Wednesday, March 25, 2015

Mental Illness Has a Name

Mental Illness Has a Name
And His Name Is Not Ben
An Ode to My Son

For the past four years an unnamable disease has resided in my home.  It has slowly permeated every inch of our home, of our life.  This unnamable disease has wreaked havoc with my family structure.  It has brought needless shame and unending worry.   It comes and goes, hiding its ugly head…only to pop up again, when I think that healing is occurring.  He is the source of sleepless nights and endless worry.  This disease, unnamed by many, has a name.  His name is Mental Illness.

During my son’s senior year in college, I got a call from the college dean, as Ben was ending his first semester.  The call informed me that my son needed to take some time off of school to seek medical help.  In Ben’s first three years of college he maintained a 3.9 grade point average, won distinctive awards and had been sought by colleges for post graduate work.  Ben’s essence in life up to that point, was that of a young man who was fun-loving, gregarious, spiritual and strong.   His return home brought a young man that was markedly depressed, afraid, unsure and without hope. 

Concerned, devastated and unaware, we plowed through a mental health system, seeking answers, being blind-sided by a system that cannot meet the needs of a burgeoning population with great need.   We wanted to know, but didn’t know how to know.  We wanted to know and were scared beyond belief to know.  We were speaking a foreign language and walking unfamiliar terrain without a guide to help us along the way.  We often were left for wanting at a time when answers were of prime importance and time was of the essence.

This disease wanted to be unnamable and at the same time it aimed to rename Ben.  In the course of three years there were multiple hospital stays, a suicide attempt, multiple diagnoses with yet another change of diagnosis, changes in meds, changes in therapists, arrests, and revocation of a driver’s license.  Sometimes Ben disappeared so deeply into his disease that I could not see the young man that I had loved from infancy through his adulthood.  But I knew he was there.

Our family is of the fortunate.  Friends surrounded us in moments of greatest need.  And I became a tigress.  I became familiar with a local mental health organization and sought answers.  I discovered that our story was a common story in a community that is often unheard.  I advocated.  I demanded.  I sought to understand and stood my ground in wanting to be understood. I refused to have a disease take residence, replacing a son that I loved.   I chose at times to be responsible for a young man, incapacitated by a disease; only to release responsibility back when he began to manage the disease.

Slowly, a system that was foreign became familiar.  A therapist was found that advocates for Ben in every way.  Meds stabilized.  Behavior choices more deeply stabilized.  We have had up’s and down’s on our journey.  Through hell, back to an even keel, only to face another challenge, Ben has shown resilience, bravery and has been an inspiration to many in every way.

I don’t know where the future will go.  For now, Ben is in a stable place.  He is looking to go back to school in the fall and is building toward a manhood for which he has much to be proud.  We are in the middle of a journey and do not yet know the destination.  One thing that I do know—mental illness does not define a soul.   Mental illness has a name.  Mental illness doesn’t name.

You are Ben. 
You are not mentally ill.  
You have a mental illness.
Your disease does not name you.
     
You are Ben—
a son
a brother
a friend.

You are Ben—
kind-hearted
sensitive
funny
fun-loving
worthy
courageous.

You are Ben—
a musician
a writer
a philosopher
a lover of life
an artist.

You are Ben.
You are not mentally ill.
You have a mental illness—
A sickness that does not define your soul.




Thank you to Two Writing Teachers for dedicating space and time for teachers and teachers of literacy to come together to share ideas, practice and life experience.



30 comments:

  1. Well, you know that I have fought a similar kind of system because of another named mental illness, dementia, and I know some of what you've faced, but to face it with a child at the cusp of moving into wonderful adulthood must be an additional challenge. I am proud that you are a tigress & think that it's often the way to be. I know that I was fortunate too & am saddened by those who are so daunted by even the medical words, the forms, the endless conferring that they cannot make it. Best wishes, Deborah, and terrific news that Ben is making good plans.

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    1. Thank you, Linda. I have appreciated all of they ways we have connected in the past three years. You were my support at TWT when I was a newbie and have been grateful as we have seen the commonalities we share.

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  2. As an advocate for you son, your courageous slice, gives hope to others facing internal issues that turn ordinary days into struggles. Resiliency, grit, and love are signs shown in your prose and poetry. I can empathize with your struggles because I am fighting the system to get my adult son the help he needs to live a full and inspiring life in society. Cerebral palsy is the name of the issue in my son's life. Although it is mild, it has become a symbol of disabled young adults who live on the outskirts of society. Isolation, fear, and turmoil are the outcomes of being alone in a world that needs to be accepting. Kudos to you!

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    1. Thanks, Carol--and good luck in your tigress pursuit of support for your son!

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  3. Ben sounds like an amazing young man. Thankfully he has an amazing mom. Thank you for your bravery and for sharing your story. I too know about forces that try to take our kids from themselves. Ben is brave because his mom is brave.

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  4. Thank you for writing about this. My family, too, went through similarly confusing and frustrating years when my daughter's illness first reared its head. Unfortunately, for me, it never feels like it's "over." I know it's always dozing...under the surface...ready to awaken again.

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    1. Yes...dozing...under the surface...I totally get it. Than you, Melanie.

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  5. Thank you for writing, speaking out on such an important topic. I think more people than not have experience of some kind with mental illness; it bothers me that in this day and age, it is not talked about as freely as cancer or diabetes or any other kind of medical condition. Your son is fortunate to have you in his corner, to know that his essence is still Ben, only Ben.

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    1. Thank you for your kind words. This writing has been sitting in me for awhile.

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  6. Thank you for this post today. You wrote a beautiful explanation and a very personal poem that could apply to so many people and situations. It is so important to keep in mind the person.

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    1. Thank you. I appreciate your supportive words. The person is always central.

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  7. Dear Deb, This struggle against the darkness touches all of us in some way, and reading about others' experiences makes the journey less lonely . Thank you for being the tigress, both for your family and for those of us who read your words and know you. Ben has always been a strong light. xo, a.

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    1. And, you, my friend, are a strong light for me. Thank you for all of the ways you support.

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  8. Deb, thank for sharing this slice of you and your son, Ben. Our mental health system seems to still be living in the dark ages. Your son is so fortunate to have you as his advocate. I pray that Ben will continue to improve and that you will continue to fight, not only for him, but for all the others who slip through the cracks. Ben and others are individuals - not a disease.

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    1. Your assessment of the system is so accurate. Without an advocate or means, many slip through the cracks. Thank you for your kind words.

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  9. What a heart break this piece was to write and share, but yet your words reach out and give hope and understanding to many. Thank you for giving voice to this topic.

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    1. Actually, writing this piece was a relief. I do hope "my story" offers hope to others who have a similar story.

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  10. Your post brought tears to my eyes and emotion to my soul. You so honestly share your journey while defiantly claiming your position and your positivity. He is lucky to have you and you are lucky to have him. All the best on your continued journey. Thank you for putting it into words for us to read.

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  11. Thank you for sharing your family's journey of understanding and hope. An important reminder to all that, "Mental illness has a name. Mental illness doesn’t name." Too often people speak of labels rather than the person, creating a chasm that prevents us from showing what is needed most - understanding and compassion. Be proud of the tigress in you; your son and the world are better for it. All the best in your healing.

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    1. creating a chasm that prevents us from showing what is needed most--understanding and compassion. Wise words. Thank you.

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  12. I am so proud to be your friend and so grateful to you for having the courage to post this. It is a gift, not only to Ben, but to all of us whose lives have been forever changed by mental illness. How fortunate Ben is to be surrounded by people who see him and not only his illness. How blessed he is to have you for a mom, Deb. xo

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    1. Thanks, Angela. Are we still on for next week?

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  13. Thanks you for sharing your journey. I pray he will continue to heal.

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  14. Your piece was an inspiration to me as I deal with my son. Sometimes the answers so out of our grasp. You have certainly found the way to see the situation that best helps your son. Thank you.

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  15. I could echo what everyone is saying. Something similar happened to a friend of mine, with her daughter...excellent student, musically talented...and so much like your son...getting the call when she was doing so well in college...and coming home only to face the same things as your son. I like that you were the tigress...because Ben needed that...he was unable to function to be his own advocate. It is sad that the mental health system is so disjointed...so difficult...like jello....nothing really solid...and only a strong advocate can go through the maze to some final positive result. Yes, Ben has a mental illness....just like someone might have asthma....Ben is not mentally ill...just like someone is not asthma. Thank you so much for your words. They ring true for many and need to be heard.

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    1. like jello-nothing really solid--love that image. I get the analogy of asthma. I often use it for cancer. If you know that someone has cancer, you reach out and support. Often families that deal with mental illness become more isolated due to a lack of understanding about this disease.

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  16. Deb, I feel so much as I read your writing and I am so very grateful for your open, honest, very vulnerable sharing. This topic is not easy to talk about... and, as you can see from the comments, it needs to be talked about! Many families are touched. Many families flounder. Many people misunderstand. I honor you for the mother's love that has kept you going, the advocate's wisdom that has continually sought answers and choices. I love the way you honor Ben and hold the truth of him in your heart always. I almost didn't comment because I am not sure my words can do justice for what this writing brings up for me. Thank you from the bottom of my heart for your sharing.

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    1. You are welcome! And thank you for all of the ways you inspire me.

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