It’s In My Genes, I Guess
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No, I’m not talking about having multiple sclerosis passed genetically. Although we know that some people are more genetically predisposed to contracting MS than other people. There is a different type of gene connection in my lineage – my mother’s sister Zelpha (we called her Aunt Zep) also had multiple sclerosis.

It was a different time

She was diagnosed in her twenties, at a time when she was told to not talk about having MS because her doctor was sure she would be fired from her job. Keep in mind that she was born in 1916, over 100 years ago and it was a different time for people with chronic illness, and especially for women.

She eventually went to work at a local federal government installation, which coincidentally was the same place my father worked. He told stories that people often thought Aunt Zep was a bit tipsy from a drink or two over lunch, because of the way she would often stagger down the hallways. Walking a straight line was a skill she lost when she was young. My straight-line walking resembles her swagger and stagger more and more.

She could no longer keep it a secret

Aunt Zep stayed quiet for a few decades about her MS until she could no longer keep it a secret and then something changed – she became an advocate for MS. She got involved with the local NMSS chapter and she spent a lot of time helping other people who were newly diagnosed.

This was at a time when there were no disease modifying therapies and everyone with the diagnosis was left facing a pretty certain future in a wheelchair. She was no exception, but that didn’t stop her. I often think of Aunt Zep and her path with MS – which eventually did leave her in a wheelchair and dependent on so many to help her with daily activities. But she never surrendered and she always had time for others and sharing her advice on living with MS and life in general.

Invited to the White House

Aunt Zep has been gone for over 20 years but her memory stays close with me and recently the mailman brought me a lovely reminder. My cousin Jaynie was sorting through her mother’s papers and found a newspaper clipping from Aunt Zep’s MS activist days. The story is brief and I wish I had more of the details but the bottom line was she was invited to the White House to attend a meeting for handicapped people- yes that is what they called it back then. The conference was on The President’s Committee on the Employment of the Handicapped, and featured talks by Lyndon Johnson, US President from 1963-1969, and CBS commentator Eric Sevareid. I can only imagine that her excitement at getting to attend this conference wasn’t much different than what I feel each time I am in DC for my own form of MS advocacy work.

She paved the way

It was a different time for my aunt than it is for me and my life with MS is better because she and so many others paved the way by being outspoken advocates. Even though she is no longer with us, I would like to think a part of her compassion and knowledge about MS was passed on to me and that is part of what keeps me pushing to help and find answers for us all.

Wishing you well,

Laura

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3 comments on “It’s In My Genes, I Guess

  1. TracyShudo says:

    Thanks so much for sharing your story Laura. OMG your aunt was so brave and thank god for people like her who can before us and helped build a path. Well no one in my family history had any neurological conditions. So 23 years ago when I was being diagnosed they thought I had an inner ear infection, as I all of a sudden had really bad vertigo. Then as days passed I was seeing family Dr every week. They asked are you having any numb patches anywhere on your body? I say NO. Go with my husband in the car and tell him what they asked me and his response was yes you have those all the time. No I don’t I replied. Well 2 days later sitting on sofa, my right arm went numb. I was not leaning on it or anything. So yes my husband was right and I was wrong. So next weekly visit to Dr office I tell them what happened. Well I did not even know why they had asked that question. They said Tracy you have to go right now to the main hospital in our city because you have to see a different kind of DR. Still not knowing what this was about. We went to hospital they were expecting us so I was put in a room right away and a nice intern came into the room and told my husband and myself due to my age and symptom’s he said I most likely had one of three things, the inner ear infection, a brain tumor or a condition called multiple sclerosis. Well after that Dr left the room I looked at my husband and our son who was just about to turn 3 and said ok it just cant be one of those the other two we will learn to live with. I did not want to have a brain tumour. And no it was not it was MS. That was 1995 and they did not have the treatments that they have today. I live my life in a positive way and when I share with people what my condition is because it is no longer invisible. The first thing people say is oh I am sorry you have that. My response is don’t be sorry I am alive, because if it would have been a brain tumor I most likely would not be. Well that was way more than just what our nerlocical Genes are. Thanks for reading if you do. Tracy

  2. potter says:

    I had two aunts that had MS before there was any treatment, we also have ALS in the family that we traced back to my great great aunt. I am the third person to get MS and 14 immediate family members have died from ALS. My sister died from it a month ago, my mother died from it 20 years ago. When I was diagnosed my neuro knew about my family history, he said good news you don’t have ALS, bad news you have MS. He told me that ALS and MS were like sister diseases. It is wonderful that your aunt became a great crusader for MSer’s. Potter

  3. RobinSwenson says:

    Thank you Aunt Zep! And thanks for sharing your story, Laura.

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