Monday, September 7, 2015

You gotta have friends

A friend in need is a friend indeed. No truer words for me because I need my friends like never before. They come through in spades.  Or seven no trump,  grand slam style. Being this sick has created change in all my relationships. I am overwhelmed at times by the positive affect this disaster of a disease has had on my relationships. I have experienced a deepening in connection that,  while not entirely surprising given the high caliber of my friends,  is still mind blowing. Thanks aren't enough so my dear friend(s) I hope you know how much difference your place in my life means. Thanks for bringing perfection into reality.f

Sunday, September 6, 2015

why am I so lazy?

I need to have a shower but I ask why. Ditto,  brushing my teeth. Even going to the toilet I put off till the last moment.  These activities of daily living (ADL) have become so arduous I now put them off. Unable to assist in anyway,  I am thrown around. This is not anyones fault,  it's just a matter of gravity and reality. No to a hoyer lift so don't bother suggesting one. In fact,  while I'm rejecting that potential solution,   let me also say that many people,  in their hope to be helpful frequently offer suggestions that have already been considered,  maybe tried and rejected. Unless you really live with this disease (i.e.,  you are my caregiver or other primary in my life) you probably are just wasting my time and yours and these days I am too lazy to explain to you why I reject your proposed solution to a problem I mention - like constipation. When I need a solution to a problem,  I think of who might have a particular skill set and I actually ask for problem solving help. Saying or complaining about not being able to shit is not a request of you to advise me on the need for more water,  or fiber,  or whatever. Not to be ungrateful but can't you just be sympathetic when you ask me how I'm doing and I tell you the truth?  Or we can just talk about the weather...f

Friday, September 4, 2015

eye gaze

I am writing,  letter by letter,  on a technological wonder,  using only my eyes. There is a camera attached to the computer that has software that picks up (when I'm calibrated properly) where my eyes are looking. My eyes are your fingers Totally fabulouS idea. Actual execution of idea into reality is a cdifferent story.  I am really missing the good old days.  And I am pissed off knowing the technology should and could be so much better.  Especially for the price.  And the gross necessity of such equipment almost always instigates a fight with insurance both private and medicare/medicaid.  Like helping someone like me who can't adequately communicate 6giverbally,  6gi5gi5giis a unnecessary luxury.  okay i am not going to go back and correct the preceding mess. Needless to say,  working with this very expensive software is a lifeline,  but that does inot make it good.  I feel like I'm driving a 1986 Ford Pinto when I paid for a late modal Lexus.  come on,  we gotta do better! And we can dammit (well,  not me,  per se,   but wtf is up with the Apple geeks? 

Wednesday, October 16, 2013


Sadly my brother left us.  I am utterly defeated, my heart broken, sadness overwhelming. At same time, my significant other grows more careless , distant and withdrawn.  Emotionally cruel.  Dropped me on Thursday, not intentionally, just not present or paying attention.  No broken bones, hut sprained wrist and very bruised ribs.  I grow weaker by the day, more physically needy and dependent. Need a plan to leave husband, have 24 hour care.  Between rock and hard place.  Not safe.  No safe place to be.  Emotional & physical hell.

Friday, April 19, 2013

My beautiful big brother

I want to say beautiful words to describe my dear brother but I am not creative enough or talented enough to do so.  He who has protected me, taken care of me, looked after me my whole life, is sick.  Very sick.  I have no words to comfort him.   I do not know what to do with my own feelings and emotions.  I feel so inadequate.

He called me yesterday, despondent. He tells me he just needed to hear my voice because I was so inspirational to him.  How can this be?  He is my hero.

Craig was always there for me (I have long ago forgiven him for his torturous treatment of me - the kid sister) and now I think, shit, is he paving the way to death also?  I want to tell him to give that up,  he can stop, he doesn't have to go that far to be the best big brother anyone ever had.  He does not have to die first. Get well damnit!

So here we are, both with tragic diseases and I wonder who will go first.  In spite of everything, he is fighting the nasty cancer with everything he has.  He has not given up his hope for recovery. And I have merely strived for acceptance in my own situation.  No battle for me.  Although death is foremost on my mind, and what that means to the life we still have, I cannot have that conversation with my brother- he is not ready to discuss that subject.  He is not there.  And so I try my hardest to be supportive of his process.

I love him more than words can say.  Thinking of losing him makes me weep.  Me, who wants to be so centered, philosophical!  I cry for myself, I cry for his kids, I cry for his wife and my mother and father and sister and all the many others who love him so very much.  I cry for him because he is not ready to go.  And we are not ready to let him go.

Is this how people feel about me?  How can I be better at helping those who love me better accept my death?  It is easier to die first I think.