The Toughest Week & Best Advice

11 05 2008


The toughest week is coming to a close.  Unbelievably, I am actually happy now.  I’ve eaten designer cake shaped as an underwater sea/still life and I am full.  I am dressed to the nines and have on my dancing shoes.  I bought a polka dotted cane (literally) this week and feel on top of the world.  Of course I’m not on top of the world.  I’ve bounced 2 checking accounts while trying to pay for all of my medical bills.  I was seconds away from splitting up with Jax, the man of my life and the potential father-to-be of my so far non-existing kids.  I cried so much this week that I filled drought-ridden countries with an endless water supply.

CARETAKERS NOTE:  The irony of being a caretaker is that if they can’t get out of that role fulltime then the relationship will evaporate before everyones eyes – but yes, there is a correct and incorrect time for all of this… (Read on). So what I did was this:  I realized that Jax wants change.  He’s finally breaking out of the caretaker mold that he created for himself.  He decided he needs to stop being a martyr.  He realized that he MUST take care of his needs also or we will never last.  I’ve been trying to tell him this info for a year or more.  He needs to go out and get drunk with his buddies and play games and let me stay at home.  He has to do these things to take care of himself or else we will implode.  I’m not kidding or trying to be funny here.  I truly believe that if he continues depriving himself of living then we will both be miserable anyhow.

The reality is that I don’t have time for self-pity.  In an even harsher focus of reality – I won’t even have enough time to fit in all the things I love to do before I die.  I need to have more hours of afternoon sex where the sun pours in just so while the room is that perfect temperature that you don’t even need to pull a sheet over you.  I need to take a train ride in Siberia and a rope ride in the Mayan Riveria.  I need to read a million more books and watch a zillion more films.  In between all of that time I need to ran naked in the desert playing hide and seek with my lover.  I need to have my child laugh in the bathtub and make us laugh while trying to pull a sweater over their head for the very first time.   I need to take Jax to the top of the Empire State Building and to have dinner at the Eiffel Tower.  I need to make a total ass of myself while I try to rap at a karaoke and I need to have an important conversation with someone high and mighty while I have spinach in between my teeth.

So I’d like to give this toughest week between Jax and I the attention it deserves, but the reality is that I just finally decided that fighting for my stance or point every night for a week was futile and that I don’t have long enough to live to get into more nights of endless pain over our relationship falling apart.

TIMING – WHEN IS IT TIME TO BREAK THE MOLD: I am finally getting the right medications and am with the best doctors.  The moment of crisis is over.  Of course the danger is still very much with us – but the emergency is over for the moment.  Jax must break out and have his own life… if not right now then we will never last.  I insist on him getting out of the house to get away from me.  I have also started being able to go out a bit more frequently.

SICK OR NOT  _ HERE I COME: We can not live forever in fear!  We can not keep living for our worries and nightmares – it’s time to just go out and live: wheelchair, cane, dancing shoes, whatever the case may be for that day…but we can’t continue being recluses and shutting out the world forever.

CARETAKER FINAL NOTE:  I want Jax to have a good full life.  I hope you are with a mate who understands that you need to have time away from each other.  Please don’t feel guilty for having fun.  If the person (with the chronics pain or illness)  really loves you [and isn’t just using you to have someone around so they aren’t lonely] then they will feel joy for your joy, laughs for your laughs, and love you even more.

Thanks so much for reading…love, Sasha xoxox




One response

12 05 2008

Hi Sasha,
I do have a significant other and I’m glad that we have our own activities outside of our relationship. I remember telling her about my diagnosis of RA and she was devastated and worried for me. Like most things in life, it’s a low hurdle that will slow me down a bit but there are many other activities in life that I look forward to and I will take it one small step at a time to achieve them. Thank you for all of your insights and courage for myself and others. Have a good weekend!

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