You will likely see a lot of posts that talk about the struggles of living with MS and how life altering it is. I am glad that we have a platform now where we are able to show what life with a debilitating autoimmune disease can look like. I am thankful that there are so many more stories out there for me to relate to. Even just 5 years ago, the accounts of everyday life with a disease were so much fewer and far between. I have shared my story of seeking a diagnosis, I’ve shared the trauma I have faced, the fear I combat, the sickness, the doubt, the pain and so much more that millions of us experience. I feel like I do a fair job of sharing both the good and the bad publicly. I try my best to always represent my life with an autoimmune disease in the most realistic and honest way because I know that when I was looking for a person to relate to, I struggled to find someone who displayed what it was that I both wanted to see about the life ahead of me, but also what I needed to see in order to stay motivated.
Multiple Sclerosis, like so many autoimmune diseases, is fucking terrible. There, I said it. We shouldn’t have to live with it. Just like we shouldn’t have to live with so many other atrocities in this world. The point I am making here, today, is that we do have to live with it. So, it makes perfect sense to me to find a way to see the bright side, to acknowledge the silver linings, the sun shining behind the storm clouds. I refuse to allow something I will likely have to spend the rest of my life with be that which only brings me heartache and pain. I say that I look at my MS “Suni Side Up.” Of course that’s a play on words, and specific to me, being that it uses my name. According to my mom, and many others, I have always had a sunny or “Suni” disposition. I chose to call my organization, my movement, and my outlook on my life “Suni Side Up” because I didn’t want this way of thinking to just apply to me when I knew it could help so many people out there. I didn’t want MS to change one of the most fundamental, natural parts of who I am. I also wanted to inspire people to view the hard times they must face in a way that might bring them some comfort and peace. Fear and anger are both so powerful, they can easily overtake our entire outlooks on life if we aren’t careful. We owe it to ourselves to always look for the good in things, identify it and speak its name into existence because too often, the bad wins our attention simply because it makes more noise.
In honor of it being March, which is Multiple Sclerosis Awareness Month, I felt it was important to highlight some of the major positive things that having MS has brought to my life. This isn’t because I am praising MS, or saying that I am so glad I have it. I’m not delusional. When I say that “My MS” did something for me, I am not saying Multiple Sclerosis did it for me. My MS is me taking ownership of the person I am, someone who is functioning and thriving while living in a reality where Multiple Sclerosis is a part of my everyday life. I have a disease that constantly makes itself known to me, it reminds me that I live differently than most people with unpredictable symptoms and hardship that I have little to no control over. If I don’t also take the time to look on the Suni Side, to acknowledge the good as much as, if not more than the bad, to have gratitude for the person I have become and the initiative I have taken, then my disease will have won my life. If I don’t reclaim the things I can, if I don’t find a way to see the good in this experience and learn as much as I can about myself and my perseverance, I am missing the opportunity to be proud of what I am accomplishing every day by waking up and not giving in to what feels easier to do. The fact of the matter is that having MS has made me a better person. It has made me far more appreciative of my life, my health, the movement of my body, the moments of clarity, the air that fills the space around me, silence, peace, and time. It didn’t make my life easier, far from. It did make my very difficult reality something that I’ve come to find more rewarding than I ever would have imagined. Sure, there are millions of other ways I may have come to appreciate those things but my experience of MS just happened to be the catalyst for all of these positive changes to take place. I don’t know if or when I may have ever reached the same conclusions or epiphanies, but I did so because I’ve lived with MS for over a decade.
I keep a running list of the things I am thankful for and the ways that experiencing my life with MS has changed me for the better. This is not a list of why MS is great. This is a list that credits ME. It shows me who I have worked to become and who has evolved from that struggle triumphantly- still me, but a better me. I am someone who moves forward, with dignity, acceptance and the attitude of a person who takes the opportunity to rejoice in the positive rather than dwell for too long on the negative. This list, like me, continues to grow, and sometimes things change. I hope this inspires you to create your own list that you can keep with you and not allow all of the opportunities to make the best of a tough situation pass you by. Rewards are everywhere, don’t forget to reach out and grab them.
1. My MS forced me to take a look at my life and ask myself if this was the way I wanted to show up; if I was doing all that I could to live my best life.
2. My MS was the reason that I did an entire overhaul of the way that I viewed and treated my body. I knew I had to have compassion for the parts of me that I was most ashamed of. Learning to love those was the reason why I could move on from them. If you hate something about yourself, if you want to change something, first you have to learn to love it so that you can help it in a healthy way, one that will build a foundation for you to continue loving yourself- all the parts that make you who you are.
3. My MS was all the permission I needed to stop letting people disturb my peace and wellbeing, or weaponize my sympathy against me.
4. My MS made me appreciate the little things in life, the everyday things that I mostly overlooked and made me never want to take them for granted again.
5. My MS has made me more outspoken about my needs.
6. My MS made me start loving nutrition and it has made me passionate about learning as much as I can about the quality of the food I put into my body.
7. My MS has brought me closer to family members I didn’t think I would have a relationship with in my adult life.
8. My MS has made me a more compassionate and empathetic person. Granted I cry a lot more than I used to, but I am so proud of the fact that I can feel other people’s pain and that I care deeply about what happens to them no matter where they are in the world. Struggle finds us all in different ways, but dealing with struggle unites us in a way that nothing else can.
9. My MS rid me of a lot of the guilt I felt when putting myself first. Whether for my mental health, physical health or my peace, I realized it isn’t selfish to take care of yourself when you know that you need it. It’s selfish to not want someone to do that for themselves.
10. My MS inspired me to start growing as many organic veggies as I could, to eat more colorfully and to create a cookbook of my favorite recipes that I am so proud of.
11. My MS gave me the opportunity to live with a disability so that I could help others doing the same. I found a community that lit my soul on fire and made me know without a doubt that I was in the right place. People with disabilities are the strongest people I know. I learn from them every day and I am inspired by their stories.
12. My MS changed the trajectory I was on professionally and I am so thankful for that. I was of the mentality that I would work and keep my head down to get to where I wanted to be. I was proud to “sacrifice” the next 10-15 years of my life. To relinquish rest, relaxation, self-care, all in the name of what I viewed as success. I realize now that I don’t think that anyone with that mindset knows how to be happy when they finally do have all the time in the world to do so. We are very much a product of the way we view the present. Happiness isn’t a place you arrive to. It’s a feeling you experience exactly where you are. Sacrificing years of my life to “be happy later” is just wasting years of my life I should be happy now. I know I deserve to be.
13. My MS made me a runner. I never thought I would or could become a runner, but the fear of physically deteriorating, and being incapacitated for weeks, sometimes months at a time made me realize it had to be now, so it wouldn’t be never.
14. My MS made me a more appreciative wife. I see all of the ways that Jack shows his love for me by making my life easier. It comes as second nature to him, he is so used to going the extra mile for me. As someone who sometimes doesn’t have the energy for the first mile, I see now more than ever how far that extra mile goes. I don’t ever want him to go a day without knowing how much I love and appreciate all that he does to show me that he is always thinking of me and my needs. I make it a point to tell him at least once a day.
15. My MS made me more understanding and accepting. I feel that I am much more forgiving, something I may have looked at as weakness before is something I know with all my heart takes a ton of strength.
16. My MS made me write again, something I was passionate about my whole life, up until the day my dad died. My blog, which he loved so much and would call me every Sunday night to talk about while I was away at school, stopped. The first time I wrote again publically after he died was when I shared my story about being diagnosed. MS unlocked a core part of who I am, and who I need to be in this world to honor it.
17. My MS made me weary of instant gratification- I am able to take much more time to think things through and know what will benefit me in the long run. It’s becoming easier and easier to make the choice to wait for the right outcome rather than try to control the wrong one.
18. My MS has made me my favorite version of who I am.
Comments