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

Are People like Weebles?

I used to love the commercial for Weebles.  Remember the saying, “Weebles wobble but they don’t fall down”.  Pretty good for a guy that doesn’t have any children.  I can still hear the song in my head, of course ask me what I had for lunch yesterday and I may struggle to remember.  Why do Weebles wooble but don’t fall down?  I think it’s an important question.  No joke, I’m not actually talking about the mechanism, but the idea.  How is it that American toy makers can make a toy that understands the concept of resilience?  How is it that a toy that shouts resilience gets lost on grown-ups when we have a health challenge.  Why all this talk about Weebles?

The truth is that there really are people who wobble but don’t fall down.  I met a young man this weekend who is the Weeble personified.  He’s a fifteen year old young man who has a host of illnesses.  He’s not battling one disease, he’s battling at least three that I could count plus a host of food allergies.  He carries around a fanny pack with an epi-pen because he is prone to anaphylactic shock.  He’s had four colonoscopies starting at age 7.  When he told me about the colonoscopies he followed up with “you know, you’re not supposed to have one of those until you’re 50”.

Here’s a young man that has license to feel bad about the cards he’s been dealt.  Here’s a young man who has a “get out of jail free” card for depression or at least sadness.  Here’s a young man who in spite of tremendous challenges walks around with a smile on his face when he has every right to be pissed off at the world.

The truth is that this is his normal.  He really doesn’t have a memory of being well and maybe that’s the key.  Adults who have been health for 30, 40, even 50+ years and then get sick have a memory of wellness and that anchors us to a reality whose ship has sailed.  Trust me I’m not saying that it’s easier to deal with illness, especially long-term illness if diagnosed at a young age, but we have to look at why we’re so anchored to a reality that is now a memory.

I’ve been very involved over my career in the work surrounding Post-Traumatic Stress Disorder (PTSD).  Many diagnosed with an illness suffer from PTSD because the diagnosis alters their entire world and coupled with the treatment traumatized to a state of hyper-vigilance, night terrors, a life of dread.  Those working with PTSD used to talk about healing PTSD.  At one point the conversation shifted from healing to resiliency.  The idea that we can bounce back from a terrible, life-altering experience and resume something that resemble our lives prior to the diagnosis.

I say we all take a lesson from this young man.  If I could extract the resiliency gene from his DNA I would and then share it with the world.  All I can do is be conscious when I’m in the presence of someone like this young man and be mindful of his experience, which he shares freely.  It is then my duty to share this with you because he is living proof that life with an illness although at times inconvenient can be joyful and full of love.  I am honored to share this story with you because he is the beacon of hope that life really is for the living so sitting around in despair is counter-intuitive to wellness.

Tell me your Weeble story, I know you have one.  We need to hear them to continue on our journey to wellness.

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

How Young Can You Achieve Health Expert Status?

We’re so accustomed to talking about adults who are diagnosed with chronic and life-threatening illnesses.  It’s true that as the population rises and our life expectancy increases there will be an increase in illness diagnoses.  Adults have life experience that helps them achieve expert status on their health challenges.  They have the resources to find information, process it and then make informed decisions.  Is it possible for kids to make those same decisions?

I recently read an article by the Associated Press about, Hannah Jones, a 13 years old British girl who is refusing a heart transplant.  At the age of four she was diagnosed with leukemia and then was diagnosed with cardiomyopathy.  She understands the risks of having and not having the surgery and seems to have come to an informed decision that is in alignment with her experience.  She’s taken control of her life and is supported by her family.  Of course there has been some tirades by the medical establishment as they prepared to launch legal battles.  They don’t or didn’t believe that a 13 year old could make this a decision of this magnitude.

I believe the person that really reinforces Hannah’s strength, courage, and conviction is Dr. John Jenkins.  “Dr. John Jenkins, a pediatrician and chairman of Britain’s General Medical council standards and ethics committee, said children who have lengthy illnesses become ‘experts in their own condition quite early in life”.  That’s the biggest honor and endorsement for allowing a young person to make their own health related decisions.

It’s obvious that Hannah has given tremendous thought and energy to her health.  She’s endured numerous treatments over the years and finally she has settled on her own definition of “quality of life”.  The amazing thing about this young girl is the clarity of her decision.  She has an old soul and that’s what gives her peace of mind with the decision.

It’s definitely a difficult decision for her parents and medical providers, even if they support her decision.  Feeling helpless is distressing.  As a medical provider that feeling of helplessness brings up a host of issues.   As a parent it summons the courage to support what may be or is an unpopular decision.

When do you feel that you’ve achieved expert status on your own health?  How did you get there?  Are there any shortcuts you could share?

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

Isn’t Being a Teenager Hard Enough?

While at a conference this weekend I spoke with a mother about her daughter’s diagnosis.  Her daughter is 15 years old and is facing a lifetime with an autoimmune disease.  I don’t know about you but I can think of plenty of other things I’d rather be doing then thinking about an illness.  Isn’t it hard enough being a teenager without the obstacles of illness?  There are so many developmental milestones that one achieves in their teens and I don’t believe that treatment regimens is one of them.

Let’s look at the reality of the situation.  Teens are self-conscious about their looks, their friends, their activities and throwing a health challenge in the mix escalates their issues.  Everyone is trying to be cool (if they even still use that word) and last I heard illness isn’t cool.  Friends and dating become the center of one’s rite of passage to adulthood but self-doubt and isolation may be the result of an illness diagnosis.

I know that we can’t discuss fairness.  I am just highlighting this stage of life because by nature it’s filled with strife.  Of course no one should get ill, but it happens.  It makes these kids (they’re kids to me) face realities that many adults don’t even want to face; and yet most teens do it with grace and courage.

I guess what I’m saying is that if you meet a teen that has a health challenge, give them a little extra support.  Find ways to be emotionally available to them.  Remember what being a teenager was like and then throw a health challenge in the mix and figure out how you would have coped; maybe you will have an insight you can share.  Try and understand chaos theory because that’s at the root of a teenager with a health challenge.  The truth is, just be you.  Be present.  Be real.  Don’t try and take over their lives; they have to find their own north star and navigate to safety.  It is possible for you to be part of their navigation strategy, but teenagers are resilient and they will find a way to make it work.