Encontrar una perspectiva positiva con mi trabajo de concientización médica me ayudó a vivir con EM durante 38 años

English

As told to Nicole Audrey Spector

A few weeks after my college graduation, I was in a serious car accident. I had a concussion and an open wound that required 16 stitches. I don’t remember the accident, but I do remember a really strange feeling that haunted me for a while, my feet were numb.

I had a consultation with our family doctor, who examined me and told me that my feet were numb because my shoes were too tight. That seems silly to me now, but back then I believed it. I didn’t want to think there was something wrong with my health. Who would want to do that? Particularly not at the age of 21 and when I was establishing the successful life I had always dreamed of.

Five years later: I was walking to the bus station after work and noticed a strange sensation in my feet, they were completely numb but I could feel the floor. I looked down and saw he wasn’t wearing shoes. My high heels had come off and I didn’t even notice. And that was not all. I felt weak and tired and I didn’t understand why. Something was really wrong.

I visited a general neurologist for a comprehensive examination. This occurred in 1986 and at that time MRI was not used, only lumbar punctures and CT. I had both tests done to get a diagnosis.

When the results were available, the doctor called me into his office to tell me that I had to quit my job and that I should move into my parents’ house to live with them again. Indeed, something was very wrong. But what? The doctor did not give me a definitive diagnosis.

But he told my parents, whom he knew. My mother informed me that she had
multiple sclerosis (MS). I had not heard of this disease, but I understood it immediately, due to my mother’s frightened face, which was something devastating. I held back my tears. I had to be strong for my mom.

I was always taught that I should be brave and that I should listen to the professionals. So I listened to the doctor’s advice without even understanding what was happening to me. I quit a job I loved and moved into my parents’ house. It was painful, but I stayed positive. I felt this mysterious diagnosis was a challenge. I wanted to learn everything about this disease that was robbing me of my hard-earned independence.

The local library had mostly old publications, so I went to a bookstore and bought all the books related to MS. I wrote letters to national MS organizations requesting information and immediately received generous responses, including personal phone calls.

After a recommendation from my neurologist, I went to a local MS care center. That was the smartest thing I’ve ever done.

On my first visit, a registered nurse at the center told me, “never let MS define who you are.” Those words activated a light inside me. They inspired me. I knew I had to dedicate my life to MS awareness work.

But I had to go through grueling treatment for my MS flares. This was the dark ages when it came to knowledge of the disease. The only thing the doctors offered was to inject me with lots of steroids, which were helpful for my overwhelming fatigue, but caused horrible side effects. My weight increased a lot and I was always quite hungry. My doctors banned exercise, thinking that physical activity could cause another flare. This is now known to be untrue, but, as I said earlier, those were the dark ages. I followed doctors’ orders and became sedentary and miserable.

My family and my husband (who I have now been married to for 35 years) helped me through that horrible time. They showed me how important it is to have someone by your side. Their love sparked my desire to help others. No one should face MS alone.

Cathy and her walking stick, 2024

I participated in various forms of help. I led an MS support group that allowed me to make connections between doctors, other MS experts, and patients. We talked about important ideas that weren’t talked about much at the time, such as supplementary medicine, including acupuncture, which can be helpful, and we also talked about the importance of awareness and inclusion.

Together, we determine a positive outlook on living with a difficult illness.

My husband and I suggest trying to have a baby. After consulting with experts (who were few at the time), I became pregnant and had an excellent pregnancy and delivery. Now we have a wonderful son.

Much has changed since then. The MS situation is very different. There is an awareness of this chronic disease and there are unique medications designed to control flare-ups. I have followed each new development with passion and curiosity and am as dedicated to awareness work as I have always been. Thanks to social media, I work internationally and have made connections with MS patients and experts around the world. It’s amazing.

I don’t want to make it seem better than it really is. MS is difficult and although I have more effective treatment now, there are still challenges. For example, until now I can’t feel my feet. I have cognitive dysfunction, bladder dysfunction, and other comorbidities. But I also wake up every morning to live a new day. With my husband, discover new areas of my capabilities. And with my cane, I touch new territories.

MS usually occurs and does not go away since a cure has not yet been discovered. In the meantime, we’re here supporting each other on our worst and best days. The MS support community is a trusted place. So take advantage of it because MS will never define who you are. We can do hard things together.