One of the happiest times in my life was when I became a mom. My two boys are my heart, and I gave them everything I wished I had gotten growing up. I was going to be SuperMom whether they liked it or not! I volunteered at school, helped with Cub Scouts, went on field trips, and served as team mom. I started baking for school events and became known as the “cupcake lady.” For my quiet time, I refinished furniture, read, dabbled in interior design and gardened. My life was busy, full, and wonderful. However, I couldn’t help feeling like one day the other shoe would drop and something bad would happen.
My name is Brenda and to understand my MMN journey, it may be helpful to know a little bit more about the younger me. I am the baby of the family and a Taurus, so I started out stubborn and willful. I will admit I was a nightmare growing up. I didn’t have a good relationship with my father until much later in life, and because of that relationship, I made some very unhealthy personal choices and ended up being the survivor of mental, physical, and sexual abuse. This information will come in handy for understanding my journey after diagnosis. I will say, many people don’t understand why I would not change that period in my life, and my answer is always the same: It has made me into the fighter I am today, and I like her!
The three loves of my life are my husband Michael and my sons Jack and Grant—okay, really, there are five loves because I must include my two puppies, Lexi and Louie! This was the family I always dreamed of having. My husband was in the Air Force for 20 years and we moved a lot. So when I got pregnant with Jack, I was fortunate to just focus on being a mom and military wife. I loved it! But because of my past, I struggled with anxiety and depression, and trust has always been hard for me. Even at my happiest, when everything was going right, I always feared my happiness would be taken away.
Around 10 years ago, I started noticing some changes in my body. I was limping, and my legs wanted to stop working after I walked about 50 feet. The toes on my left foot had no range of motion, and my legs were constantly cramping. As many moms will attest, we’re the last ones to worry about ourselves—it’s not that bad, I’ll make an appointment later, deny deny deny! I kept telling myself it must be a pinched nerve in my back.
It took two years before I finally woke up and said, ‘Something may be wrong here.’ In September of 2012, I went with my husband to a work function, all dressed up in my strappy heels, feeling pretty good. For once, I wasn’t in jeans and flip flops! Out of the blue, I felt some tingling in my left foot, and then it was like my foot just disappeared. I couldn’t feel it, and I went down hard. As you can imagine, I was mortified that I had just fallen in the most ungraceful way while strutting across the hotel lobby. I took my shoes off and stood up, trying to get my foot under me again, looking around, and feeling grateful a plant blocked my swan dive to the floor. After that, every time I wore shoes with a heel, I could feel the tingling start, and I would have to stop, hold onto something, and wait it out. Something was definitely wrong.
In January of 2013, I finally got myself to my family doctor. In my defense, I just wanted to get through the holidays. My doctor looked concerned when I told her everything that had been going on and sent me for an MRI on my back. When that came back normal, she sent me to a local neurologist, and I will admit, I was so confused about where this was heading. After my initial evaluation, the neurologist brought me back in for the dreaded nerve conduction study. My results were a bit of a head-scratcher, so he referred me to a different hospital for further testing.
At this point, I really started getting nervous. My husband and I drove two hours to the other hospital. I was given another evaluation and another nerve conduction study. As I lay in the hospital bed, the neurologist told me everything was pointing to ALS, a fatal Neuro generative disease. My ears started ringing. I looked at my husband who was in shock, and I burst into tears, covering my face with my hands. My worst fears had happened—the other shoe had dropped.
I don’t remember much after that besides going through the motions of bloodwork and more testing, then scheduling another MRI, a lumbar puncture, and a CT scan. I remember driving home, it was a beautiful sunny day and I felt numb. My sons were both in high school at the time—they were all I could think about. I didn’t know what to tell them. Would I be around to see them graduate, get married, have kids? I was terrified.
Over the next several months, I went back and forth between neurologists, getting testing done. If you’ve ever had a lumbar puncture, you know you’re flat on your back for several days after. Well, as I laid there after my lumbar puncture, I started contemplating everything I had been told. Then, I started to get mad—remember that fighter I told you about earlier? She started to surface big time. I just kept thinking back on everything. How I had broken my leg a few years earlier and started physical therapy. I had cramping then, and my ankle was weak, too. I called and got my physical therapy records faxed over to me so I could scour every page to find something, anything, that would point in another direction.
When my husband and I went to my local neurologist to get the test results from my lumbar puncture, he told us everything came back normal. I asked, ‘What should we do now?’ He said, ‘You can get a second opinion if you want, but I would get your affairs in order.’ Then, he got up and left the room.
Like deer in headlights, we walked back to the parking lot, looked at each other, then my husband started to cry. I consoled him, but I was furious. I needed a doctor I could trust. I called my other neurologist, and from that day on, he became my primary doctor.
After some other tests came back negative, my neurologist said there was one last thing we could try. He set me up for a five-day loading dose of IVIg and then three two-day treatments three weeks apart. A few days into the loading dose, I went to the market with my husband. As we were walking down the aisle, he turned to me and said, ‘I don’t hear you coming.’ Apparently, my drop foot had been a bit noisy. The treatment seemed to be working, but trust was not my strong suit, I was scared to believe it was true. When the time came to see my neurologist, he confirmed that IVIg was working. I had MMN, a rare yet treatable disease that causes muscle weakness.
I felt so relieved that it wasn’t ALS, but at the same time, I thought: MMN, now what? Will I end up in a wheelchair? I didn’t know what to expect for my life, and the next few years were a roller coaster. My strength was up and down. I wore a leg brace for my drop foot. I was scared to leave the house by myself. I sat in my closet crying as I loaded up all the heels I could no longer wear. I didn’t want to wear flats all the time—I was a young 52-years-old!
As a mom and a wife, I felt so much guilt. I was used to taking care of my family, but now, they were the ones taking care of me. It was hard for me to ask for help, because asking for help meant that I was weak—I didn’t want to be weak. I felt frustrated, depressed, and anxious about my future. I liked being in control, but my world was spinning out of control.
Here is where the first part of my story fits in, and because I think this is so important, I want to be honest. When you’re a survivor of abuse, you crave control, because when you are in control, you feel safe. I think this is true for anyone who has experienced trauma. With MMN, I couldn’t control what was happening to my body, so all these feelings I thought I had put to rest a long time ago came bubbling back up. I decided it was time to get help and go to a therapist. With her help, I started the process of forgiveness and stopped blaming myself for things out of my control. MMN was out of my control, but how I handled it was something I could control. She helped me understand that this was like a grieving process, and when I came out the other side, my new normal could be just as wonderful. I had so much to be grateful for, most of all the unconditional love from my family.
Over time, I began to realize that MMN was just a part of me; it did not define me. I was going to live my life on my terms and choose to be positive. I also realized that I wasn’t alone. I found an MMN group on social media and reached out to GBS/CIDP Foundation International and started to get involved. Honestly, I feel like I’m one of the lucky ones. So many go through a much harder process than I did to get diagnosed. I found myself speaking with so many people who had just been diagnosed with MMN and were scared. I became an unofficial face of MMN by sharing my story online, speaking at events, and advocating for bills and funding that will give people choices for treatment options.
Today, I feel like I’m in a good place mentally, emotionally, and physically. I’ve been working with my neurologist to stay on top of treatment, and I also work with a functional medicine doctor on finding natural ways to feel better. Yes, there are certain things I can’t do anymore. When my older son decided to move to New York, I knew I couldn’t look at apartments with him. All those stairs would’ve been awful. I had to learn to be okay with saying, ‘Go with Dad, I’ll be here,’ and not feeling like I was missing out. That was hard. But I’ve learned there are other ways to spend time with my family that are just as fun and meaningful.
Instead of focusing on the things I can’t do, I wake up each morning and think about everything I’m thankful for. That’s the best advice I can give— take it one day a time. Be kind to yourself and listen to your body. Life with MMN may seem like a huge mountain to climb, but don’t give up. Make adjustments, do things differently, and you’ll find you can still live a full life.
Do I have bad days? Of course. But I choose to look at MMN as my new purpose. I was given this for a reason. The other shoe did drop, but I survived—and I didn’t lose anything. Instead, I gained strength, patience, understanding, kindness, and trust in myself. I learned to not take anything for granted and to take advantage of what life sends your way. My biggest hope sharing my story, my challenges, and my many hidden scars is that I might be giving courage to someone who needs it. Thank you