multiple sclerosis

A decade and a half ago, Julie Stamm was a typical twenty-something urban professional, with a promising financial services career in Manhattan, a new romance, and marriage on the horizon. But then the young woman received a shocking diagnosis: multiple sclerosis. Now, years later, with a young son at home, she’s written Some Days We…., a picture book to help kids whose parents have a disability navigate what can be a confusing and challenging life.

Novelist Steven S. Drachman, who worked with Julie years ago, interviewed her for Audere Magazine about her new book and her new life.

Filling a gap in children’s lit

Audere: Your book is really charming, and congratulations on the new ground it breaks. Talk about why you wrote the book – what gap were you trying to fill in children’s literature?

Julie: Due to the cognitive issues imposed by MS, I immediately started keeping a journal of sorts for my son, Jack, to memorialize some of the moments I knew I would like to remember but was also likely to forget. I often reflected on these “letters to Jack” to be reminded of both the positive and negative moments we have experienced.

While I have always been open with him about having MS, he was too young to fully understand the implications of the diagnosis. As Jack grew, so did my need to find materials to share with him to help him better grasp what we were up against.

Throughout the search, I kept finding myself saddened by the apologetic and depressing tone of the materials. I decided then to reflect on my letters, and truly listen to what Jack felt about the days I found the most troubling.

A diagnosis changes a life

How does the book reflect your real life?

Each page in the book is based on a day in our life, a moment we both endured but saw through a different lens. In talking to Jack, I discovered that moments that ended in nights of crying myself to sleep, he recounted as great adventures. So that’s why I wrote the book from his perspective. I knew I had to run with this, to let other MS parents know that they are not alone, and that if we truly stop focusing on the guilt and start focusing on what our kids see, we will all sleep more peacefully.

I knew you before your diagnosis, and it may be hard to believe, you and I haven’t seen each other in person, or spoken, since you were diagnosed. Do you think that it has changed you? Do you feel as though, post-diagnosis, you are a different person in a way? How did it affect you and especially your personal relationships.

Wow, that is pretty crazy to think that I haven’t seen you since I was diagnosed. I can say wholeheartedly that diagnosis has changed me. I don’t really remember the old me. I rely on others’ memories and hope that I have always been the kind and empathetic person that I strive to be. I guess the way that it has helped me is that I try to live each day in a way that I would be proud of in someone’s memories.

Another way it has changed me that my memory isn’t what it used to be. Adam, my partner, would agree that if we ever argue, his best stance is to wait five minutes, because I forget quickly.

Balancing optimism and honesty

How did you thread the needle, in writing the book, between being overly cheerful and overly grim?

From the outside, I look like a completely put-together parent, ever-present, in control of everything. Others don’t see the worry, that I have to calculate picking up each leg for its next step, the fear that one day my son, Jack, won’t listen to my “freeze” request, the hope that everything that holds me back won’t somehow hold him back.

So the book is written to reassure children that regardless of the obstacles or unpleasant situations they may face, they will persevere. When I wrote the book, I was focused on MS. Quickly and through feedback, I have realized how universal the message is. All parents have moments where they feel inadequate. We need to remove the stigma, shame, and judgment.

You chose to have a child after the diagnosis. Talk about what went into that decision. Is it unusual for women with MS to have children?

This is a great question. I had been married for many years. My ex-husband and I had tried to conceive, and when it didn’t happen we came to terms with not having children. Also, medical experts had advised against having a child. A huge part of our separation was so that he could have a family and be the wonderful father I know he would be and could be. While there were many other reasons, this one was a big self-inflicted burden at times.

Fast-forward to 2013, I met Adam. I told him that I didn’t want anything serious and was definitely not having children. Well, both of these statements turned out to be false. I was and am madly in love with him. The pregnancy was a surprise to us both. While Jack was certainly not planned, he was and is our greatest gift. Every moment with him is a blessing that I refuse to ever take for granted.

What has been hardest about raising a child and dealing with MS at the same time?

I think guilt is my biggest obstacle. I want to give him everything. I want to have endless amounts of energy and be able to run all day with him. One thing this global pandemic has highlighted for us all is that even on days that you are stuck in, you need to make the best of it.

The future of multiple sclerosis

Are you optimistic about the treatments doctors are working on for MS?

Optimistic is an understatement. When I was initially diagnosed there were only three treatment options available. Now there are countless options. Options with greater success rates for reducing disease activity. Options for all forms of the disease, which in the past seemed to have fallen by the wayside. I truly believe that within my lifetime there will be a cure.

And how is your own health?

When I was diagnosed, they expected me to be in a wheelchair within 10 years, but guess who’s still standing 13 years later? Me! I will continue to fight this disease for myself and others. I will continue to be in trials to help find better options for future generations. This disease chose the wrong girl when it chose me. I’m a fighter and I will win this battle.

^^^

Julie Stamm’s picture book, Some Days We…., is available from Amazon, Barnes & Noble, and at your local bookstore.

Steven S. Drachman is the author of Watt O’Hugh and the Innocent Dead, which is available in trade paperback from your favorite local independent bookstore, from Amazon and Barnes and Noble, and on Kindle.