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 6^th 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 94^th 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.