all

yeah, you could get hit by a bus

But please don’t pretend it’s the same thing as battling a terminal illness. “It could happen to me! it could happen to any of us.” M’kay.

But coping with a progressively more aggressive and debilitating life-threatening illness is NOT in ANYWAY the same as suddenly being killed.

A doctor didn’t tell you that you have an incurable cancer that may give you only have a few years to live, that you have to address your mortality and treatment and spend all of your family’s time and money treating an illness that may, in the end, leave them without you.

This is about “how do you keep yourself alive?”and  “what are you willing to put your family through to do so?” This is about struggling over the best treatment options based on how much time and quality of life it gives your family, the agonizing decisions you have to make in deciding how to live the next few years, and prepare your family emotionally, psychically, spiritually and physically.  It’s not the same thing, as a random accident.  In fact, the act of having to go about your daily business, while enduring the stress of how you are spending each moment, is a difficult reminder of how very different worlds are that we live in.

I mean, for me “really living your life” doesn’t meant jumping out of an airplane or meeting a celebrity or getting that big promotion. That’s how people “live” when they know they have life ahead of them. their personal experiences are everything to them.

I need to make memories for others, not myself.  “Living” each day, to me, is ensuring that I have left a legacy in the wisdom I pass on to my child, in the way that I have arranged for things to be executed in practical terms, in finding time the to express myself creatively.  It means dragging my tired bones out to chaperone a field tri,p or focus on making sure finances and long term care insurance are in place to prevent my loved ones from an onerous burden. It means sacrificing financially to ensure your child has a community to support them when you are struggling or gone. It means coming up with a plan of care for yourself that extends your life without somehow destroying the lives of those you love.  Do I wish it were a trip to Europe?  Heck yeah.  But what is truly a priority, is what your focus becomes when you are truly forced to understand your time here is not only limited, but that while you are here you may be a burden on your family and loved ones.

We all think about our children and their well-being and future.  But we don’t all have to think about the fact that they will see you ill and suffering and possibly die in the near future, and feel the pressure to prevent suffering and undue stress that comes with an illness that never goes away. This is not the same as a random accident or dying unexpectedly, I have seen what comes down the pike for us and i have the duty and difficulty of preparing myself and my family for that while continuing to live.

#livebeyondmyeloma

 

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