Posted in coping with chronic illness, coping with life threatening illness, living with chronic illness, overcoming adversity, Spirituality and Health

Soul to Soul

Yesterday many of us were captured by the news report of the Malaysia Airlines jet that was blown out of the sky by a surface-to-air missile. It’s a tragedy. It’s difficult to comprehend, the severity of the act and the lack of conscious one must have to have launched that missile.

I could go on about how wrong and evil this act was, but I want to focus on the way this tragedy was covered by the media. I was watching ABC World News with Diane Sawyer (reporting by David Muir), and the reporter made reference to the two hundred ninety-eight “souls” that were lost in this event. At first I didn’t think I had heard them correctly. I don’t think I had ever heard a reporter talk about the “souls” instead of how many people died in the this tragic event.

As the reporting continued, a second reporter when speaking about the people on board the plane also referred to them as “souls”. It was then that I was sure I had heard them correctly. The news was referring to these murdered individuals as “souls” and yet on most days the word “soul” doesn’t arise, so why now?

I’m not sure if the news reporters would differ between the “soul” and “souls”, but believing that they are one and the same I’d like to think that the two go hand-in-hand. I’m not sure if the reference to “souls” was just a targeted word to evoke more sympathy for those killed in a senseless act of terrorism or if the reporters were expanding on the shared humanity for everyone witnessing this act of violence. I’d like to believe that by acknowledging the “souls” and the “soul” we honor the memory of those who were killed, and honor their humanity.

This is one of those moments when the idea that we’re spiritual beings having a human experience is punctuated. The experience of loss is enormous for the families. For those of us who did not know these “souls”, the moral injury we suffer when senseless violence occurs is horrific.

I urge you to protect your soul. I invite you to remember the innocent people murdered and to use that as a catalyst for kindness throughout your day. It will boost your “soul” energy. If the reporters can talk about “souls” and in turn the “soul” so can you.

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Posted in Caregiving

Cost of Caregiving

Welcome to Caregiver Friday!!

Well the numbers are in and unfortunately it’s clear that caregiving is not only an emotional and spiritual issue, but a financial one as well.  A report on ABC World New Tonight with Diane Sawyer estimates that caregiving costs the average person $303,000.00.  This figure is in lost wages, expenses for caregiving, impact on pensions and social security.  I don’t know about you, but that’s a lot of money.

Let’s take it one step further than just numbers.  What about the emotional cost of caregiving.  How can you put a dollar amount on worry?  What’s the physical impact on you, the caregiver?  What has caregiving cost you spiritually as you strive for explanations about how this phase of your life materialized?  What does it cost you mentally to feel out-of-control and at times at the mercy of an illness that’s not even in your own body?

I don’t believe the Congressional Budget Office could factor this monetarily, only you can determine the cost to your body, mind, and spirit.  I guess the bigger question is aside from the obvious aspects of caregiving; how can you cut the expenditures?  I just received an e-mail about using writing in a soulful manner and the it shared a bumper sticker that said, “Life is Fragile, Handle with Prayer”.  I’m not saying that you need to pray to get through the day or to reduce the impact of caregiving on your soul, but finding ways to curb the expense to your spirit is important.  It will allow you to build up resources in your emotional bank so when necessary, you can make withdrawals without running a deficit (leave that to the government).

How will you cut your personal costs to caregiving?  Unfortunately in this day of extreme couponing, there’s no coupon that can give a reduced impact on your soul.  Find outlets to release the negative energy impacting your body, mind, and spirit.  Engage in pleasurable activities, have a lovely meal, engage in a creative activity, join a support group, make an appointment with a spiritual advisor, contact a coach, talk to a psychotherapist, journal your thoughts, whatever you choose I hope it reduces your personal cost of caregiving.

Posted in Caregiving

Stop Breaking Your Back

Welcome to Caregiver Friday!!

I know that some believe the big question is, “What is the meaning of life?”  Afer careful consideration I believe the big question is, “Why are we so afraid to ask for help?”  As caregivers you know how much responsibility you take on to make sure the life of your loved one is of the highest quality and least pain.  Unfortunately, many studies on caregivers show that not only do caregivers face emotional difficulties like anxiety and depression, but they also have a high degree of physical problems, particularly back pain.

Last night a story on ABC Nightly News with Diane Sawyer showed that help is available if you ask for it.  There are good people who are selfless willing to assist.  The problem is they can only offer to help if they know you need it.  The story revolved around a little 8yr old boy, Sam Parker.  Sam was born with Cerebral Palsy and is fed by a G-tube.  He’s immobile, doesn’t speak, and is blind.  His family was taken care of this 75lb boys needs since his birth.  unfortunately, his father had major heart surgery is unable to lift Sam making getting Sam up the stairs for bed difficult.  The family put out a call for help to the local high school and that’s where the magic happened.

The call for help was answered by the captain of the football team, Rudy Favard.  Rudy comes to the Parker’s home four nights a week at 8pm to carry Sam up the stairs to bed.  It’s interesting to hear about how Sam’s relationship with Rudy is developing.  Although you need help the patient may be a bit reluctant, but as we hear about Sam that uneasiness dissolves a new relationship/bond is formed. 

When Rudy Favard was interviewed he shares what a gift it is for him to be of service to this little boy and his family.  You can hear in his voice and his story how much joy the relationship with Sam brings.  When Rudy began helping Sam make it up to bed he was stiff and non-communicative.  Things have certainly changed; Sam now wiggles and giggles when Rudy carries him up the 14 stairs to his bedroom.

What if the family had never asked for help?  If they had tried to manage the situation themselves someone in the family could or would have been severely injured.  It would have increased the amount of stress in the family and that’s never good for a cohesive family bond.  Sam would have become the focus of the stress and that’s never a good thing.

Help is out there is we ask for it.  I’m sure some why we don’t ask for help is a combination of shame and pride, but let’s put that to the side an understand that it does take a village for us to move forward in our lives.  When a member of our tribe is ill or injured, others are willing to help ease the burden and keep the tribe together and moving forward on the journey to health and healing.

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Posted in Having a Voice in Healthcare, Partnerships

Doctors Providing Hope

Every so often I come across a story the renews my faith in human nature.  It brings me peace-of-mind to know that there are still medical professionals out there willing to help someone without trying to make a buck.  ABC World News with Diane Sawyer featured Dr. Andy Moore and the medical professionals at “Surgery on Sunday” as their person(s) of the week.

“Surgery on Sunday” is in Lexington, KY where the team of medical professionals offers their surgical services once a month for those who need surgery but are uninsured.  The staff providing the services couldn’t be more humble about this magnanimous service they provide to the Lexington community.  One doctor interviewed said that the “thank you” he receives from a patient he performed surgery on is uplifting and fills his soul to the brim.

The medical professionals at “Surgery on Sunday” feel honored to provide this service to the community.  It’s actions like this that prove that a community based approach to healthcare is not only possible, but works well.  It provides a safety-net for those who are not eligible for state or federal programs like Medicare of Medicaid, thus relieving the stress to those individual in need of surgery.

A program like “Surgery on Sunday” is replicable.  It isn’t rocket science; it takes medical professionals volunteering once a month and a surgical location to make it possible.  We all have to remember that there are many ways of being paid, and one is gratitude.  A program like this not only helps those who need surgery, but extends hope to potentially millions across the country who may someday benefit from the model created by these heart-driven medical professionals.

I hope that you will send all those affiliated with “Surgery on Sunday” your best wishes and congratulations on their triumphant success.  I hope you’ll refer your medical professionals (if you have one) to the website, to show your medical team what can be accomplished to serve your own community.  Last but not least, please hold hope in your heart for what’s possible when inventive, caring people put their body, minds, and spirit to work to create something that fills a huge gap in our current healthcare system.

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

If Cher Said It, It Must Be True

I’m always surprised when a famous person gets connected to a news story that I didn’t think connected.  I was watching ABC World News with Diane Sawyer and the “Person of the Week” was a mountain climber who was an amputee.  He didn’t have the money to climb to the summit of the mountain, but the money appeared.  The money came through Cher, or one of the organizations under the umbrella of her life.  She provides funding for cases just like this; someone with a tremendous challenge who doesn’t have the means to take this huge leap toward overcoming some very difficult challenge.

What surprised me even more was when they showed a short interview with Cher to explain why she provided the funding.  She said, “Going to the top of the mountain is important.  Going to the top of your fear mountain is more important.”  That’s an incredible philosophy and truthfully I was surprised at how profound Cher came across; she embodied the Buddha in that moment. 

How does this apply to your life?  Following the diagnosis of a chronic or life-threatening illness the “fear mountain” is often huge.  The unknown is the catalyst for that fear and if not curbed it can become bigger and bigger over time.  It’s not like the “fear factor” is going to subside on its own; it needs to be subdued like bull at the rodeo.  It needs to be overtaken and put in its place; that can be a daunting task, but it has to be done.

 The next step is to identify what it is you’re afraid of, aside from the obvious.  Everyone has death anxiety at least according to Irvin Yalom, as stated in his brilliant book, Staring At the Sun, so let’s take that out of the running.  Personally I can tell you that my biggest fear is about pain and suffering.  Having done this work for so many years and encountered death as much as I have the idea of “not being” isn’t terrifying.  I’ve identified my fear so my next step is to figure out how I’m going to decrease any and all opportunities for pain and suffering to show its ugly head.

In order to conquer my fear I need to be go into my resource list and identify those things that will help prevent or reduce what I’m afraid of so I maintain a certain level of control over my own life.  It may mean insuring I get enough rest or exercise.  I may make a point of spending more time in my art studio because when I’m in “the zone” my body is ultimately engaged in something pleasurable preventing the other stuff from creeping in to my life.  All of these became punctuated after reading Norman Cousins, Anatomy of an Illness, where Cousins used laughter to offset his severe bouts with pain.

Cher is right; you have to make it to the summit of your “fear mountain”, plant your flag at the top, and know that you have the capacity to stand tall and make informed decisions about your life!

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

Defy Gravity with Stephen Hawking

We learned about gravity and Sir Isaac Newton back when we were in school.  The lessons demonstrated why our feet stay firmly planted on the ground instead of having us float through the air like Casper the friendly ghost.  Gravity is an amazing thing and without it we’d be big trouble.

However, the pressure exerted on us from gravity is enormous.  The pounds per square inch of pressure puts a strain on the body; one we’re not even aware of unless you’re carrying around a lot of extra weight…then you feel it.  So why talk about gravity when I should be talking about healing from a chronic or life-threatening illness?

I believe that there is physical gravity and then there are other types of gravity.  The other types of gravity try to keep us grounded but often only serve to keep us trapped in the status quo.  During Diane Sawyer’s interview with the noted physicist Stephen Hawking, the video showed Hawking floating in space on a zero gravity flight.  Can you imagine what that must have meant to man who has spent most of his life in a wheelchair using machines to help him communicate?  Can you imagine for a moment the feeling of freedom he experienced in the zero gravity chamber?

Most of us can’t because we’re not trapped in our bodies, or better yet locked in our bodies, the way Hawking has been for years.  Following the diagnosis of an illness many do become trapped in their emotional or spiritual bodies and that is a difficult journey.  Feeling trapped in despair, depression, lack of faith, or feeling abandoned by God could leave you bound and held against your will.

The goal is to find those gravity free zones where you can express yourself authentically.  These gravity free zones give you the opportunity to explore new avenues of health and healing.  They offer you options to despair.  They provide you with the feeling of possibility.  Hopefully after seeing someone like Stephen Hawking float in the air you too will believe that you can overcome the restraints that are placed on your or have been self-imposed.

Give yourself the oasis of a gravity free zone and expand your horizons.  It will boost your immune system and that’s great incentive.

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

Stephen Hawking and Wonder

Last night I was watching ABC Nightly News with Diane Sawyer.  She had an interview with the famous scientist and philosopher Stephen Hawking.  Because of Hawking’s health issues, he uses a computer device to type out words at the rate of 1-2 words per minutes, they gave him the questions ahead of time so he could respond during the interview.  The interview was engaging and once again Hawking’s story is amazing.

At the age of 21 Stephen Hawking was diagnosed with ALS, Lou Gehrig’s Disease.  He wasn’t expected to live more than a year or so, but he has outlived his prognosis by 43 years…that’s amazing.  He went on to become a professor at Cambridge and one of the world’s most famous voices about physics. 

One of the things that was impressive was that his daughter seems to be a partner in his life.  He married twice, has children and grandchildren, and obviously his determination, perseverance, and wonder has mesmerized his family just as he has mesmerized the world.

Watching the interview I starting asking myself, “what makes and made Hawking different from others with the same diagnosis?”  When I asked myself this question what came to mind was the idea of wonder.  He has lived his life in a place of wonder.   He’s always asking the next question, coming up with a new theory, and always in hot pursuit of an answer to the big questions.  Does wonder prolong life?  Does engagement in something, anything so intensely motivate the immune system to go full throttle at all times aiding in health and healing?

I know that many wouldn’t want to live their life trapped in their body, only able to communicate mechanically, and need constant caring for one’s personal needs.  Hawking is obviously surrounded by a caring family and lots of love.  It doesn’t hurt that he has admirers around the world and it has been that way for forty years.

I was most taken with his response to Diane Sawyer’s question about advice to his kids and grandchildren.  His response was: 

“One, remember to look up at the stars and not down at your feet. Two, never give up work. Work gives you meaning and purpose and life is empty without it,” he said. “Three, if you are lucky enough to find love, remember it is there and don’t throw it away.”

Amazing words from an amazing man.  I have two questions for you.  “What do you wonder about so intently that it could fortify your physical, emotional, and spiritual life?”  Last but not least, “What advice (like Hawking did in the interview) would you give family or friends that will stick with them long after you’re gone?”

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

It’s All About How You Frame the Experience

As usual I was watching ABC World News, now with Diane Sawyer, when a story came up about a soldier, Lt. Colonel Tim Karcher, who had been injured in Iraq.  He had lost both his legs and by the time he returned to Walter Reid Medical Center he was dying of an infection throughout his body.  His wife gently told him that if he needed to “let go”, she’d be able to raise the family and go on.  He survived and is being fitted with prosthetics so that he can walk again.  He’s hoping to return to the service in some capacity.  That story alone speaks about choices and how we frame our experience, but that wasn’t the turning point for me about his experience.

Being interviewed he calmly turned to the interviewer and said, “You can decide if it’s a life ending experience or a life changing experience”.  In a moment a flash went off before my eyes and I got it.  The message was bigger than any billboard I’ve ever seen, bigger than the Jumbotron at a ballpark, and deeper than any previous quests for peace.  He challenged each of us facing a health challenge to make a decision on the road we’ll follow.  We’re at a fork in the road and the choice is clear, sit ont he couch moaning and groaning about how life is unfair, or get up, get out and live each day with whatever vim and vigor you have left, or hope to cultivate down the road.

There’s certainly a place for self-pity following an illness diagnosis, but when it defines you there is a sense of hopelessness and that plays mean tricks on your body.  Your body is trying hard to get well and if you don’t give it your full support then you’re abandoning your own body, your own self and I don’t believe that’s your intent (well or sick).  How will your diagnosis be a life changing experience for you?

That soldiers one line makes what patients have told me for years, that their diagnosis was a gift.  It was a gift because they made it a life changing experience.  They took the illness and made lemons out of lemonade.  They put up with all the treatment regimens in hopes that their lives would be better to some degree on the other end, even if it meant a lifetime of treatment.  When the diagnosis is a life changing experience there are choices about how life changing and how it will change your life, but let’s say it opens your eyes to possibility.  Maybe it gives you the freedom to do something you’ve always wanted to do but didn’t have the guts to do…until now.

I recently listened to Michael J. Fox’s book, Always Looking Up, and even with all his fame and fortune, he wouldn’t have had many of the life affirming experiences he’s had without the diagnosis.  He has made his Parkinson’s Disease a life changing experience for him and his family.  He is living proof that it can be done.  If you look deeper and closer to your own personal experience I believe you’ll find people in your own sphere who have done the same. 

Your choice, life changing or life ending…I know which I prefer!