Who is your best advocate?

The chronically ill need advocates.  This past week, , Jennifer Jaff, a valuable figure in the legal rights world for the chronically ill died from  ‘complications from crohn’s disease’.   She’d learned in childhood about living with difficult, unpredictable illness.

Jennifer Jaff was  smart and dedicated to her task.  A ground breaker in many ways,  the services  she provided were sadly unique.

Legal rights are a critical piece in the effort to allow those living with chronic illness  to live fruitful lives.  But as you might have noticed,  my focus is much smaller.  My  mission is to assist individuals in discovering how they can shape their lives as positively as possible.

Each client call reminds me how hard this can be, regardless of the person’s ‘external’ situation.  This life requires personal vigilance.  Just yesterday,  I  ‘ran into myself’ trying to navigate between my different needs — sound familiar?

As a relatively observant Jew, I fast and spend hours on my feet in synagogue on Yom Kippur.  On a good day, it’s a challenge when you have multiple health issues.  The fast is typically broken with a big meal (you need something to look forward to!) called  “Break Fast”.

At some point many years ago,  I decided we’d do this event.   So after not eating all day,  we host between 15 – 20 people in our home to eat, drink and relax.  Most years it’s ‘doable’ and I’m always glad I did it.

Not this year.  An hour before start time,  I was tired and my body was “breaking down’ — the eye with bad vision more blurry, my feet hurt, my balance precarious and bladder bad.  Even though I didn’t have much I had to do to be ready, it was  too much.

I couldn’t  have predicted this.  I’d been relatively well recently.  Unpredictable is so  ‘messy’.

The upshot is that I didn’t enjoy myself.  Too many times to count,  I’ve felt lousy but still had fun and was glad I did it.  But choosing to doing something and waiting for it to be over  because I’m in such bad shape — that’s worth listening to.

This is what I learned:   Doing a physically taxing activity has to be worth it, it has to yield a big benefit, particularly when the choice is entirely mine.  It’s not a question of keeping my job, pleasing a boss or having the legal support I need.

Sometimes, having full choice and owning responsibility can be even more of a burden, can’t it?  I’ve decided, after 22 years,  we won’t be hosting this event next year.

Living with chronic illness means being resilient,  ‘light on your toes’,  sorta’ like a prize fighter or a dancer,  so you can bounce back and fully respond to what’s happening, in that moment.  This is the easy stuff to deal with.  But practice makes the harder stuff easier, don’t you think?