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

Responding to the Call

We’re all called by something.  When diagnosed with a chronic or life-threatening illness it’s your health that is sounding the call.  I’m amazed how many people go through the motions when answering the call thinking they are doing all they can to get well.  The truth is that a half-hearted attempt isn’t going to suffice.  You have to put everything you have behind your beliefs and turn them to actions.

I heard a radio ad today that shocked me.  It isn’t often that illnesses or life circumstances related to health advertise on the radio, but lo and behold the voice of those facing chronic and/or debilitating pain has a radio commercial.  The last line of the ad says, “Speak Up…Speak Out…Take Action”.  It’s clear and to the point.  Is there any part of that phrase that you can argue with?  Do you think this phrase only pertains to those facing pain issues?  Don’t be ridiculous, every patient should consider these three steps as part of their treatment regimen.

When you  respond to the call, in this case “Speak Up…Speak Out…Take Action” you are activating parts of your physical, emotional, and spiritual being that may have been napping for a very long time.  It’s this motto, slogan, or challenge that will provide you with a road map to making the great shift; moving from a passive stance as a patient to an active patient.

This ad was heard on NPR following an interview on “Talk of the Nation” shedding light on the issues related to individuals who are intellectually challenged.  One caller whose son has Cerebral Palsy shared how that when people stare at her son she engages them in conversation.  She will ask them if they have questions.  Her idea is to engage in a way that she’s speaking out by encouraging others to voice their unease and lack of understanding. 

Don’t you think the same is true when you see a woman in a store wearing a baseball cap or scarf clearly with no hair beneath?  How can they speak up/speak out/take action?  It doesn’t have to be out for the whole world to hear, but something very private, but it needs to happen.  You need to respond to the call with your biggest voice possible.

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

When It Hits…It Hits Hard

Last week I made reference to what I called “teachable moments”.  I’ve had some very interesting conversations with colleagues and other students from school and the conclusion is that those “teachable moments” are around us every moment of the day.  The real question is how open are we to letting them walk through the door. 

During my recent 10 day training in Oregon, the facilitators had selected readings that we read aloud as a group every day.  It was what they called a choral reading…creating harmony with the spoken voice.  We had been doing this for a week when a poem called “School Prayer” by Diane Ackerman was on the agenda and I got stopped in my tracks.  The words were so profound, to me, that I had to stop and take note of the meaning.  What increased the poems impact was the surprise factor.  We were standing there, a group of 35 people, reading this poem and I felt like I had been hit with a baseball bat.

Facing a health challenge I’m sure you know all about being hit with a baseball bat, but this is different because this is for your own good.  Moments like these are the ones that may catch you by surprise and throw you off balance, but they are the “teachable moments” that will renew your spirit and catapult you to a new level of understanding.  These are the moments when you get a glimpse of being totally awake; it may seem scary, but isn’t living a full life supposed to be a bit scary?

Many facing a chronic or life-threatening illness resort to the philosophy that it’s better to insulate oneself from those baseball bat moments because the diagnosis was so devastating.  However, the insulation prevents you from capturing those moments of intense emotion and connection to others.  Physical, emotional, and spiritual insulation prevents you from experiencing everything that life (including the illness) has to teach you.  Don’t built the fort so strong that nothing can get through because those “teachable moments” are the ones that can and often are the ones that will save your life, both figuratively and literally.

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

Mind Control

Did you see the show “60 Minutes” last night on CBS?  The story is about how humans are using their minds to what will someday allow them to control their bodies.  The story started with a neuroscientist, Scott Mackler, who at age 40 was diagnosed with ALS (Lou Gehrig’s Disease).  As a result he suffers from “locked in syndrome”.  His brain is completely alert but he can’t move any part of his body except his eyes.

Through an invention called “Brain Computer Interface” (BCI), Scott can communicate through a computer.  He wears a skull cap with electrodes that captures his thoughts.  The information is then sent to a computer.  He communicates by thinking of letters that make words and then the computer serves as Scott’s voice. 

Next they showed a woman who had a stroke and also suffers from “locked in syndrome”.  The researchers implanted a computer chip/receptor in her brain and then she’s hooked up to a computer via a plug on her head.  By thinking thoughts she can move a mouse on a computer allowing her to communicate, play music, and answer e-mail.

The hope is that in the future this technology will allow paralysis patients, stroke patients, ALS patients, MS patients and any who lose function in their body to recapture some of what they lost.  The biggest part of this process for Scott Mackler according to his wife is that it gave him some independence.  Being able to communicate with others has allowed him to return to work where he can work on further advancements of this type of technology.  Being able to communicate with loved ones is vital to quality of life.  There’s no more guessing because the person using the device is truly thinking the thoughts.

I know we all get a bit freaked out by technology,  but the truth is as we age and there are more toxins in the environment illness will continue.  Inventions like the “Brain Computer Interface” won’t reverse the disease but works to thwart the immensely limiting impact on the patient’s existence.  It may only be a glimmer of hope today, but fire was started by a spark and this is a huge spark!

Posted in Caregiving

Continuum of Care

Welcome to Caregiver Friday!

While I was away at school I had the opportunity to discuss caregiver issues with a woman that provided services for caregivers of dementia patients.  As the discussion continued I realized that the continuum of caregiver/wellness partner roles is quite diverse.  The population is aging so we know that there will be an increase in the amount of illness in years to come requiring new battalions of caregivers.  The care continuum cares for patients from birth to old age.  The wellness partners of the 21st century are more informed about the patient’s condition, but there is still a huge gap in services and understanding of caregiver needs.

During my conversation with this service provider I realized how entrenched and stuck we can become in our points of view; that’s true for caregivers as well as providers.  The important thing to consider is the fact that the continuum requires different things at different times.  Having the capacity to be flexible is critical to the well-being of the caregiver.  One of the key components that we have to all be mindful of is not to project our own opinions on to that of you, the caregiver.  It’s easy to want to fit you, the caregiver, into a neat little box but the truth is that caregiving is messy.  Although at times it’s physically messy; that’s not what I’m referring to at this time.

I’m punctuating the complex aspects of caregiving and how confusing the experience can be for you.  If you feel that you’re not being served by your service providers bring it to their attention.  As someone who spent years providing services to caregivers; it’s easy to fall into the role of the all knowing.  The truth is that caregivers are as individual as finger prints.  You require and deserve custom tailored solutions address the physical, emotional, and spiritual aspects of caregiving. 

Don’t give in to the temptation of being a yes person.  Make your needs known and understand that wherever you fall on the continuum as a caregiver is exactly where you should be!

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

The Power of Calm!

You live in a crazy world that is full of unknowns that lurk around every corner.  Many pride themselves on being frantic and chaotic as their natural state.  That may impress some and give you the energy you need to achieve lots of things, but does it feed your soul?  Are you able to focus on you when everything is whirling around like plates spinning in the air?  Are you coordinated and committed to the process of keeping everything whirling around no matter the cost?

That philosophy may have worked prior to your diagnosis, but following the diagnosis being in a state of constant chaos will rob you of the most important resource…your energy.  How many times have you heard stories about someone that is running on all pistons and when the project is completed they collapse from exhaustion.  It’s not the good kind of exhaustion because the accomplishment made others happy but didn’t give you any sense of peace.

When you are able to find a place of calm energy you will give yourself the greatest gift on earth; the ability to rejuvenate the mind, body and soul as you move toward wellness.  It’s important to remember that there is a differentiation between healing and curing and calm is definitely focused on healing.  It’s that place deep within where nothing is bad or sick.  The place of calm is the inner place of answers and more importantly more questions.  Being open to the questions and not running from them will keep you in that place of calm because you are befriending the questions that are showing up bring you those teachable moments (we talked about those yesterday).

There is enormous power in calm.  Having the capacity and the willingness to explore the calm is about shifting your perspective.  When facing a chronic or life-threatening illness any place of peace promotes wellness.  Providing yourself the opportunity to move in a positive direction means you are supporting your intention to heal.  The power of calm means that you will discard any and all things that aren’t relevant and will help you set priorities about what and who will reinforce your desire to heal.

Calm can be scary because it’s not something we’re taught to appreciate.  If you’re facing a life-altering health challenge then the place of calm is a safe haven as you wait for the storm to pass and you reach calmer seas.

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

What Are Your Teachable Moments?

I’m one of those people who could spend his life going to school.  My mother has always promised me that if she won the lottery I could go to school for the rest of my life.  Unfortunately she hasn’t won the lottery but I embarked on my latest educational journey two years ago.  I find lots of opportunities for teachable moments sitting in a classroom, but that’s a bit limited in scope.  The real learning happens as we walk in the world on a daily basis.

It’s amazing the lessons you can learn simply by walking down the street and paying attention.  You can learn social skills, develop new interests, and most importantly feel what it’s like to be alive that day!  There is an important question to consider, “how do you learn best?”  When faced with a chronic or life-threatening illness you’ve got a steep learning curve, but that doesn’t mean you have a teachable moment; it means you’re being bombarded with information.

The teachable moment comes when you can take the physical, emotional, and spiritual aspects of the learning and apply them to your life.  It often happens at the most inopportune times and that’s the Universe’s way of having a bit of fun with you, but when it happens you’ll know.  Most likely you’ll feel a bit overwhelmed, flustered, and not quite sure what happened because it happened so fast.  If you pay attention to those moments you’ll come out with the lessons of that teachable moment that are directed at living life beyond your illness.

The biggest of all teachable moments is figuring out how you can learn the lessons you need to live without being faced with catastrophe.  Just because you feel better doesn’t mean you’re done having teachable moments.  If you stop looking for those moments be prepared for what I call the boomerang effect; the moment in time when that big smack on the side of the head shows up once again to get your attention.

Use your teachable moments to their fullest capacity and take each of those moments as a blessing…I know I do!

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

Is Wellness a Muscle?

We’re told that cells have memory.  After being diagnosed with a chronic or life-threatening illness one of the jobs of you and of your treatment is to entice the cells to recall that place of wellness.  I know there is a lot of doubt about whether cells have wellness memory, but for now let’s work off that premise.  Allow us to launch ourselves from a place that is filled with hope and potential.  The idea of memory serves us not only on the cellular level, but the emotional and spiritual level as well.

When we consider the notion that wellness is a muscle then we have to wonder what we’ve done up to the point of diagnosis to work that muscle.  How many times did you take your wellness to the gym, not the one with workout machines, but one filled with good food, plenty of rest, and little stress.  How proficient were you at listening to the body and really getting the message instead of waiting for an ache or pain before you open your ears and your heart to the message?  Is it possible that as a culture we’ve allowed our wellness muscles to atrophy?

If that’s the case then we should all be scared.  The question is “will the wellness muscle respond to rehab?”  Is it possible for us after we’ve been jolted out of health complacency to rebuilt our wellness muscle?  Following your diagnosis, what are you willing to do to start a wellness muscle workout?  What does that workout look like, for you?  How committed are you to rehabilitating your wellness muscle?  There’s no wellness muscle gym or rehab facility so you’re going to have to get creative in how you design and execute the wellness muscle rehab.  Remember, you’re trying to reverse the atrophy that has occurred in the muscle so the plan must be real and you must be diligent.

Unfortunately, most people who haven’t been diagnosed with a health challenge haven’t faced the wellness muscle atrophy, so this places you ahead of the curve.  Activating your wellness muscle not only will help with your current health challenge, but it also will give you more energy for life, increase your social and familial relationships, and give you insights to the possible.