It’s been a week since I started this blog…this commitment to my brother…and now I remember why I stopped answering his calls so many years ago.  Because people like Ed, people with many needs, like the rest of us, but with fewer abilities and resources often learn one very good skill…the skill of asking others for what they need…and asking and asking and asking.

There is a children’s book called “If You Give a Mouse a Cookie.”  It talks about the problem with giving a mouse a cookie…is that then he will want some milk…and with that milk he will want a straw…and then a napkin and then…and then…and then…and eventually he will want another cookie and the need list starts all over again.

When Ed first came out of his coma he was very demanding.  For years he was angry and demanding…over the decades he simply became demanding. Every small need became an emergency.  He blew up my sister, my mother and my phones with calls and voice messages. It was his frantic sense of urgency over every perceived need that became overwhelming.  When I spoke with him about it…a million times…it changed nothing…and so I slowly stopped answering his calls…stopped getting him his perceived urgent needs like fig newtons and instant coffee and whipped cream.  And when I stopped, he simply took his needs elsewhere.  He pretty much knows what I will do for him..what my sister will do for him…what the kind guy at the jewelry store in the mall where he goes daily will do for him…and what each staff member at the facility where he lives will do for him.

Because I have begun to call him daily I am now back on the list of people who will do for him.  Its awkward.  It isn’t fun like asking him how old our mother is.  It makes me feel used.  It makes me uncomfortable like the guys standing on the street corner with cardboard signs staring at you while you wait for the light.  Sure I have plenty of cash in my wallet that I could hand them….but, if you give a mouse a cookie…

The truth is he isn’t asking much…mostly he’s on the “Will you bug Vickie” kick.  His current obsessive needs are things he has decided she needs to do…check into wireless for his computer because the dial-up is too slow for most programs these days…get him some business cards.  His only request of me is to bug Vic.

So how do I stay in relationship with him and deal with the uncomfortable reality that his major way of relating to others is to see what need his disabilities keep him from filling?

This is a current national debate going on…isn’t it?  If you give a mouse a cookie…if you give a mentally ill person disability…if you had the homeless guy a buck…if you give food vouchers to the unemployed mother….

I am a bleeding heart liberal…and yet accepting Ed’s neediness…being constantly bombarded with requests…has kept me from being in relationship with him.  He wears me out.  And then you start to get all the requests from his staff.  He gets them to bug you the way he gets me to bug Vic.  And that is where the word of the day comes in…condescension…because there is something in the way a staff member asks you to meet your brother’s simple, but ever present needs…that raises hackles.

A friend of mine is in upper management in the organization that runs my brother’s program.  I remember her telling me about the process in which they came up with their mission statement for the program.  They had been so proud that they had found the idea of “doing for others what they cannot.”  I was so annoyed at the condescending tone I heard within the words.  To me their mission is to trade services…they help him do what he cannot and he…through his Social Security Disability and Medicaid he helps them pay their bills…employs them…give them their sense of purpose.  It is a fair and equal exchange.

But then again it could be that I hate to think of my brother..the one whose greatest strength when we were growing up was his physical strength…needs a mission statement that must speak of what he can no longer do.

I started this blog…so I will continue on…and see if I can see past his needs…to be in a real relationship with him.  I will give a mouse a cookie…