An Interview With Writer Edith Forbes: Living With MS

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by Jamie Hughes |

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Last year, I got the chance to read and review Edith Forbes’ medical memoir, “Tracking a Shadow.” I thought it was an encouraging and thoughtful work, so I contacted her by email for an interview to share her thoughts with readers of this column. Forbes graduated from Stanford University and has written four novels as well as essays, poetry, screenplays, and even a cookbook.

Excerpts follow:

JH: You first experienced multiple sclerosis (MS) symptoms when you were 38 years old. Tell me about those first months. Were they difficult for you?

EF: After that first episode, the possibility of MS didn’t feel real. I was busy on my farm and on cloud nine about my first novel being published. Also, there were no treatments back then, so there was no reason to talk about worst cases.

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Eighteen months later, however, the symptoms came back. That time, MS was certain, but there still were no treatments. When this flare-up ended, my only residual symptom was a patch of numbness in one hand, but I knew that might be just the beginning.

My coping mechanism was to go to the medical library and dig for information. For me, information is self-care. Besides wanting to understand the disease, I was searching for any strategy that might improve the outcome.

The subtitle of your book is “My Lived Experiment with MS.” Can you tell me a little bit about how you “experimented” on yourself?

When I was reading about the disease back in 1995, a lot of the information was epidemiology: Where is MS common? Where is it rare? Agriculture has always been part of my life, and when I looked at the map of high MS incidence, it looked to me like a map of milk production.

In a bit of serendipity, my brother-in-law was a research physician studying immunological approaches to cancer. When I mentioned the pattern I’d noticed, he did a search of medical journals and discovered that French scientists had just published a study describing a correlation between milk consumption and MS. [Interviewer’s note: Other studies have been done as well if you are interested in further research.]

The resulting experiment was simple: I would stop consuming any milk products and see what happened. I didn’t change anything else. On the farm, we raised our own vegetables, fruit, and meat, and I continued to eat much of it. Just nothing made from milk.

My experiment has been running for 27 years, and the result is “so far, so good.” I had one mild flare-up back in 2004, which left me with a bit more numbness in my hands, but no other symptoms. I know this outcome could be pure chance. That’s why I hope someday there will be more systematic study of the possible link between milk and MS.

How has multiple sclerosis become a part of you? In what ways does it affect you, both for the better and for the worse?

For my first two decades with MS, I thought about it as little as possible. Apart from my food habits, my life was not affected by it, and the few people I knew personally with MS were all doing OK.

At some point, I started meeting people who were not “doing OK” with it. They talked about fatigue being a problem. At my niece’s wedding dinner, one gentleman arrived at our table on a scooter and explained that he had MS. In the resulting conversation, we learned that everyone at the table had a close connection to MS. These encounters made me think more about my experiment.

My mother passed away around this time, and soon I found she had taken up residence in my head, urging me to do something useful with my experience. So I decided to write a book, and instead of never thinking about MS, I was thinking about it all the time. I thought once the book was written, I could stop thinking about it, but then the book was published and all sorts of people started reaching out to me.

It is now a constant presence. And that is a good thing because I’m making interesting connections to other people.

You’ve lived with MS for several decades now. What would you like to tell people who are newly diagnosed?

I would say get the best information you can. Then take time to think about your own life and decide on your plan of action. Whether that includes shots or infusions, a diet that requires not eating some things you like, an exercise regimen that takes effort, or all three of those things, go all in and embrace the measures you have chosen — not as burdens, but as allies helping you maintain good health.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Steve avatar

Steve

I am glad you are doing well. I was also diagnosed in 1995. By that year there were three approved drugs, Avonex, Betaseron and Copaxone. Did you decide not to start a therapy after discussing it with your neuro or just to adopt a wait and see approach?

Reply
Jamie Hughes avatar

Jamie Hughes

I am currently taking Copaxone and have been almost since my diagnosis. However, I am considering speaking to my neurologist about taking a break from it. I've had several of the known adverse reactions, and they take a lot out of me. My condition has been very stable, so I'm wondering if I could try life without injections.

Edith Forbes, the woman I interviewed for this column, has never taken any medication. She has no plans to either.

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doreen lubin avatar

doreen lubin

have ms since 1988 diagnoised 2014 started meds 2018 after bad relapse... thinking about stoping the meds soon.never wanted to take them at all. until a bad replapse

Reply
Jamie Hughes avatar

Jamie Hughes

I know what you mean! It's hard to know what the right answer is sometimes with this silly condition. Wishing you the best of luck as you navigate these decisions with your neurologist, Doreen.

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Leanne Broughton avatar

Leanne Broughton

I grew up drinking lots of milk., never soda pop or water, sometimes juice. I have read this about milk and have consciously reduced my intake. I was diagnosed in 1998 and started Rebif soon after. I do still put milk in my coffee and on my cereal. I am now SPMS, and am definitely progressing.

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Jamie Hughes avatar

Jamie Hughes

Leanne, that's so good to hear. Thanks for sharing your experience with us!

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