The Choice to Use Your Voice

I will re-state again, what I have said before that those of us living with mental illness often choose to hide in the shadows. To explain our struggle to others and be misunderstood or even shunned is sometimes too overwhelming to cope with. Instead, we choose silence.

Since I have come out with my story and video, I have gotten calls, messages, and confessions from those struggling for many years themselves. Then there are family members wanting to know how to deal with a loved one. During my process of speaking out loud about my struggle with living with mental illness my whole life, I have lost friends who were never real. I have cried tears mourning the loss of those friendships that I once held dear. The silence has been deafening at times and yet those crying out to be understood haunt me. Therefore, I choose to continue to speak out.

Some have called me brave and strong. Others look with pity at my perceived weakness. There are those that just look away. Although I knew that my story would bring out sides of people I didn't want to see, I also knew that it had to be told. This is been my forever journey and my ultimate path in life. No matter how hard I've tried to ignore it, I was called to bring my voice into the mix of mental illness.

My book wasn’t done when I wrote this. It had not hit the shelves with its story. It has just been my blogs and my Facebook page speaking. That alone brought so many things with it that I found myself wanting to continue this journey more fiercely than ever, instead of running and hiding and turning back to the safety of anonymity. I don't think I've ever cried so many tears in my life as I did hearing the truth of others stories, who like me, have been fighting this fight for a long time.

Then there are the young, just receiving diagnoses. Just as in my life, they are turning to drugs, alcohol, sex, inflicting wounds on themselves with self-harming simply trying to stop the pain of their disorder and not wanting to accept the diagnosis.

I have met those completely cut off from their families and friends. They are alone in this journey without an advocate to speak for them. They go from doctor to doctor, inpatient and outpatient hospital stays, isolation and despair. To look in their eyes, is to realize the truth of this journey. None of us asked for it. None would want to share it. Yet there it is and so we deal.

When I volunteer to attend meetings at NAMI (National Alliance on Mental Illness) on a weekly basis, I find myself in a place where the mentally ill can speak their voice, their true voice, and be heard. They can let out the pain of the journey and receive acceptance for who they are. I have come to love each and every one of them. These Warriors, who like me, continue fighting to live each day to the best of their ability. Sometimes I cry the whole way home on the car ride, because I want to take them home with me and help them or just have them not be alone. I am a fixer and I want to fix them and help them. I want to help myself.

Every week at NAMI I’m made aware of how much work needs to be done in this domain and how little society has done in this huge fight to help the mentally ill. I am awakened to the urgency and I want to do more.  Faster, bigger, fix it somehow. I am but one voice.

My husband has stood by me, under extreme and insurmountable odds. He has been my advocate, my caretaker, my life raft in an ocean of suffering. If I had a physical illness, like diabetes or cancer, his family would probably understand better why he stays in this marriage. It is hard, with all the upheaval that mental illness brings with it, for them to understand his steadfast devotion in spite of the turmoil. It has left a rift in my relationship with his family for many years. My symptoms have also taken a great toll on Joe and I financially and his family realizes that, were it not for having to take care of me, he would be much better off. With doctor's visits, hospital stays, bipolar spending binges and not being able to hold a full-time job it has certainly taken its toll over the years on our finances. I can tell they feel bad for him and the situation and don't understand the complex circumstances you deal with contending with mental illness.

I do not blame their judgment of me. I realize I am misunderstood, as are many that suffer from mental disorders. Why can't we just snap out of it? Why do we exhibit the behavior we do? I know the toll our symptoms put on others who choose to stay with us.  I see the pain in my husband's eyes, and I know what my only daughter has endured having me as her mom. Why does he choose to stay and not abandon me in this journey? To their credit, his parents have come alongside us many times during our marriage and have helped us financially and even put a roof over our head when we could not many years ago. They have tried their best to understand my condition. I have much to thank them for and yet know there will always be that rift.

I write about it in my book, how a week before our wedding, my husband called off the marriage. We had known each other less than a year and the realization of the journey ahead was too much to bear. In total devastation and heartbreak, I understood his decision. When he changed his mind and decided to walk down the aisle with me and take me as his wife, he explained, someone had to do it. I've never understood that statement. He tells me now that he thought, "how bad can it get?"  Little did he know.  He did not have to do it but he chose to. In retrospect, if he would have chosen differently. I can say with certainty that I would not be here to talk about it. I would have been long gone, having taken my life by now.

When I hear the stories at NAMI of how their families have abandoned them for the most part. They are my peers yet they are voiceless and hidden. The lost and uncared-for. Yet there are also those whose families choose to stay and help. I know a mother whose 48 year old son struggles greatly with schizoaffective disorder (a blend of schizophrenia and bipolar).  It is very disabling and difficult to manage. She is a champion.

For those who don't understand or choose not to, I want to explain and have you understand that my husband is a Champion. He has chosen a life of sacrifice and lived a life of devotion. You don't understand how strong he is. I do. My daughter does. Our son-in-law has witnessed my husband’s sacrifice and looks up to him for his testimony. You see my husband is a very rare and needed commodity for those of us on this journey. Have there been times when he has wanted to walk away in utter frustration and hopelessness? Of course, the fact that his own family doesn't understand his journey only serves to undermine his decision to stay.

"Empathize, Educate, Advocate" is my mission statement. You see without empathy for the mentally ill, you will not want to educate yourself as to what we deal with. Without education, there can be no advocacy. My husband doesn't sit with me in doctor appointments for med checks or strategy or accompany me to therapy sessions for the hell of it. He chooses to go to get educated so he can advocate better on my behalf. There are times I need him to speak for me, when I am rendered incapacitated and unable to speak for myself. He is there with education, empathy, willing to advocate for me.

Sometimes I feel I am whistling in the wind. My voice and my tears return to me useless. My book isn't even out and yet there is so much to be done. I have found that, in coming out, I really do not blame anyone for their take on what I have chosen to do. I cannot afford to allow the opinions and judgement of others, family or not, to dissuade me on this journey. As I said, one voice. Martin Luther King, Helen Keller, John F. Kennedy, Carrie Fisher, I could go on and on for those who chose to be one voice. They are my sustenance, my heroes and my guides. They whisper to me to continue my journey.

Even my publisher has had to deal with my many displays of symptoms that she was very unprepared for. You can explain it to someone; but it's another thing to live it. Her choice to continue to add to my voice and help my story be heard makes her a hero. We have great misunderstandings and disputes at times, about how this project should be accomplished. Yet the fact is we are both dedicated to accomplishing it. That is the difference. When you put all the noise and clutter aside and focus on the goal. When in spite of the hardship you choose to continue.

Forgive me for indulging in a rant about what I am experiencing since the release of my video. It was necessary for me to explain what this feels like. For those of you, who support me and are with me on this journey, thank you. For those who don't, carry on, and so will I.

With you in the Journey,

Alice

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