Tuesday, January 27, 2009

I guess I would like to talk a little about how mental illness affects family. In this case, a sibling. I think it's safe to say that I have had a rough time accepting my brother's illness. Since I am a very nostalgic person, I often compare the past to the present. I dwell on how happy my brother was before his diagnosis. Everyday is a struggle for him. He seems to have a hard time making sense of everything that is happening. It must be very hard. 

The first time I had a chance to talk to my brother (after his first break) was over the phone. He was in Italy, heavily medicated at a hospital. He did mustered the strength to turn himself into the embassy, though. The first words he uttered were, "Amber, what's happening". To this day, I still remember how fragile and helpless his voice sounded. It was at that moment that I had my first wave of empathy rush over me. I couldn't help but wonder how scared and confused he must have been. Now, after 3 years of coping, so many possibilities run through my head. Will he gain insight, stay on the medicine, never gain insight, or worse, commit suicide. These are the things you never get out of your mind. Some days you worry less, but in the end, there is still this sense of loss. I have lowered my expectations because that's what they tell you to do. That was a hard one to accept. All I wish for now is that he chooses recovery. When they tell you to have patience they are telling you to become numb to the pain. I understand it takes time, but during that time, you can't ignore what is right in front of you. It almost feels like the old Josh is in a coma and he may come back some day. Do I wait or do I accept that he is gone.

I don't want to sound selfish, but I dread phone calls from my parents. The tone of the call is never upbeat. Well, at least with my mom. The call always ends up dwelling on what is happening with my brother. I sometimes feel like I am a therapist during these phone calls:) I have felt that way my whole life...like the mediator in my family. It does put a lot of pressure on me, mentally. I empathize too much and this can be very painful. I wish I could see a therapist, but I don't think my insurance covers it. That is why I paint, it is my own therapy. I sometimes wonder why this affects me so much since my other siblings seem to cope better than I do. Are they stronger? I seem to be an optimist in this situation but convincing yourself that things will get better is difficult when nothing seems to improve. I have to stop getting my hopes up and just accept that this illness has its ups and downs. 

Over the summer, I got a taste of what recovery is like. It was like I had my brother back. He was laughing, joking around and just happy. At the same time, I could tell he was struggling with the weight gain and everything else. Just as my brother is still learning how to cope with his illness, I am trying to cope with seeing him go through it. I am constantly reminded of the boy I grew up with. He is the sweetest person I've ever known. He would do anything for you. I once asked him if he wanted to help install wood floors in my new house. Not only did he help, but he stayed an entire week and practically did all of it. No questions asked, no complaints. All he wanted was dinner:) This happened right before he left for Italy. Looking back, I could tell he was acting different around this time but no family is ever prepared. That is why I want to educate the pubic so they can view others, such as my brother, as inspiring individuals. I just had to vent, thank you for taking the time to listen:) Luckily, I have a very funny husband who makes me laugh. Laughing makes all this pain disappear.


  1. When I was sick, my mother thought she lost me forever. She thought she would have to become my care provider and see me sick all the time. Now that I am well and blog about my experiences, she holds back tears because the experience was so painful.

    You are doing an awesome job educating the public about schizophrenia, Amber. I love your blog and hope the best for your brother. Those pictures show what a beautiful spirit he has. He will fight this illness, because he has a strong sister like you to support him.


  2. Ashley,

    You just brought tears to my eyes. Thank you for your kind words.

  3. Amber,

    I just found your blog, and I love it. I started my own blog about Schizophrenia back before I had insight into the illness or knew that I had the illness. I just knew that I had something in common with the character in the film A Beautiful Mind. I recognized my own life in that movie. This, later, in a hospital, was helpful in me developing insight into the illness.

    I didn't want to take medication. I had to be ordered to stay in a hospital by a judge, and given no choice about it. So at that point, I ended up in the hospital for several months, which was long enough for the meds to take effect more than they did in my previous hospital trips that lasted days or weeks, but not months. It was this forced hospitalization that actually saved my life. I believe it was necessary for me to spend four months in hospitals in order to save my life. Ultimately, it was me who prevented myself from committing suicide, but I could not have done that without HELP.

    Just a few months ago, that hospital that I was in for several months four years ago had their long-term program (the one that saved me) shut down due to state budget cuts. Here in Florida we do not have decent funding for mental health services. I don't know what state your brother lives in, but some are better than others. If there is a way to have your brother committed into a longer term program, where he would stay on his meds for more than a couple weeks, he might be able to gain that insight that you so wish he had now. I understand how hard it must be to watch someone you love struggling with such a difficult situation and not having the awareness to know how to help himself out of it.

    Today, I still have psychosis. I still hear voices at times. I hear what I call "double speak" pretty often. But the difference is, because I do have insight now, I know what is happening, and I know that the things I am hearing are not real most of the time. This is a dramatic difference from the kind of miserable life I had when I thought the voices and words were all real. I hope that your brother can get to the other side of this to be able to have the insight to know that he has an illness, that it is not his fault, that is family loves him and cares about him, and there is safety to be found in mental health care facilities.

    You are doing an awesome job with public education via this blog, and I hope you will continue your efforts. Thank you.


  4. Hi Amber,

    I remember how painful it was for me not to be able to talk with my brother and parents. I was just too sick and that inability to communicate lasted for several years. But it didn't last forever and there's a very good chance that Josh will come around and begin his recovery in earnest.


  5. Amber,
    Acknowledgement of pain and disappointment is the beginning of recovery for us who love and care so deeply for our ill family members. I used to think recovery was something just for the ill, but it's also for us who witness their illness in such an intense and absorbed way. It's been ten years since my son's diagnosis, and his brother still crys and says he misses his brother the way he used to be. This breaks my heart to hear and know his brother feels this pain. As a mom, I want to make things better, but in this situation I feel helpless, for I miss him the way he used to be also. As the years go by, I am trying to accept his illness and focus on who he is now. It's not an easy task for people who are sensitive and involved. I think you spoke about how creative people feel more intensely than others about everything. This might be the difference between you and your siblings. They can some how separate themselves from their brother and view his life from the outside without having to go inside his pain. Your mom is feeling your brother's pain every day, and this is probably why she talks to you so much about it.

    Grieving is part of loss, and allowing yourself to feel okay. I have been grieving for years now, and as time goes by we learn to turn grief into admiration for everything our ill family member has been able to accomplish, not instead of their illness but in addition to it. Be gentle with your feelings and give yourself this time.

    Seeing a therapist is good as I have, and it helped. But please know a lot of the work of acceptance, love and understanding comes from within you. At least you have a husband to talk with who lends support. This is more important than a therapist in my opinion.

    Thank you for sharing your feelings because it makes all of us feel like we are not alone in the struggle.

  6. I have been schizophrenic for almost 4 years now, in my eyes insanity is heaven and hell within the mind, intense bliss and intense horror, and those intense emotions wears a persons soul down very quickly. In all the confusion of my psychosis my family visiting me was the highlight of my day, just hearing their voices helped even when I didn't think I wanted to talk to them. But something that hurt me more then the psychosis was the look on my families' faces, the way they talked to me and acted. I could handle a lifetime of insanity, but watching my family in such pain was and will be unbearable. The reason I take my meds is because one, I know I need it, and two, I do it for my family and friends.

    Stay with your brother, even if it doesn't feel important, it makes all the difference to him. Love is something that even insanity can't distort.

  7. This is one of the best things I have ever read. I am going to send it to my mom. Everyday I wonder if my brother will come back, if he can someday live on his own. His doctor hasn't even given him a diagnosis and my brother still doesn't know what's going on with him. Canada's mental health system lacks far worse than the US. I love your blog. Thank you for this.

  8. Hi Amber,
    Recently you visited my husbands blog and left a comment. This is how I found your blog. I love you're blog and I'm so sorry for your pain. After reading, this post I felt compelled to leave you a comment. My brother did not suffer from schizophrenia, but he did suffer from a mental illness, depression. He died three years ago, September 27, 2009. I know the loss that you feel, I know the pain that you feel, and I know your fear. I felt that way for years about my baby brother. And when "that" phone call came, I almost lost my mind. Still, till this day, it's not much easier to deal with. But, I go on as I must. I miss him dearly, just as you miss your brother. I wish I could tell you it gets easier, but I can't. The loss of a sibling is always very painful, no matter the form. I wish you well and hope you continue to cope and continue to educate those in need. I have a blog, it's the one I started after my brother took his own life, it's to help those in need. Many times people with mental illness cannot hold a job. My blog enables them to find "REAL WORK AT HOME NO FEE JOBS" I scan them and check them out myself. Often times, with these types of jobs they can take as much leave, without notice as they wish. I'd like to share this with you and your readers. In addition, if you don't mind I'd like to exchange blogroll/links with you if you are interested.

    Be well,