Wednesday, March 11, 2015

The Fork In the Road: How Diagnosis Affects Mindset Part 1 of 2

 Great things happen when you spend too much time on Facebook. You met the most interesting people, like  Coach Scott Abel, someone I have followed for a few years now. Read more about Coach here
Coach Scott Abel

He's a very smart guy and his background in body building along with his current work is really quite compelling. Coach cuts to the chase, he does not mince words. When I saw this post it really hit a nerve with me, here is an excerpt from his post:

    'Hard Talk is sometimes necessary: Remember basic psychology teaches that if a behavior is reinforced, then it will continue – behavior that is not reinforced will likely cease. It’s how we train all animal species – and humans are also animals. That monkey will do whatever trick it is taught if it is rewarded with food – even intermittently rewarded. If the reward stops, the behavior stops.
People operate the same way – only sometimes the term “reward” may be harder to distinguish. People have many burdens and responsibilities – numbing routines, dead-end jobs, unsatisfying relationships, whatever. And for some, when no other relief from these things is available - then “illness” or “disability” - become an enticing alternative – and a socially acceptable one at that. It is a way to remove yourself from personal responsibility in your own life.
Once diagnosed, “normal expectations” are lowered for you. Now, of course many people with various degrees of “debilitating” illness – obviously are preoccupied with the disadvantages of that illness. And frankly they are insulted by any hint or notion of secondary gain in their lives from their diagnoses.....' 





When I read this I thought 'Wow, is that me?'  I suppose there are people who might fall into what I would consider a trap, that of making their illness who they are. Are there 'secondary gains' from a debilitating disorder? What happens when you are ill but no one can tell?  What is it like to have to tell someone about a less than great or simply awful diagnosis?
 I am guessing that all of you have been on either the giving or receiving end (or both) of that conversation. The saying 'Cancer is a gift but I would not give it to anyone' comes to mind.



Let's go further with Coach Abel's thoughts:
'..... But when people’s “illness” relieves them of work, duty or other real life normal expectations – then it must at least be considered that this is a “payoff” for them – a reward – an escape from drudgery – and just like with rewarding animals – the possibility that their illness also serves as a reward – that possibility must at least be considered. And constantly rewarding and reinforcing this “illness” label can also prolong the unconscious desire to be a willing participant in serving the “sick” role – and engaging in victim status. Over time, thinking of your illness as part of yourself becomes part of your identity – and you become resistant to even want to change.
After a certain amount of time you must entertain the question - what and who are you without your disorder to define you? Treatment for illness was never meant to induce a state of helplessness and dependency – especially at the “expense of” personal responsibility.....'
( To find the full post go here.)



Tough words indeed. And perhaps, a wake up call.  There are illness that are so disabling that  movement of any kind is impossible. There are painful conditions that never give a moments respite and emotional or mental illnesses that make thinking rationally out of the question. I get that.  There are treatments that knock you on your ass too. Through all of it, we need to remember who we really are, really were, before diagnosis, before the crap hit that fan called life.  We all know about Steven Hawking , we have seen Olympians with missing limbs triumph in their sport,  children born blind who grow into incredible artists such as Ray Charles or Stevie Wonder. Coach's post made me think, what is different about these people? What makes them rise even higher with their issues? What is the 'thing' that defines what they do with their life situation?
Bethany Hamilton



   For me, I took the diagnosis and made every effort to overcome it, to not let it define my life. To be honest, my life has been so enriched by all the research I have done, the people I have met  and the personal growth I have experienced. But I am one of the 'invisible' ones, you cannot look at me or even talk to me at length and know that I have an incurable blood cancer. Yet having it has given me such inspiration, such gratitude for the time I do have here on this orb. When an oncologist gives you a 'good' prognosis of 7-10 years, as mine did,  you have a choice to make. And no time to waste.
Expiration Dates are for Milk Cartons


So far, I have not had to swipe my 'cancer card' but I would not hesitate to do so as gracefully as possible if the time comes that I need to. I have had someone swipe theirs on me. At my step daughters graduation it was first in gets the best seats. I was trying to protect my mother in law from getting pushed around as she has osteoarthritis and is pretty fragile. A middle aged woman, closely shaved head held high, pushed us aside and when I protested shouted at me " I have Cancer!" Without even thinking I yelled back "So do I!". It was a surreal moment as my cancer bore no outwards signs yet I would never dream of acting as she did even if  mine was visible.  I would call that using your illness as an excuse for rude behavior,  for not following the rules that all others have to follow.



 Take a look at 'When I Walk' by Jason DaSilva for an idea of what that 'thing' is that defines a person beyond their illness. I highly recommend watching this film, it is simply amazing. (Available on Netflix streaming or dvd.)
Jason is a person who took the cards he was dealt and kept on playing. He could not even finish editing his film on his own as his hands were no longer functional, but here it is with the help of his wife Alice Cook. I am guessing if you met him, MS would be about the last thing he would want to talk about. Unless it was about curing it,  improving peoples lives who have it or wheelchair accessible taxis and buildings.
More on Jason Here
Jason DaSilva In Action


So on diagnosis, I first thought I must fight, I must find a way to get this thing out of my body, a way to live. Then a friend suggested that rather than fight I accept that this illness, this CLL in my bone marrow and blood was actually a part of my physical body. So why would you fight yourself? Rather, he suggested to make peace with it, accept it if you will. That does not take away responsibility in fact, it makes it very clear that action is needed and that is it up to me, not anyone else, to figure out what that action needs to be.  That is a different mindset than letting my illness 'be' me. Of using it as an excuse, as Coach suggested some might do.
On a Saturday Run


What have you done upon learning you had a serious illness? Think about what you would do if you received a diagnosis of a disease, which path you would take at the fork in the road of life.  Share your thoughts in the comments and either you disagree or agree,  that's ok, debate is good for the soul.. and stay tuned for Part 2 of this discussion next week. You know I have more to say on this!

Ciao!
Debbie
 xo

4 comments:

  1. I love you Debbie!!! You're beautiful ❤️❤️

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  2. you are my sunshine, my only sunshine, you make me happy when skies are gray! <3 <3 <3

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  3. Thank goodness for the internet, it makes life a lot easier when determining if one is meant to sulk and muddle through or be proactive. There are so many great role models, like you! Mwah!

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  4. Thanks for all the love and encouragement you have given me Kimberly! MUAH back!

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