As an American Curbside Caregiver and SMI/SBD Advocate Linda Rippee Privatte supports her disabled blind brother with a serious brain disorder who has gone untreated for 34 years.  Since then, he has been homeless for 14 years.  She is one of two twin sisters who advocates for change in the United States, also known as ‘Twin Tag Team’ and more recently as Twisted Sisters Advocacy & Activism for Serious Brain Disorders. They each do things the other cannot.  Her twin, Catherine, is skilled at social media awareness, advocacy, and education, but Linda is the last family member capable of reaching Mark on the streets and providing him with the necessities of life.

 

To my younger and only brother, Mark;

I grew up believing that love could fix anything…that love conquers all. That love would carry us through any situation.  I believed that family never gives up on family.  I had always been accused of being too emotional for my own good.  I was devastated  and in shock over your original motorcycle accident that happened in 1987 and you lost 1/3 of your frontal lobe in a massive Traumatic Brain injury, your head, face, and jaw were wired back together.  Metal plates were put in your head.  A metal rod was placed in one leg and what we thought was the worst of it was you lost both of your eyes.  The doctors told us you would have brain damage from the TBI and if you lived, you would be 100% blind permanently.

I stood outside the doors of the ER with Dad after many doctors told him they weren’t sure they could save you.  He expressed to me from a very dark place that he wasn’t sure that they should save you.   We all thought blindness was going to be the big tragedy in your life.  Dad worried that you were not strong enough to adapt to your life sightless.  Your ability to deal with blindness was almost your super human power.  You amazed us.  We were told you would have brain damage but we didn’t comprehend what that would mean for you.  We could not have foreseen that your future would come to include a serious brain disorder just a few years later.  The anosognosia has been a hurdle we haven’t been able to get over.  We were so naïve’.  I so wish we knew then, what we know now!

That night outside the ER I begged Dad not to give up on you.  I expressed my love for you, my only brother.  I thought we could love you through anything.  Dad told me that all I would ever have to offer you is love, and that love would never be enough.  I didn’t want his words to be true.  I still don’t.  Love might not save you but I will always offer it to you.  Promises were made to you and all with good intentions.  No one in the family knew then about serious mental illness or the wreck of a mental health system we would face in attempting to navigate and to advocate for you and your care over three decades.  We could not have imagined that the last 14 years you would be homeless with anosognosia and no treatment for your no fault brain disease.  I would have never believed that our laws would prevent our family from seeking treatment you so desperately needed.  For over 20 years we managed to care for you, but when you became homeless and the anosognosia prevented you from accepting help is when I really began to understand the depths of the battle you were facing.

I’m so sorry for the broken promises that became impossible to keep.  Always and forever lasts a long time.  Now my promises sound empty to you.  These broken promises keep me awake at night as you sleep on the streets, blind, with serious mental illness, and as broken as my promises.   I have so many apologies to make to you.  I’m sorry that we made impossible promises to you that we would never be able to keep and that others prevented us from keeping.  I’m sorry that a true and accountable mental health system does not exist for the SMI.  I regret that I have not been able to remove any of those barriers that have prevented your care.  I’m sorry for the fear and danger you live in daily and especially your pain and suffering.  You deserve to receive treatment like any other person with a physical disease.  I’m so sorry for the SMI that is the overwhelming darkness in your life, more so than the blindness.  I feel the need to apologize to you for the world we live in that would allow your situation to continue without acknowledging that changes are necessary.  I love you.  I’m trying to keep you safe and I apologize for the inadequate job I have done.  So many people have harmed you.

I have found you on the streets and been your Curbside Caregiver for 14 years now.  When you were a child you would always look at me with your silly boyish grin and say, “ Please, please, Linda if you love me!”  It always seemed to work for any request.  I couldn’t say, “No.”  Your needs out on the streets have you using that same plea to me, ”Please, please Linda, if you love me!”  No silly grin now, just desperation in your pleading. I do love you and that’s why I keep searching to find you to care for you and fight the injustice of mental health laws at the same time.  I’m trying to keep you alive with my care.  Please forgive us for the mental health system that continuously collapses on our backs, ties our hands and blindfolds us through HIPAA.  I’m so sorry for the discrimination, the inadequacies, the ignorance, and the lack of empathy that you face on a daily basis.

Dad might have been right that my love would not be enough, but I still keep coming to you and offering my love.  I keep finding you.  I keep fighting for you.  I keep seeking the treatment you need.  I keep loving you and making sure you know it.  Maybe love is the only thing that lasts always and forever…not promises. At the first public meeting where I spoke publically for the first time, I told Solano County that I would make sure they knew your name, they would come to know your story, and I would be back to tell them the end of your story…a promise that I will keep.

I love you.  A promise I can keep.

Your sister Linda