics that are usually taboo. I hope these shows will give those facing a chronic or life-threatening illness to seek support from groups, a therapist, a coach, or spiritual director.

Making illness the central theme of a show takes guts. I hope the shows make it because we need this type of cultural exposure to the issues surrounding illness and healing!

Facing a chronic or life-threatening illness?  Searching for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to explore health and healing through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, care for the caregiver, Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness

Bicycle Built for Two:Celebrating Caregivers

It has been a while since I wrote a post focused on caregivers but I had to address the amazing souls walking this earth; the caregiver. Caregivers have been called co-patients because when an individual is diagnosed with an illness they too face many of the same issues as the person with the disease. Those in relationships with the patient experience the same life interruption and on some level there is a death that occurs for them on the emotional and spiritual levels.

Thanks for Facebook I saw this commercial about a couple that warmed my heart, renewed my faith in love and relationships, and showed how caregivers are plugged in on the physical, emotional, and spiritual aspects of the person they’re caring for. The commercial shows the relationship between a husband and wife and the wife has Alzheimer’s disease. The love and compassion this man shows is amazing and serves as the gold standard for love and compassion. It also punctuates the level of devotion he has toward making the end of his wife’s life as enjoyable as possible by plugging in to the things that gave her joy during earlier parts of her life.

Aside from the stress and strain of being a caregiver, I learned from this commercial the importance of paying attention each and every day that I’m with the one I love. We never know when we will have to rely on that information to make the life of the one we love more comfortable and peaceful. The knowledge caregivers acquire over time are not only an archive of their relationship but an exhibition of love, understanding, and matching one’s words and thoughts to one’s actions.

Please watch this video and think about someone in your life (doesn’t have to be a spouse) and a special moment, activity, food, or some other defining experience that may bring him or her joy in his or her time of need. You’d be surprised how the little things have a huge impact!

Are you a caregiver and looking for resources?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to express your love and devotion as a caregiver through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, overcoming adversity

Being A Change Agent

Are we all looking for change? Change seems to be a buzzword, but I’m not sure what it’s a buzzword for. Change leads us to think about improvement, correction of going off course, or ways to become fabulous. We all know people in our history who have changed the world; Gandhi, Martin Luther King Jr., and Marie Curie come to mind. Are you up for that type of responsibility?

I was watching the new Fox show Red Band Society (a must watch) and the writers captured the true nature of change in a single line, “You don’t have to change the world, you just have to change your world.” Can you think of a simpler thought? It scales the amount of effort needed and increases the likelihood that you’ll achieve greater results.

When facing any type of life interruption we’re called to make changes. It would be nice to keep the status quo, but often that was a factor that led to the interruption.   Change isn’t bad and if done consciously and with commitment we can move further along on our health and healing journey.

I know there have been many times in my life when I wanted or needed to feel responsible for changing the world. I felt weighed down and overwhelmed. I sabotaged myself because the goal was so grandiose and unrealistic that sabotage seemed to rescue me from me. I feel fortunate to have adopted the idea from the Red Band Society prior to the line being spoken on last night’s show. Having responsibility for me allows me to make noticeable changes and in turn that overflows to the people, organizations, and community around me.

Going back to school was one of the most important ways that I changed my own life. I met people, encountered ideas, and engaged in activities that enriched and expanded my consciousness. I submerged myself in a passion of studying art and healing and that brings joy to my life. It was a long journey but the result was a degree and connections to others who are making personal changes and impacting their own communities.

How will you change your world? What is one thing you can do today to begin the change process? Let us know and let’s start a conversation about how we can all change our own world!

Looking to make changes in your life and need education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to explore change through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Empowerment, living with chronic illness, overcoming adversity

Fear…It Doesn’t Do a Body Good

Fear is a topic that we talk about as something to “get over”. We’re told to face our fears, overcome our fears, and accept our fears and learn to cope with them. Why are we so fixated on fear? We know from years of research that fear creates metabolic changes. It paralyzes us emotionally and stunts us spiritually. If you go search “fear” on Amazon there are 150,052 entries for you to peruse. Do you have that much time and energy to resolve fear?

We tout the benefits of being above the animal kingdom with the ability to think and reason; perhaps that’s what’s getting in our way from health and healing! You can face your fear and do it anyway according to Susan Jeffers, but that may be easier said than done. What if we took on the Buddhist philosophy of non-attachment, would that be easier?

I was browsing Panache Desai’s book Discovering Your Soul Signature and he discusses fear. He shares, “Fear is an energy. It is an experience. But holding on to fear is unique to our human nature. Consider this: Every living being feels its fear and shake sit off. Cows, deer, fox, even bears-they all feel fear and move on. But we humans don’t. We accumulate fear. We hoard it and store it in our bodies.” That’s eye opening! How can we learn to interact with fear like water rolling off a duck; experience it in the moment as a message, but let it go once it served its purpose.

I believe in fear as a messenger. I first read Gavin de Becker’s book The Gift of Fear in 1996. His positive spin on fear as a personal and cultural alert system sits well with me. He wrote his book in the wake of the bombing of the Federal building in Oklahoma City. In addition, the news had a number of stories of disgruntled employees returning and killing those at the location of their previous employers.   Pay attention to fear. The visceral response is real and is attempting to get your attention.

Fear has a place just not center stage. Utilize fear if it allows you to be in the moment, but holding on to it keeps you in the past. Take a lesson from the cow, the deer, and the fox and allow fear to bring your focus to a particular threat, but don’t allow that threat to color every aspect of your life!

Facing adversity and looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to release fear through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Illness Narrative, living with chronic illness, Living with Illness, overcoming adversity

Play to Your Strengths

What happens if everyone including you believed that our life would take a specific direction and then a twist of fate changes that direction? What if everything you worked for crashes and burns and you have to reinvent yourself? Know anyone like this? Well if you follow football then you do know someone in this position, Tim Tebow.

Tebow, the young player with enormous promise had a difficult time in the NFL. As it turned out his professional career as a player was short lived, but he has reinvented himself. During his time in the NFL his fame, constant news coverage, and his faith led him to create a foundation helping children going through tough times. Proof of this “Phoenix rising from the ashes”, Tebow is now part of the team on ABC’s Good Morning America. His segment has been titled Motivate Me Monday!

The first down of Tebow’s segment was a hit. The story showed the resilience of ten-year-old Devon Jackson. Jackson was diagnosed with meningitis at age eight and had both feet amputated six inches below the knee. His passion for football was intercepted but not for long. The young athlete learned to walk on prosthetics, but he was still benched from playing because he couldn’t run until someone donated a pair of blades returning the young football player to the playing field.

Jackson shows amazing resilience. When asked about what he loves about being able to play he shared, “I love the way the wind feels in my face.” When I heard the young athletes experience I thought about what do I take for granted in my daily life. If something as simple as the wind in one’s face is a blessing then what else are we allowing passing us by without noticing the magic of the experience?

The segment showed that both young and a bit older can recreate a life of gratitude. Tebow and Jackson both took adverse situations and utilized their strength and resilience to achieve greater life experiences. Devon Jackson is Tebow’s starter and that makes Tebow a great coach, inspiration, and motivator. I hope I can take the lesson from Tebow’s playbook and utilize my own strengths motivating others to enhanced health and healing!

Facing adversity?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to play to your strengths creatively?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, overcoming adversity

Life’s Barnacles

I’m love the water but I’m not a sailor in any way, shape, or form. I do love to be on a cruise ship but I don’t think the captain is going to let me steer the ship. In order for boats of any shape to sail smoothly they need constant maintenance. One of the things that boats have to contend with are barnacles; those little creatures can create major problems for any floating vessel.

Many years ago I was spending time with my oldest niece (who is currently 21). A friend of mine allowed us to use her pool and we went for a swim. My niece was about three at the time and was taking swimming lessons. If you’ve ever had kids in swim lessons you know the levels are differentiated by names like tadpole and shark. My niece was in the water traveling the edge of the pool and she called to me, “Uncle Greg….I’m a barnacle!” It brings back very fond memories, but it also makes me think about what we think are the barnacles in our conscious walking lives.

I want you to think about those things in life that grab on to you and won’t let go. Consider the amount of drag on your life as a result of these “barnacles” or life interruptions. When you are saddled with life’s barnacles you expend energy just trying to stay afloat. It impedes any progress on your health and healing journey.

You never know when something will attach to you until it begins to cause problems. It requires you to seek within your heart and soul what’s dragging you down. Once you find the barnacles, like a boat, the goal is to remove it to resume smooth sailing. How you rid yourself of the barnacle may vary. Read Dan Harris’ book 10% Happier and try meditation to remove emotional barnacles. Have a creative streak then Julia Cameron’s The Artist Way will take you through a process that has been holding you back in your artistic endeavors. Perhaps you need to read Pema Chodren’s The Places that Scare You: A Guide to Fearlessness in Difficult Times, addressing the spiritual barnacles that impede your journey to wellness.

It’s cute to be a symbolic barnacle in the pool as you’re learning to swim, but those real life barnacles will slow you down, even derail your journey to health and healing. Promote smooth sailing by checking for life’s barnacles and removing them to create a sense of wholeness body, mind, and spirit!

Want to remove life’s barnacles?  Visit http://www.survivingstrong.com

Learn to use your creativity to remove life’s barnacles at http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2