Tuesday, October 18, 2011

My Brother's Name is Joel.

My blog typically serves as an amusing stage for my extended family's hilarity. People click on Tru Stories from the 222nd Floor for a giggle or a cute picture. I often credit myself as living life filterless and keeping it 'realz'. A trait, I am actually surprisingly proud of.
In the past two years, I have sparingly mentioned my brother's illness. I have politely referred to his troubles as 'being ill' or 'not exactly the boy I remembered'. I am not ashamed of my brother or embarrassed by his disability. I have simply avoided details, in an effort to keep my 'public' from feeling uncomfortable. There are words/topics our society shrugs away from.
Yesterday, it finally occurred to me, my brother deserves a voice on my blog. As an outlet to hundreds of people all over the world, my continuing silence on this subject encourages the prejudice of the uninformed. If Coach's sister, had been diagnosed with cancer, I would have opened the blog floodgates. Pleading for your prayers. I would have posted her picture and bragged of her beautiful traits. By not treating my brother's illness with the same dignity, was a mistake. I owe him my apologies.
My little brother is four years younger than me. He was the bright light of our family. My brother's name is Joel. He has Schizophrenia. This, is his Tru Story.

Joel was diagnosed at 18. After two years of erratic behavior, which lead to experimenting with drugs or alcohol. (The eventually progression for nearly every schizophrenic.) Family or friends, immediately felt more comfortable blaming the drugs for Joel's behavior. I always understood the drugs were the result and not the cause. Joel had eccentricities as a child, which are now easily explained. He was nervous at slumber parties. He always kept his window tightly locked. He would color coordinate his drawers. We accepted these quirks as the traits of an extraordinarily brilliant child. Testing far above other children his age. Since his diagnosis, there has been times of extreme sadness. Times of bored daily survival, with a few precious moments of joy.
The brain is a complicated muscle, sending electric impulses to register thoughts, discomfort, physical need and emotion. A perfectly normal brain, often juggles their impulses fairly accurately but can confuse themselves with alcohol, sleep deprivation, even a passionate love affair. The schizophrenic brain has the same electric impulses extremely magnified and without the ability to properly compartmentalize.
For Example:

Woman A (with a normal brain) walks into a crowed bar, alone. At that very moment, Table Q (with several strangers Woman A has never met) turn in her direction, anticipating the arrival of a friend. Without having noticed Woman A, Table Q returns to their conversation, making a quick joke about the lateness of their missing companion. Table Q laughs hysterically. Woman A, believes they noticed her and made a joke at her expense. She stands frozen, registering the moment in her mind. While she is standing, two patrons from Table Q again look in her direction. One whispers to the other, they are STARVING and irritated with their late guest. The other responds by rubbing his belly and laughing. Woman A, witnessed this exchange, convinced they were making fun of her bloated belly in the dress she wore. Woman A feels embarrassed. Her face is red and she in devastated, believing Table Q is discussing how awful she looks (she already felt unsure wearing the dress!) She turns from the bar, rushes out humiliated. Returns to her warm apartment. Throws in jammies. Stays up late, feeling depressed and eating ice cream.
Table Q... never the wiser.

A similar moment has occurred for EVERY woman EVERY where. In Jr high, a girls bathroom...etc. Eventually, Woman A would calm. Realize Table Q probably was NOT talking about her. Woman A would feel silly and forget how ridiculous she behaved.
My brother, suffers moments like this, every time he walks into a public function. He is convinced the world, thinks he is weird. He is afraid people are talking about him. He becomes paranoid, ashamed, embarrassed. He may attempt to defend himself. He has likely created the scenario in his mind... though his disease prevents rational deduction from helping him realize the idea is ridiculous. He craves the safety of his home or the comfort of small groups, he can trust.

In the past 2 months, my brother has been weaning off an old medication and desperately searching for another. The result has left him seriously manic, sleep deprived and with painfully clear depressive thoughts of his life. Joel has been hospitalized, lost weight, attended countless appointments and taken hundreds, if not thousands of pills. My mother has written several uncomfortable posts on her blog. Unfortunately, each has become more of an irrational journal entry, too personal for many to deal with. Her ugly honesty, has unintentionally solicited uninformed advice.
I have heard people rationalize... "At least Joel is not a 7 year old, suffering from cancer." True. I pray to never know the pain of losing a child to an accident or cancer. Though, I honestly pray even harder my 3 beautiful children shall never inherit my brother's fate. My parent's only son, essentially died at the age of 17. (I understand this declaration will offend many, yet I stand by this statement.) Who Joel was, who he could have become, his memories, his interests, his abilities... died 13 years ago. Today, remains the adult shell of the person Joel could have been.

My parents are struggling with the impossible decision of long-term care. Professionals and friends have matter-of-factly, told them 'it is time.' I share the sentiment, this situation is not ideal or healthy for my parents and Joel. They are living in a highly-stressful environment. Still, my question is this:
If Joel had suffered a terrible car accident at 17, was severely paralyzed, yet retained his mind: would people callously expect my parents to cart him away?
From my more personal angle, Joel is my only sibling and an Uncle to my three children.

Joel is extremely uncomfortable attending formal events, in new locations. Yet, when The Kid received his First Communion, Joel was his only God-parent in attendance. Joel wore a new outfit, to a service not of his denomination, walking directly behind his God-son, to the front church.

Joel is nervous in situations with lights and loud noises. This winter, he attended every one of The Kid's basketball games. And several home baseball games.

(Uncle and Coco.)

After spending durations in Bromenn, Joel is terrified to be near hospitals. Yet, he faced his fear to visit The Kid, within hours of his birth. Joel will never have a daughter of his own. Though he will happily, draw a driveway full of princess castles (for his bossy Tink), play Barbies with his Coco and patiently read countless books, to his innocently adoring nieces.

It may shock the public to realize, there are not cute little Group Homes, on the corner of every small town. Honestly, mental illness has made very small strides from the days of the Cuckoo Nest. The nearest location to place Joel, is one hour and thirty minutes away. It is unlikely children under the age of ten, would be able to frequently visit such a location. If or when my brother is placed, will essentially end the relationship between Uncle and my children.
Joel will be alone. In a strange town. Without his parents, his sister or the only children, he will ever form a relationship with. Our family holidays will be reduced to uncomfortable 'Day Before' visits or brief lunches. On Christmas, we will celebrate without Joel... pretending to not feel his heart-breaking absence. The unbearable guilt will hang over our family. His phone calls, begging to be allowed back home, will rip at my parents soul, crippling their marriage. No more basketball games. No chalk castles.
I hate to appear so crass: but none of this makes me feel lucky, Joel is not dying from cancer. This illness is very much a cancer on my family.

If this post, has angrily struck a cord... I am glad. I want to shake your beliefs on schizophrenia. I want to start a candid discussion. Suggest this blog post to a friend. Or take another understanding look at the 'weird guy' in your community. My brother does not need your pity... he is sad enough for himself. My brother does not want you to feel uncomfortable in his presence... he is uncomfortable enough within his own mind. My family does not benefit from your whispers... my brother continually and bravely battles the whispers, haunting his thoughts.
My little brother's name is Joel.
He is Schizophrenic.
And I still, really love him.


Sweetbreads Bailey said...

Thanks for keeping it realz, Tru Stories. Joel's story hurts my heart. I hope he can somehow get comfort and I hope you and your parents get new, happy memories of your brother & son that you've missed so much.

The Mrs. said...

It breaks my heart that your family - or any family - has to go through this trial. It makes me angry that there is no cure or at least an answer to alleviate some of the suffering. I applaud you for sticking up for your brother, for using your voice to speak for him and the thousands like him who struggle with this awful disease. You are a good sister, Tru Stories.

Unknown said...

My Tru Stories your eloquent writing breaks my heart all over again. We will find our happy place again. We bounce back and survive. That is who we are. Love, Your Mom

Kris said...

Love you all, and please tell me if there is anything I can do. I would love to have Joel over for dinner & to hang out w the kids. I feel for him & all of you! I know a small part of what he is feeling w anxiety. I haven't seen him forever & I miss him. Please call me anytime!

Anonymous said...

Thank you for posting this. It was brave, kind, and honest. It has also given me a new perspective as I also know someone who "died" due to mental illness. Thank you, I needed this.

Anonymous said...

You are a good sister. I am sure this was one of your hardest blogs. you did a good job by telling the world the inside story. Many judge others when they are different. All have stories we do not know about. This may open the eyes of those who judge. We enjoy it when Joel makes family get togethers. We miss him when he is not there. I know you have some hard decisions to make. Whatever you decide, will be for the best. God does not give us more than we can handle. It doesn't seem that way at times, but your decision will be the right one no matter what others might say, You all have had my prayers and will continue to do so. Wish I could do more. Love to all of you. Gramma G

MelancholySmile said...

Beautiful post. Having dealt with mental illness, I know how misunderstood it is and how difficult to navigate when there are no easy answers. I pray for you and your family and hope you continue to keep it real. Your words do so much to shed light on the subject. Honesty is power.

Anonymous said...

I have no great words of wisdom....or any advice to give......I can only wish Joel and your family strength to get through these tough times.

"During your times of trial and suffering. When you saw only one set of footprints,
it was then that I carried you."

Its time for you and your family to be carried....


kori said...

thoughts & prayers for joel & his family. ♥

Tru Stories said...

I could never express, how grateful I am, to the people who have commented on this post. This was easily the most personal topic I have ever discussed and I appreciate the people who were touched by our family's struggle.
Thank-you so much.

Anonymous said...

Thank you for this article. I'm not schizophrenic however I do suffer from bipolar disorder. I can relate to some of the issues that Joel deals with. Seven years ago when I was told that I was bipolar like my father, grandmother and my sister...I decided not to hide it. The stigma of mental illness needs to be wiped away and replaced with understanding that it is no different that someone with cancer or diabetes. In some cases it maybe worse...in some cases our illness won't let us take the proper courses of action to help ourselves.
I wanted to tell you that I share your saddness for Joel that his medications have ceased to help him. I am watching the same thing happen with my father and I live in fear that this is my own future also.
I pray for him and your family that you will one day be able to have him in your lives again.

Cath said...

Before I went on maternity leave I was keeping up in blog world and have got behind lately. I was reading your Mom's posts and they were breaking my heart. Not knowing her personally I didn't know what to say, but wanted to say something. It's hard to just hear about what your brother & your family are experiencing. It's not fair that things like this happen to good people, but I agree with Gramma - God will not give you anything you can't handle, even if it's hard to understand why. Stay strong & thank you for explaining something so difficult in a heartfelt & knowledgable way. Your family, especially Joel, are in my prayers for the answers you are looking for to come to you soon.