Author Topic: Family Secrets  (Read 1087 times)


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Family Secrets
« on: July 05, 2019, 10:28:03 AM »
I just found out through an MRI in the hospital the beginning of June, that I have partial agenesis of the corpus collasum.

The corpus callosum is a bunch of nerves that connect the right and left hemispheres in the brain.  It contains the most nerves in the brain.

National Organization for the Disorder of the Corpus Collasum:

I didn’t know. Nobody knew except ….

When my dad passed away my accountant and I were going through dad’s private black case and found a test that was run on me when I was 15 months old.  The results were normal when they ran it during sleep.  But it is the same test they ran back then for ACC. I suspect that they were told and knew about it. I will never know for sure 100%.  I am going to ask my financial advisor this fall.  He will not lie to me.

This is a congenital birth defect that happens every 1 out of 3,000 or 4,000 births.  It ranges in severity from mental retardation, blindness, deafness, mute, no sitting up or walking (those that have to live in an assisted living) to those who are of moderate intelligence that live a full life.  Vision loss is a huge aspect of it.

Nowadays, it is diagnosed during pregnancy through ultrasound.  And after birth through MRI. 

Cause unknown.  However, they believe the following play a role, genetics, chromosol abnormalities, virus, infections, something like rubella, a developmental delay and the biggest cause they believe is fetal alcohol syndrome. 

I can handle the diagnosis.  It explains all of my unanswered questions from childhood.  My low vision, why mom always said to me when I complained about the kids in school you could have been in an institution.  My anxiety and depression.

I actually am relieved.  Read the book Silver Butterfly written by a fellow ACCer.  When I was done, I said, this is me!

What I am having difficulty handling is the fact they did not tell me.  My therapist and I have discussed it and he wanted to know a why.  I told him that mom lived her life in denial and dad wouldn’t have wanted it known in the public.  He said it was the family secret and that by telling it, it would reflect back on the family.

He also said they may have not wanted to tell me because by doing so, it would have held me back in school.  I told him by putting me in school, the students and teachers made me so angry and if it was going to be the last thing I did, I would prove them wrong.  And, I did, by earning an MA

But, my girlfriend said, they never sought help for you.  Today, they have early intervention which includes, OT, PT, speech therapy, behavioral and coping skills.  And, they tell you to go to a neuropsychologist, an endocrinologist etc. and special education.

I don’t know what they had back then, but certainly they had something

I am angry and sad.  And, I’m not sure how to handle it.

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Re: Family Secrets
« Reply #1 on: July 05, 2019, 03:21:11 PM »
Dearest Lighthouse:

Such a horrible shock!  You are stunned and hurt and angry and grieving for all those years of secrets and your own ignorance of what was happening.

The grief must be overwhelming.  I think your parents were in denial, and thought that shielding you from this diagnosis would give you a 'more normal life'. 

And they simply could not face the effort they would need to make to deal openly with you about ACC.  I'm sure they feared discrimination from teachers, students, and doctors. 

But you became such a wonderful, strong, woman in spite of everything.

You will experience waves of grief and anger, and realizations of how you may have been affected will flood into your memory.

Reaching out to others with ACC is the very best medicine for you, and then talking with your therapist, of course.   

Thank you for sharing this with us.  We have gained so much from you over the years, and we are here for you.

Hugs, Elaine

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Joe S.

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Re: Family Secrets
« Reply #2 on: July 05, 2019, 07:47:36 PM »
I am sorry to hear that you have additional problems. (((HUGS))) Please find a support group for this. Others will help you, and you can help others. Learning what we can do to manage out health challenges is healing.
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Re: Family Secrets
« Reply #3 on: July 07, 2019, 12:27:47 AM »
I am so sorry you had to learn about this and add to your things to think about and deal with. It is like Caroline says though. You beat the odds cause you are smart and educated and independent and have accomplished much.

I had an uncle on my mothers side who died from a seizure. Mom told me when I was in nurses training. She was ashamed and so were her brothers and mother. We live in a different world now. We discuss things and talk about them...sometimes too much that is true. Back in those days the people were trained to keep all things hidden in order to be safe and proud.

If my memory serves me right there would not have been much help through counseling private or in the schools. This condition was way ahead of its time, so to speak. There were very few kids that got counseling for learning problems, physical ailments or behaviors back in those days. In fact, parents didn't want anyone to know if their kid had a problem and was a little "different" than the other kids. In reality when I think back to my school years I think that there were a lot of kids with problems and sometimes I was included in that group. We just had to tough it out. It does build character the hard way.

My only uneducated advice I can bestoy is to put this issue on a shelf in your closet. Address it only when you have issues that need tending to or need medical attention.. Share only with those you respect and know will keep quiet to maintain your privacy.Treat this the way you are comfortable but don't feel like you need to share with the world.

Treat yourself to a little vacation over a weekend to celebrate the fact that you are really "whole" and making it in this world. Celebrate the woman you have become. Allow a certain length of time to grieve over this and then it goes on the shelf and you can go on with your life. You have accomplished more than many people who have no health issues.I am not trying diminish this but want you to know that this is one of those things that is basically over and done with. You didn't know and you can't second guess your parents actions. All parents screw up at times... I know my hubby and I did more than we want to admit.

Just know that giving this a lot of "power" could rob you of the years you have left. Enjoy the years you have left cause you had a lot of stress with your parents illness and it is time for you to celebrate some. Hugs, Irish