Meet MS Warrior Stephanie Walder
Living with MS
written by Stephanie Walder
Stephanie Walder (51), 135 155 lbs., 5 ft. 5 in. Brown Hair, Brown eyes. Well this is my opportunity to share some personal notes. I really like my County Government job in transportation engineering because I like creating a sense of place in communities. I also like being able to work from home during Covid-19. I like transportation because I’ve liked driving ever since I was 16 because it gave me a sense of freedom to go anywhere. I was born in Amityville, NY and we moved to Northeast Philadelphia when I was a kid. My dad managed a Jewish deli and well I worked there when I was 10 years old and even through college some when I went to Drexel University. When I was 40, I was in the best shape of my life (like the boflex commercial). I used to exercise all the time (boxing, dancing, swimming, martial arts, roller-skating). I used to run every day and I even did the Tough Mudder.
Anyway, in my early 40s I experienced something unimaginable. I was on my way to work in Baltimore one day and I collapsed on the sidewalk. My auto-immune system suffered a massive attack (It’s called Transverse Myelitis) and it left a scar on my spine which blocked the messages from my brain to the rest of my body. Being from Philly when I was down on the street all I kept thinking was someone was going to snatch my work bag as I watched the pedestrian walk signal countdown in seconds over and over again. And yes, if you are wondering, no one offered a hand much like I was just another homeless person sitting on the side of the street.
I was a single mom with two young kids at school so I was on a tight schedule and this was too big of an interruption. When the shock waves passed I continued to my desk and on to lunch and it happened again. A good friend/co-worker (Odessa) stepped in and insisted that if I didn’t go to the hospital she would drag me there. Believe it or not I went to a really nice suburban hospital and sat in an emergency room for a couple hours unseen until I had to pick up my kids from the bus. My friend call came by later that night mad as heck and took me to Patient First and then the Hospital. My kids went to another dear friend’s house (Marci) and then luckily they could stay over. I also had to stay over at the hospital. They did some MRIs in the morning but when they wanted to keep me there and do a lumbar puncture I said okay BUT what I really did was call my friend and tell her they were discharging me and asked her for a ride. I pulled out the IV and made a dash past the desk. My friend was so confused. They insisted I sign a waiver, a hospital worker looked straight at me and told me go grab your MRIs before you leave. My friend was so mad. I am a terrible patient. I did not want to be diagnosed with anything on my record and risk losing my license and not being able to drive because that’s really all I did – drive myself to work and drive my kids to school, bus, and activities.
For the next year I suffered intermittent paralysis from the neck down. This autoimmune malfunction later led to my diagnosis of Multiple Sclerosis. I will never forget the day I was intermittently paralyzed when I fell on the tracks at the MARC Station in Laurel. Why, I’ll never know, why, and it still haunts me BUT it reminds me to always get up and keep going no matter what. And basically, every bout of intermittent paralysis after this can’t measure up to that because it couldn’t be worse than that.
I remember the day I got diagnosed with MS in March 2016. I thought my neurologist was really good at delivering bad news when he snuck it into the conversation. Then my engineering brain spent time trying to figure it out (think I could bx it). I remember deciding if I was going to call my now husband and tell him because we had been dating at that time and well if I thought I wouldn’t be walking one day then I wasn’t going to “do that” to someone. BUT I took that chance and he said no worry he had my back. I often wonder, because “we don’t look sick” if anyone thinks “well it’s not that bad”. That’s MS though. You really don’t know when and how bad the relapses will be but you know that you have to keep your mind positive and “try” to exercise and eat right to take care of yourself.
About a year later I finally joined a support group. I often describe this now extended family, as one of everybody. I could easily see myself as anyone in this group, i.e. – one with a cane, one with a walker, one with a wheelchair, etc. and despite the efforts for cures in this world one thing for certain is our group paints a clear picture of what long term therapies might or might not have done for fellow MSers. This support group really helped me navigate through the physical symptoms and separate the mental symptoms of MS. We always listen and then focus on the positive. The pandemic makes me nervous because our pharmaceutical drugs may suppress our white blood cells to low levels, thus weakening our immune systems to fight off infection. Everyone is being ultra- safe though.
When I learned about RAMMS I thought it would help me get more motivated to how I used to be in-shape running all the time. My neurologist asked me why I stopped, and I told him I just don’t feel motivated anymore and he said you don’t need motivation to exercise, you just need to do it. RAMMS, you know, especially if you are reading this, you set the bar high in terms of inspiration and motivation. As a team there is always someone to lend support no matter what level of effort you put in. What else can anyone say but, simply wonderful!
Okay so how do I manage MS, my job, my family?
Since I am probably a control freak, I manage stress ahead of time thus getting a little stressed trying to minimize stress. I furthermore compartmentalize it, and I help others for good karma of course, because there are bigger fish to fry. As always, I stay on top of things, making creative to-do lists (well text messages) for my two teenage daughters every day and well I do not make my husband Stan a list because I wouldn’t dare conforming to be the type of girl that would make a honey-do list. However, I can’t forget, I must include my two aging parents that I respectively moved from New Jersey and Philadelphia last year into subsidized senior apartment complexes in Pikesville, MD (because they are divorced, they are in separate buildings, right across the street from one another.) My mom claims everything is broken and needs me to bx it. My dad on the other hand doesn’t care and is happy he can be near his grandchildren and daughter. He is so resourceful with his medical benefits and department of social services I often wonder how he managed to do it all with a free flip-phone from the VA. We have no pets anymore. Although our goldfish seemed to live forever without a clean tank and then well our cat ran away, and my bird was kidnapped. True story! During Covid-19 when I couldn’t get to see my mom that much, I finally showed up with a parakeet for her. She now has a companion, Daisy, to watch TV with and debate with all day long.
My family is amazing. My oldest daughter, Jaden Yanovitz (18), is attending Drexel University from home this Fall to study Business and Marketing. She liked the 5-yr. co-op program because she was ready to work and earn towards tuition and room and board. Drexel’s slogan is Ambition Can’t Wait, which is so true for her. While she has all the “what if’s” running through her head about college it is an honor to see her growing and thriving. I want to take a moment to state that Jaden’s personality is stellar. She’s a foodie and becomes a fair-weather brand fan so she can get lots of free snacks in the mail, and she knocks out her school assignments. She is a fierce feminist. Trust me you don’t want to get into an argument with her.
My youngest daughter, Gabrielle Yanovitz (16) is by definition a dreamboat. She is the nicest, patience, loving, kind, heart of gold child, friend, student, grand-daughter, daughter, sister, you will ever meet. That said, she also never stops humming (although she says it singing), never puts anything back in its place, knocks into everything, and naps in the middle of everything. She is creative, cooks, acts, paints, plays in a rock band, exercises, and is really pretty. She has had straight A’s since pre-school and all her teachers and family love her “nice” competitive spirit. She is heaven-sent. Gabrielle is President of her youth group, B’nai Brith Youth Organization (BBYO) and leads her Chapter in weekly programs, events and fundraising.
My incredible husband, Stan Walder (64) is literally the hardest-working provider and loves us too much if that’s actually a thing. He eats all the snacks and most of the food and never gains a pound. He fuels his body because he is always working installing drywall and painting. He constantly runs his magic bullet making protein smoothies, lifts weights, and is meticulous about his appearance. Stan and I got married in 2016, within a year of our brst date because we just knew.
In some ways we’re a team but I’m not sure who the coach is, psych, it’s me. Although it seems we all take turns supporting each other, when needed. Obviously, it shifts.
With MS, I am exhausted but determined. I am really good at pretending it’s not numb but rather I got up too fast. I only walk with others because I don’t want them to see how slow, and oddly left side unbalanced, I am sometimes. I am sharing some of my internal thoughts with you because I know some of us really think the same way, especially the husbands and wives and fathers and mothers and men and women of the group (yes – that was everyone). Externally nothing is apparently wrong. And so, it goes, and so it goes. Stay strong physically. Stay strong minded.