Patient Blogs | Multiple Sclerosis
What Having MS Has Taught Me
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I’ve always considered myself a strong woman. Life has thrown a few hardballs at me since I was a little girl. I experienced loss early in my life. First, I lost my father when I was 5 years old. I couldn’t understand death yet. My life had just started, and I was already losing an important figure in anyone’s life, a father. Then, at 18 years of age, I lost my mother. The most important person of my life and my only support was gone. I was in my first semester of college when this happened. One more time, I lost. But this time around, my life was turned upside down.

Life continued and I faced so many obstacles just to survive. On my own and with many responsibilities, I strived. I had my first son, graduated from college, and moved to the U.S. Little did I know what was about to come.

The high levels of stress I endured during my years in the workforce were beyond anything I could’ve anticipated. Quite frankly I attribute my MS diagnosis to this. But I was Wonder Woman, and I could do it all. In the name of prosperity, I kept working long hours, being supermom, and wearing as many hats as I could. Not that I had other option anyway.

Then, along came MS with its fulminant force and shook my world. Right then and there, I learned my biggest lesson: “Life is today.” MS forced me to stop. It literally stopped me in my tracks. I’ve had no choice but to pace myself ever since.

I’ve learned to prioritize and take it one day at a time. I’ve learned not to mourn the old me and not to worry about who I will be tomorrow. The past is gone, and tomorrow is uncertain. I have no control over neither. Why worry then?

Of course, there’s not just one thing we can learn from MS. It’s really tough to live with it. Every day is different, and many times even more difficult than the one before. And when we think we nailed it, something new comes up and we have to adjust and modify one more time. Get me off this ride already!

Let’s clarify that being strong, by no means, is being positive all the time and having a great attitude. I think we show our real strength when we’re at our lowest, but we get back up and come back stronger. That’s what makes us real warriors, invincible and resilient.

After MS, I see my life from a different perspective. I reorganized my plans and goals and focused on living life. My grandmother told me once: “Life is about living it. Good or bad, you just have to live it.” Those words stayed with me forever -- especially coming from a person that had such a hard life and yet was so optimistic and grateful for just breathing and taking the sun every day.

Now, I fully understand what she meant. I have only one life, maybe different from average people, but it’s my life. And it’s my goal to live it to the fullest and make the best out of it. I know now how strong I can be. I know now what I’m capable of. I know now how important it is to create memories with my children. I know now the tremendous value of a good friend. I know now that life is short and unpredictable and that it can change in a blink of an eye. I know now what my purpose is.

As the controlling person I can be, it was very hard for me to understand that, certainly, I don’t have control over my multiple sclerosis. During the course of my disease, I’ve had to adapt to the physical changes it has caused me. Accepting those changes must be one of the hardest things I’ve had to come to terms with. But then I look back and go over those early experiences I had and how I overcame them. I remind myself that I must be a tough cookie to go through all that unscathed.

MS is a learning experience and a big reality check. Getting to the place I am right now took time, patience, and practice. I honestly don’t think I’m all the way there yet or if I ever will be. Everybody has their own timeline, and their grieving process is unique.

Now, being MS-strong is something else. We MSers are a different breed. I salute all my fellow MS warriors for bravely combating all the obstacles and resisting. The challenges we have to face are not easy.

I’m aware that my life will never be the same. Or that it won’t be what I planned or expected it to be anymore. But who says it can’t be better? Better in the sense of being more fulfilling, more satisfying, more accomplished. I’m determined to make it so.

These lessons learnt from MS have become the principles of life I now abide by:

  • I’m my best advocate.
  • Nobody is coming to save me; it’s up to me.
  • My time here is precious, and so is my quality of life.
  • I can’t just take “no” for an answer when I feel uneasy.
  • I’m the decision-maker regarding my health.
  • My opinion matters, even though I’m no expert.

I’ve definitely learned many things after being diagnosed with multiple sclerosis. It’s probably been my worst and best teacher. And I’m sure that MS has a few more surprises in store for me along the way. MS never ceases to surprise me. I’m not worried about it though. My focus is on making the best out of every moment I have while I’m still alive.

I’ve said this before: “MS has been the biggest setback of my life but also that one thing that opened all doors for me.” Currently I’m involved 100% in the MS community to my satisfaction.

  • Leading a support group where I can help others connect and create a sense of community and navigate through their journey, feeling less scared and less overwhelmed by the unexpected
  • Partaking of MS awareness campaigns beyond our borders, connecting with other MSers around the world regardless of our ethnicities
  • Mentoring newly diagnosed patients and helping them find the way, sharing resources and all I’ve learned from my own MS, too
  • Writing articles like this one, where I have the chance bring what was missing, the voice of the patient
  • And the fun part -- the interviews, the podcasts, the social media collaborations, etc.

Having MS is not fun at all. It’s actually the hardest thing I’ve had to deal with in my entire life. But ironically, sometimes I feel like my life started after MS. At least the life that brings more joy and more smiles to my face. The life that has allowed me to do the things I like and always wanted to do. The kind of life that every person wants: the one with a purpose.

 

To connect with other people living with multiple sclerosis join our MS Facebook Support Group.

 

 

Photo Credit: aire images / Moment via Getty Images

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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