to my friends and family out there who've been feeling neglected...
my dear husband, my sister julie, and my doc will testify to the fact that i've been in quite a funk for the past few weeks. yes, your phone calls and emails have gone unreturned. and no, i'm not proud of that. there have been times recently when i haven't had the energy to dial the phone, let alone engage in conversation. and here's the deal, i would have engaged in phony, happy conversation with you, and you would have never known that i've felt more hopeless lately than i have since my initial diagnosis in 1997. it's the pretending that gets me...
pretending is so exhausting.
pretending that i'm okay. right now, i'm not okay. but maybe, i'm getting better.
i finally saw my wonderful doc yesterday, who is so patient and understanding and reassuring with me. no, i'm not f ' ed up. yes, i have a brain disease. no, i'm not going crazy. yes, it feels like it. when you're in the fog, you only see the fog. you don't realize there's a bright sun and beautiful blue sky out there. you try to take people on faith, that everything will work out...but when everything around you is clouded and skewed, you begin to doubt yourself...your sanity...and the fear becomes all-consuming.
if i could only describe that fear for you...
i prayed for my doctor all day yesterday before my appointment, asking God to give him wisdom and the right words to say. we have changed my medication, effective immediately. i had been on lexapro since 2002. doc said maybe it was time to shake things up a bit, just in case the lexapro had pooped out. i agreed. (if you could all throw up a little prayer for me and my new drug regimen, i would appreciate it.)
the fear that comes with this disease causes me to doubt my worthiness of god's love and mercy. in times like these, i find that, like the tax collector in Luke 18:13, i am unable to look to heaven, but instead continually pray, "God, be merciful to me, a sinner."
and i cry in comforted thanksgiving at this piece from brennan manning that i posted a few months ago...
the following is a great clip from the documentary "no kidding, me too", with dr. chris stewart describing the ridiculous relationship between insurance companies and those seeking to help individuals with brain disease.
"We can perhaps remember - even if only for a time - that those who live with us are our brothers; that they share with us the same short moment of life; that they seek - as we do - nothing but the chance to live out their lives in purpose and happiness." - Robert F. Kennedy, 1966
robert kennedy fought for the poor and disenfranchised, the dispossessed and powerless. his son, robert f. kennedy, jr. continues the fight. the younger kennedy's words near the end of the speech below (at the premiere of the "no kidding, me too!" documentary) are eerily reminscent of his father's:
"america is a place where we're supposed to build communities. we’re not going to be judged so much based upon the wealth of our citizens or the size of our armies or the throw-weight of our weapons or the power of our industries, but how we care for the least fortunate members in our society, how strongly and robustly we fight to include all the members of our community, no matter what their disability, andhow strongly we avoid the seduction of the notion that we can advance ourselves as a people by leaving our poor brothers and sisters behind. we have to go forward as a community and we have to include the people who are the most vulnerable, the most alienated, in the most pain and agony. our response to that in the past has just been to add on cruelty. and joey’s [pantoliano] up there saying we can’t live that way anymore. that it’s bad not only for the people who suffer this disease but it’s bad for all of us to live in a society that condones that."
how beautifully put.
(mr. kennedy's reference to "joey" is joe pantoliano, mental health advocate and founder of "no kiddding, me too." also, mr. kennedy suffers from the neurological disorder spasmodic dysphonia, which makes speech difficult.)
"A religious man is a person who holds God and man in one thought at one time, at all times, who suffers harm done to others, whose greatest passion is compassion, whose greatest strength is love and defiance of despair." - Abraham Joshua Heschel