Celebrating 35 Years

Meet Ina – An Attorney with NF

Both Sides of NF

My name is Ina. I am 65 and was born with NF. Because my case is “mild” it was totally missed until I was almost 50.  My physical problems are minimal just freckles “cals” I had since birth and bumps that began during my pregnancy before I was diagnosed.

More problematic are my learning disabilities or differences. In early elementary school I struggled to learn to read. I had serious organizational issues and my handwriting was terrible. Computation was difficult and my numbers would not line up when I tried to do long division or add many columns of numbers.

Anything involving “art” like drawing maps, sewing, or making model animals defeated me. I was laughed at by teachers and fellow students.

In 6th grade things improved a little and I was reading high school books. In high school I did even better and was actually in the National Honor Society. This was only because gym, typing, and art while required did not count in the GPA.

I was accepted to a good university and then went to law school. I had a career that included being a supervisor and doing training programs. One of the reasons I went to law school was because while I was in some college honors classes I was failing my foreign language and eventually was tested and had the requirement waived due to “mental disability” Until my diagnosis years later this was the first time I heard of the possibility of a learning issue. The waiver of my language requirement was the closest I ever came to having an IEP.

The Chicago area is the headquarters for a wonderful advocacy group, NF Midwest. The director Diana Haberkamp is an amazing tireless woman who works to educate people with NF, inspire parents of children with NF and fight for funding, She has told me my story of going from almost failing first grade to a 30 year career as a lawyer is “inspiring”.

To be honest from near failure in first grade through college and law school even when I did well I always struggled. It took me longer to do my work and I sometimes felt like I was getting through by sheer luck. Even when I had the best test or paper in the class I felt ‘something was wrong”.  If I knew what I did to change from doing poorly to sometimes being the class star I would pursue a second career in education.

As I said I am not sure how I changed from the student who was laughed at to the student who loved learning and loved my career. I do know that what is important is for each person to try to find their talent and to see the word talent broadly. In my career as a supervisor in the Cook County Public Defender’s Office I was known for settling disputes among colleagues and being the go to person to calm done angry or difficult clients. I did training programs for classes of 50 or more and in retirement give speeches to large audiences.  In my “golden” years I can finally admit I have talents and I hope this encourages others.

The other side of my story is that as a child I was always anxious and unhappy. This was long before much was known about special educations and long before there was advocacy for IEPs.

Recently my mom died 6 days before her 94th birthday after a two year journey of my fighting for hospice care and watching a mental and physical decline. When my daughter and I cleaned out her small apartment in the retirement home where she had lived for 15 years I found she had kept my old report cards. Seeing the bad grades I had in spelling, hand writing and “arithmetic” combined with some good grades in composition and oral expression brought back sad memories I thought I had put behind me. I remembered how I always felt frustrated and even depressed as I felt like I did not fit in with either the good students others who struggled.

I hope some good will come from this experience and that my story demonstrates the need for research on learning disabilities generally and NF caused issues specifically.

I joke about being a child of the 60s now in my 60s. So as a favorite 60s song said “I Looked at Life from both sides.” NF caused me pain as a child and I still get frustrated at not being able to type well, make documents for groups where I do volunteer work, hem my own pants and  especially by my poor organizational skills. My inability to learn a foreign language limits my interaction with some low income workers for whom I do advocacy work.

The other side is that my legal career representing disadvantaged communities brought me a sense of satisfaction and my clients inspired me. Several told me I changed their lives for the better.

So I hope anyone reading this will see both sides of NF. I hope they will feel hopeful that they or their children can find their talents and passions. I also hope all of those affected by NF or who love someone is will recommit to fighting for funding for research for a cure and support for NF patients and their families.

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Comments (6)

  • My 41 year old son has NF1 and was diagnosed at age 4. Your story in some respects reflects what he experienced as a child. He was very capable academically, but the physical issues placed him on the periphery of the school experience and still affects him today in most aspects of his life.

    I am happy to hear of your successful career and how you have helped others with your gifts.

  • Hi I have had NF1 since birth I have 6 children 4 of them have NF1 my oldest the worst of all. I can go right back to my Grandfather and I was told his mother had it as did my mum. I did not do well at School and we are waiting to see if my Son has Aspergers he is 10 1/2 as there is a link. As an adult I am now having health issues with chronic pain. Sadly I live in NewZealand were we don’t have a lot of doctors who deal with NF if I had the money I would bring my family overseas to speak to an NF Specialist. I am told there is not one in NZ. except for oncology we have that of course but they don’t do much except say you have NF there’s not a lot we can do I will say my oldest daughter has had a number of operations on her arm and hand which has a large deforming hand.

  • This is a beautiful, honest and inspiring article. It makes me mindful that everyone we meet faces challenges we may not see, that we too easily categorize people (especially kids) who are differently abed. Ina you are an inspiration and a model of grace!

  • Hello Ina!
    Thank-you for sharing your story. My youngest son, 25, has NF1, diagnosed at age 5, He is a new mutation.

    All of what you described about your elementary school experiences were echoed by him. He had a 504 (iep) which helped so much. Still some teachers refused to follow the guidelines in the documents.

    Suggestions to parents.
    BREATH! Continue with positive comments, others who get frustrated with your child, don’t pay them any attention. Your child is different, so you can’t parent the same. Never allow teasing, however, tell your child, teasing children will tease anybody for anything….. but…have a since of humor too. ( I lovingly would call my son, my Dalmation baby…. that kind of humor worked for us) anyways…..He now has his college degree in political science, and is attending paralegal classes….because he wants to be a lawer, however he wants to make such he will like the work before (lots) money is spent on Law School!!!! Go figure, the child that his 3rd grade teacher told me that not all children will be doctors or lawyers!!!!!
    Enjoy everyday! Lots of love and hugs to all you NFers!
    ps- Electrodesicction does work. Fight for your child and or yourself have it done while the fibromas are small if possible. xoxo

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