People with MS have to look at each day, and allocate energy accordingly. Just like your phone battery, we have to be mindful of how we use up our time and energy. This really helps me focus on the things and people who matter most.
I had the pleasure of interviewing Julie Stamm, Author, Mother, and MS Warrior. Julie is an MS Champion, as well as a Mission Moment Speaker and a Walk MS New York City participant.
Thank you so much for joining us! Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
Of course! My name is Julie Stamm, I was born and raised in Brooklyn, New York. I was officially diagnosed with multiple sclerosis (MS) on January 8, 2007. I try not to let MS define me; the thing that does define me is being Jack’s mom. He is my everything. I recently ( as in March 2020, in fact) published my first book entitled ‘Some Days We…’ based on our experiences as a mother and son, overcoming the obstacles MS can impose on everyday life.
Do you feel comfortable sharing with us the story of how you were diagnosed with multiple sclerosis? What did you do to not let that “stop you”?
It took many years to get officially diagnosed. I can date my symptoms back to 2001, but it was in 2005 that my symptoms became too debilitating to live the life I once knew and loved. In 2007, after an official diagnosis, I felt vindicated. I had known something was wrong for many years but was dismissed by innumerable doctors. Knowing gave me power. Knowing who the “man behind the curtain” was gave me the courage to fight. It wasn’t, and isn’t, always an easy battle and the unpredictability of multiple sclerosis is by far the most challenging aspect for me to accept. A lot of people living with MS say, “I have the disease, but the disease does not have me.” The truth is, this disease does have me but that’s ok.
I’m not the same woman I was before MS, but I certainly am proud, of the woman I have become, in spite of it. MS never stood nor will it ever stand a chance of stopping me. At first, many aspects of this disease seem unbearable, but you fight through it. We fight! We battle and adapt to our changing abilities. I truly believe that I am where I am today because this is where I should be, need to be, and belong.
I have a perfect, loving, and supportive partner. We have a beautiful son and each day, regardless of the pain, the worry, the lack of control; I am grateful. Yes, I would love to one day wake up and not have to look down at my legs and wait for them to wake up. I would love to one day wake up and not have to worry about where every bathroom will be and if I will be able to make it there in time. I would love to one day wake up being able to walk and dance as much as I used to. Most of all, I would love to one day be the best mom in this world. For now, I will be the best me that I can be. I will find solace knowing that I’m not doing such a bad job. The reality is that life evolves for all of us. We all want more for our families. We all face obstacles that we need to overcome. We are only here on this earth for the blink of an eye, and I hope my moments will matter. ’Some Days We…’, the book I wrote is my attempt to leave a footprint.
Can you tell our readers about the accomplishments you have been able to make despite your chronic illness?
My greatest accomplishment is my son, Jack! He’s three and three quarters (I dare not say just three). Ha! He is such a loving, sweet and most importantly, kind boy. In the beginning, many doctors told me I should not have children. While he was not a planned pregnancy, he was and is my biggest blessing.
’Some Days We…’, my book, is my second biggest accomplishment. I found it hard, honestly impossible, to find a book that is geared towards younger children that focuses on the positive ways you can adjust to life’s challenges. I came up with the idea when I started researching what books are available to read and teach kids about MS. Most of what I found was a bit too technical and a lot to take in at such a young age. My process in creating this book was easy; each page is based on a day that my son and I have lived. I talked to Jack and truly listened to what he knows about MS and how it impacts his/our life. He’s young now, I’m the only mom he has had, so to him I am perfect. Sure, we could do things differently, but I’m comforted knowing he is happy, healthy and prepared to meet the world with a helping hand and empathetic heart! I feel that in my 40 years on this planet, I have made a difference. I try to be the best person I can be, share positivity and support anyone in need of a hand.
What advice would you give to other people who have MS?
Stay on your treatment plan! Whatever your approach, make sure you find a doctor you trust, respect, and who genuinely cares about your wellbeing. Currently, we have no cure, but I do believe that one day in the not-so-distant future there will be one. When I was diagnosed in 2007, there were only three treatment options available to me. Since then, we are seeing new drugs introduced at a rapid pace. Now, there are oral medications, medications with greater success rates for reducing relapses, and options for all forms of the disease which, in the past, seemed to have fallen by the wayside. Slowing/stopping this disease is the most we can hope for until we find a cure. Finding the right treatment for YOU is difficult but worth it when you figure out what works.
I also recommend people living with MS connect with the National MS Society. They offer support and countless ways to get involved, whether by participating in annual fundraising events, volunteering or becoming an MS advocate.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
My partner, Adam! He is phenomenal! From the day we met seven years ago he has been nothing but loving and supportive. He doesn’t make me feel “sick” or pity me. He helps me through everyday challenges and never wavers on his unconditional love. When we first started dating, I told him that I have to use catheters (it was such a fear of mine of how he would react). His response was “So? Some people need glasses to help them see. Isn’t it kind of the same thing?” That quote sums him up, nothing is too challenging in his eyes. You have a problem; he will get you through it and make it feel like that mountain is smaller than a molehill. I am truly lucky we met and that I get to wake up next to him every day. He adds color, life, and humor to every day.
How have you used your success to bring goodness to the world?
Many years ago, I became a patient advocate for MS. Hearing people’s stories and challenges, then helping them through what some might consider the hardest thing in their life, really taught me the value of keeping a positive attitude. I felt that through my advocacy and teaching others to be their own advocate, I had a calling and eventually a need to change the zeitgeist in a broader way. I think changing the apologetic and negative tone of the materials will make people understand how we (people living with MS) feel. My book has only been out for one week and has sold close to 200 copies. To me, that means 200 families understand MS a little bit better, and that is a great feeling!
Can you share “5 things I wish people understood about MS or knew about people who live with an invisible illness” and why.
1) Each day with MS is different. It’s really hard for people to understand this part. I wish I knew what each morning would bring, but the reality is some days are just not great.
2) People with MS aren’t lazy. I’ve heard MS referred to as “the lazy disease.” People with MS are anything but. We fight daily.
3) Even if people living with MS look ok, we might not be. I smile through it all but there are days that the pain makes it extremely hard.
4) People with MS have to look at each day, and allocate energy accordingly. Just like your phone battery, we have to be mindful of how we use up our time and energy. This really helps me focus on the things and people who matter most.
5) When it comes to a life affected by MS, no one can predict where you will be in 10 years. People predicted I would be in a wheelchair 10 years after my diagnosis. That haunted me for a long time. But now it’s 13 years later and here I am, still standing! And you know what? Even if I end up in a wheelchair tomorrow, who cares?! I will adjust and adapt just like every other challenge that has come my way. That’s life. You adapt and you make it work! Plus, I want to design some cool walking sticks so what better way to test my own product 🙂
Can you please give us your favorite “Life Lesson Quote”?
“On with the dance, let joy be unconfined.”
I love this quote for a multitude of reasons, but here are a couple:
I used to be a dancer and in my mind I still am. This quote reminds me to keep dancing, whether literally or just to close my eyes and remember the moments of how it used to feel.
The second is: I was married many, many years ago. Though I loved/love my ex-husband, I wasn’t happy and my joy “was confined.” I was drinking a cup of tea one day and this was the quote on the tag. It was my wake-up call to do something. I am beyond grateful that it gave me a little nudge to get out of a relationship that had run its course.
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
There are so many people I admire so it is tough to pick just one. Having said that, I’d have to say Michael J. Fox is a hero to me. He handles life with a chronic illness with grace, and dignity. He shows the world daily that he is a fighter, and that nothing will get in the way of his success and happiness.
Thank you for all of these great insights!