Suspicion, Sacrifice, and Still a Warrior!
by Catherine J Rippee-Hanson
It is always difficult as we try to sort through what we and others think is happening... what is supposed to be happening... and what is actually happening. We seem to constantly be shocked and surprised even as we strive to understand what our brother, Mark, is experiencing in his confusion and delusional state of being.
There does seem to be more going on than meets the eye with some confusion surrounding the facts concerning his current status. We are working behind the scenes, as usual, to figure it out. Having no legal rights regarding his medical needs, financial information, or benefits leaves us in a very frustrating position - preventing us from helping him with all his needs and ensuring his protection from others who might take advantage of him
We feel helpless most of the time as we spend our days learning about and advocating for him in the hopes that the laws will be changed and that before either of us dies - we will have the family rights to help him as much as we love him.
I don't know that I can compare the level of pain and frustration that we live with due to our inability to change his circumstances with some degree of certainty.
It is especially saddening when people assume that they know us when they do not... and judge us so harshly.
We have the right to protect our brother. In our efforts, we have the right to fend off intruders and interlopers. We have the right to say what we think regardless of how uncomfortable some people find it. Those are the only rights we do have. Can you imagine how we get frustrated when those are the only rights we have... but they don't help Mark?
If we did nothing... oh, would we be judged and vilified! But when we fight for Mark's benefit, we are judged as well, and rumors are spread about his family's "red flags" and our "true intentions"!
My God. Oh, my God... Our intentions are to protect him and find safety for him to the extent permitted by law. To keep his benefits flowing and working to help him... To keep him as healthy as possible... To ease his tortured existence by finding a treatment! A safe home, a warm bed to sleep, with the care that also includes supervision of some sort or even just assistance. Why wouldn't we want that for him? It is unfathomable that his basic needs are not being met, yet we are powerless to even make binding decisions for him, or choices for that matter, as his "civil right" to die on a sidewalk is accepted in our society as a solution to the homeless, psychotic, seriously mentally ill people who may not even know they need help.
The only thing we have to gain from our efforts is the possibility of him having a better life. What exactly do people perceive we are going to gain from this? We work every day and struggle to find ways to help him around the archaic laws we have for someone with no insight into his serious brain illness. We receive no compensation except a small satisfaction from occasional small improvements made sporadically and often stripped from him anyway. We give him money and clothes and food and coats and sleeping bags only to have them disappear once he is on the streets.
Yes, some in the community have given him food, used clothes, blankets, or whatever he needs occasionally. But we have never, ever asked people for money for him. In fact, I personally have turned down money offers because money is not what he needs and may even interfere with his disability benefits. I have repeatedly declined the idea of collecting money or setting up a Go Fund Me page. That will not solve his problems or meet his true and realistic needs.
During times of need for him, we have collected donations of used clothing or bedding. Our community offered gift cards for fast food places, and 5 people provided $25 gift cards for meals locally in the last 3 years. We gain nothing.
I write this blog about all the aspects and obstacles of his suffering and needs. I earn nothing -- in fact, I'm spending money on the blog, the domain, and the marketing.
My twin and I have written for other people's blogs and books - without expectation of compensation. We then purchase the books and send them to lawmakers and policymakers in hopes to see Mental Healthcare for all the Seriously Mentally Ill in our County of Solano, State of California, and our Nation.
Arguably, that isn't much, yet I am 100% disabled myself, living on a meager fixed income, confined to a wheelchair or homebound, and struggling to stay healthy. I don't expect pity or sympathy from people for my situation as compared to what Mark goes through... but the fact is that I can't physically look after my brother in a home or on the streets.
My twin sister does what she can, but she already looks after our 81-year-old mother. At 63, we are neither young nor full of energy. While my medical problems are severe and incurable, she too has medical problems that hinder her.
As to needing attention? Lord, if I wanted attention, all of my other talents and loves could be used for that. I wish my brother had a compassionate environment with treatment and care in order to be as healthy and happy as possible. Like everyone, I have my "druthers." The goals I would like to focus on.
While I think that what I'm doing is precisely what I'm supposed to be doing - I have other dreams besides being a Mental Health Advocate. The book I was writing, but completely set aside years ago so that I could write petitions and letters to politicians... My love of song soared in expression, but I put my music equipment in storage long ago... I enjoy completing art projects, but now I stay up all night thinking of ways to help Mark... just like I am at 2:30 a.m. right now.
However, people are so quick to judge, and their perceptions of families like ours can be so distorted. We are surely damned if we don't and damned if we do.
Someone once asked me if I thought of life as a series of battles to be fought and won... After 33 years of trying to get help for our brother, I can honestly say, "Hell, yeah! That is what I am certain of... because that is how I have lived my life."
Perhaps that is the reason I am so obstinate and brave enough to stand up for what is right. Values have no worth if you do not have convictions of your principles. You have to fight. Whether I am talking about my brother's life or my own, I have always fought and overcome obstacles - and succeeded. I have resiliency. I am an experienced warrior. That's something I'm proud of.
I will not apologize to those who will feel uncomfortable or cringe when I say what I have to say. I am not apologetic for being straightforward, honest, and yes, even blunt at times. You have no right to call yourself a warrior if you don't stand your ground and do and say what's needed.