Introduction

It is hard to believe that we are at the end of March. I feel like the days are short and the weeks are long. There is never enough time to finish everything you want to accomplish in the month of March. As a student, there is an emphasis on the future in March because all you do is diligently work on final projects, write your last papers, and study for your remaining exams. However, I try to stay present and focused for the 31 days of March because March is Multiple Sclerosis (MS) Awareness Month. I have never explicitly written the words “My dad has MS” on my blog before. It is not because I am ashamed of his diagnosis but because it is something that one constantly has to process and for the longest time, I struggled to put it into words that could be shared publicly. I think that this is something that people who do not have a loved one with has a long-term medical condition (especially one like MS) do not understand. Their diagnosis is something that you constantly processing and reprocessing. My dad was diagnosed ten years ago, and I just now feel that I have finally found the words to talk about it on my blog. I believe that there are lessons buried in every part of your life and, sometimes, you are not completely aware of them. It has taken me a while to realize and understand these lessons. Today, I feel ready to share with you all the lessons I have learned from my dad’s MS diagnosis. 

Do Not Sink Into Anticipatory Grief…

Anyone who has a family member or friend with a disease or illness knows what anticipatory grief is. Maybe they do not use those exact words, but they understand what it feels like. Anticipatory grief feels like the sky when it is about to rain. You can feel the storm in the air, heavy and constant and out of your control. It can be easy on those days to just avoid going outside, call out of work or cancel your classes, and succumb to the depressing rain. Anticipatory grief is something that never gets easier, and it makes you want to hide away from it all. I feel it most in my chest; it is this weight that repeatedly reminds me of my father’s morality, even if it is a long way away. Instead of hiding away from the storm of anticipatory grief, I make sure to grab an umbrella on my way out the door. Just because there is rain does not mean that you have to become soaked through to the bones. Just because there is anticipatory grief does not mean that you have to become obsessively focused on it. I battle anticipatory grief because it is a disservice to myself and to my father to give in to it. I cannot spend my precious days with my dad focused on his future death. It pains me now to even write the words “death” and “my dad” in the same sentence. At the same time, it is important to recognize that even this is an example of anticipatory grief. One blog post at a time and one day at a time, I always fight anticipatory grief.

…But Also Enjoy The Time You Have

Although I refuse to sink into anticipatory grief, it does not mean that it is inherently a bad thing. I believe that most things are not solely good or bad. It is a reflection of the love I have for my dad and the bond that we have fostered together for twenty-one years. Most things are tools that we can utilize to create something good with some time, effort, and love. Anticipatory grief whispers to you that it is easier to shut down than open yourself up to that pain. I refuse to listen to those whispers. I embrace every opportunity I can to see my dad, whether that is at YPO/YNG events or (another) Nothing More concert or even just calling him about the latest news story. It is a reminder (nevertheless a painful one) that I need to soak up all the time I have left with my dad. There will be a time in the future when I will not have my dad to text any job application questions or ask for advice about a difficult friendship. There will be a time when I cannot get a BBQ dinner with him. There will be a time when I will have to say goodbye one last time. There will be a time when our current experiences become past memories. However, I have to remind myself that we are not there yet. The future is a hard concept because we both have control over it and have no control over it at all. I think that these emotions are amplified by illness and disease. Right now, all I can control is whether or not I invest in my relationship with my dad.

P.S. If you want to hear more about the illusion of control, you should check out one of my past blog posts that is precisely on this topic!

The Benefit of Working Towards a Cure in a Community

 I recently went to John Green’s author event here in Saint Louis, and he said something that will stick with me forever. He said, “Isn’t it fun that we get to do this hard work together?”. I instantly thought about the work that my family had done and continues to do for the National MS Society. It can be so easy to forget that the work we do does not happen in a vacuum. We can forget that there are people fighting alongside us. We can forget that we are stronger together. We can forget the peace that can come from mutual understanding. Until I got heavily involved in the Gateway Chapter of the NMSS, I had never met someone else who had fully understood my dad’s diagnosis. There is something powerful about being surrounded by people who are as passionate and dedicated about finding a cure as you are. When you learn about a diagnosis like MS, there is so much pain there, both visible and invisible. I try to be strong in public about my dad’s MS diagnosis, and some days, I am better at hiding my fear and pain. It feels comforting knowing that there are people out there who can not only sympathize with my pain but also empathize with it. Pain can make you strong, and sharing pain in a healthy and productive way can make you and others around you strong, too. My dad’s diagnosis has brought me an amazing community that supports my family and me through the good and the bad. And, of course, we have fun together!

The Importance of Putting Health First

During orientation for my new job, we did a value assessment where we listed our top five values. I was the only person who put “health” in their top five values. Because my father has MS and my mother is the nurse practitioner who first diagnosed him with MS,  my family has a strong commitment to health. One of the very first habits I formed in my young adulthood was taking a Vitamin D pill every single day. Research suggests that people who have a Vitamin D deficiency are at a higher risk of developing multiple sclerosis (especially since Vitamin D plays a vital role in the body’s immune system – the very system that MS takes root in). While it is something very small, it reflects a larger theme in my family. Every healthy habit I have built has stemmed from watching my dad become the healthiest version of himself. My dad is an ultramarathoner who is extremely physically fit. You would not attach the words “sick” to my dad if you saw him. My dad has always been transparent with me about his MS, his treatment, and his progression. It is a level of trust that we have built up through the years, and I have even accompanied him to infusions. I believe that it is important to have these conversations with your loved ones because people will always assume the worst-case scenario if you give them no information. I am entirely grateful for the honest conversations my dad and I have had about health because it has led both of us to better lives.  

This Diagnosis Does Not Define You (or Your Family)

I want to quote my dad right because I think he puts it best: “I am a (doting, loving) father. I am a (faithful, nightly cuddling, giddy) husband. I am an (intensely loyal) friend. I am an entrepreneur. I am a (math and computer) geek. I am a mentor and a mentee. I am an ultra marathoner. Oh, and I have multiple sclerosis”. My dad has never let his MS diagnosis define his life. It is a part of his life and a part of our lives as his family. However, that is not where our stories end. In many ways, it was the beginning. Yes, I am the daughter of someone with MS, and I dedicate a lot of my time to finding a cure and instilling confidence in people with MS now. At the same time, I am so much more than that. There is a reason I always say that I am “the daughter of someone with MS” because the important part of that statement is not the MS. Just like my dad is a father first, I am a daughter first and foremost. It can be hard not to let an MS diagnosis (your own or a loved one’s) define who you are at your core. Your life did not magically disappear because of the diagnosis. There will always be a “before” and an “after” version of myself because my “after” version has been changed by my dad’s diagnosis. However, I was not completely altered. I am still a loving daughter. I am still a dedicated advocate for better health care. I am still a passionate writer. Now, there are just extra layers added to those titles. Also, I like this “after” version of myself. She has a zest for life, a fight in her that was amplified by my dad’s diagnosis. I am still that girl I was before, but now, I have a drive that was not present before. She is ready for whatever comes her way. 

Conclusion

When I first found out about my dad’s diagnosis, the month of March was not a happy month for me. It was just another reminder of my dad’s illness and his mortality. Now, in 2025, the month of March is not a time of sadness but a time of hope. A diagnosis like MS can be so isolating for both the one who received the diagnosis and their family members. MS Awareness Month reminds me that I am not alone, that there are other daughters out there who have a parent with MS and who are also constantly coming to terms with their parent’s illness. With MS, hope must be a key aspect. I have hope that there is a cure to this disease or else I would not be doing work with the National MS Society. I have to have hope that MS will be an illness of the past. I have to have hope that my dad will be able to walk me down the aisle at my wedding. Hope is what helps me come to terms with my dad’s MS. This March has felt so good because I have hope. My wish that this blog post gives you hope and helps you rethink of month of March, too. 

If anyone has a connection to MS, I am always here to chat. Remember, that you do not have to process (and reprocess) on your own!