I feel like I’ve lost time while living with multiple sclerosis
MS fractured my sense of time, affecting my ability to stay present
There have been so many times I’ve started something but was unable to finish it. There have been so many things I’ve intended to do, but somehow never followed through on them.
The gate of my mom’s backyard privacy fence is broken. Half of it is missing. A dear friend and neighbor offered to fix it as her next repair project, but sadly, she won’t finish, as she recently died of lung cancer. The gate now serves as a solemn reminder of a lesson I’ve yet to fully grasp when it comes to balancing life with multiple sclerosis (MS): the importance of staying present.
I was diagnosed with relapsing-remitting multiple sclerosis at a young age. There have been many times when I spent all my energy on surviving, and without realizing it, I let life pass me by. I lost time. While my intention has never been to disconnect from loved ones or the present moment, I’ve occasionally let MS take over my life and become all-encompassing.
Because of the difficulties that life with MS presents, I forever feel like I’m falling behind. This might include battling a relapse, fighting to balance MS and an education or career goal with a limited amount of energy, and fearing judgment when it seems like my inabilities outweigh my capabilities. Regardless, there always seems to be a reason to push a little harder to try to get the upper hand on my disease before moving on to the next thing.
Living with a chronic illness can feel like a continual battle. My day-to-day is unknown, and things are constantly changing. I don’t know how my day will turn out ahead of time. I don’t know how I may feel, how much energy I’ll have, how much rest I’ll need, how much pain I’ll be facing, or how my body may physically cooperate (or not). But in chasing structure and trying to account for all the unknowns, I’ve fallen into the trap of treating life like it’s something I can go back to and pick up when things are better — when I’ve reached that goal or destination that’s stolen all of my focus.
But the nature of chronic illness is that it’s ongoing; there isn’t an endpoint. Life continues moving forward, and returning to pick up what you set aside isn’t always possible.
I’ve turned around only to realize that I’ve lost meaningful friendships and chances to celebrate engagements, weddings, birthdays, baby showers, and other hallmark moments. I’ve lost time with loved ones — years I can’t get back. Only when I stopped to set down all the busyness in my life and focus on connections did I realize the amount of time I’ve lost, sometimes without knowing where it all went.
Living in the present
The last time I saw my neighbor, I had hopped into my car to cross more things off my to-do list. She was outside her home and, as usual, talking with someone. As I drove by, she smiled and waved. For the 25-plus years she lived next door, my neighbor was always present and prioritized keeping up with those around her. Her ability to connect with people wasn’t conditional, either; she learned to show up for others despite her circumstances.
My neighbor’s health had been declining over the last couple of years. Her illness took away her ability to ride her motorcycle, walk without pain, and breathe freely. Still, she chose to stay engaged with those around her. I think, on some level, she knew she might not finish my mom’s gate, but she focused her energy on the present, doing what she could while she could.
No one wants to feel sick. No one wants to juggle the daily demands of a chronic illness. But if our lives are determined by our behaviors, and not our intentions, I will strive to be more like my neighbor: being present in the “now,” not focused on the “then.”
Instead of letting my disease concentrate my attention on what life was like when I felt well or how I hope to feel or function in the future, I’ll choose to focus less on calculations, preparations, and appearances and more on nurturing connections. I’ll take action, no matter how small, to stay present in the lives of those around me. Time is too precious to waste.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Carla Canetto
Hi my name's Carla and was diagnosed 14 years ago. I feel exactly like Ahna, have lost many very good friends and time is going by but I'm still stuck and left behind
gulden alp
Thank you Ahna for this insightful article. Having been diagnosed with RRMS 20 years ago, I am just now starting to do like you, trying to live in the moment and staying engaged as much as my health will permit. I also have fur babies :-), which helps me a lot..
Rocío
La escritura, como cualquier escritor ha hecho a lo largo de la Literatura, ayuda, y leer a escritores grandes, también porque dan más fuerza a nuestras piernas que cualquier bici o nadar.
La EM no tiene medicina clara como diabetes u otras enfermedades. ¿Por qué? Ésta es mi pregunta. Una respuesta que no tenemos aunque vayan tantos cohetes al espacio a probar medicamentos, pero el nuestro se resiste a cualquier galaxia. Y ya van 25 años en mi caso, desde que me diagnosticaron, que China, Corea, USA, Rusia, ....... han hecho muchos viajes al Universo, donde seguro estuvo presente la Medicina, pero no EM aún. Y como dice la canción de Chet Baker: :Todos escriben canciones de amor pero no para mí", "They´re writing songs of love, but not for me" . Parece que seremos siempre el payaso triste que no encuentra nunca la alegría que otros tienen. ¿Por qué la Medicina en EM no da con una pastilla para todos los de EM? ¿Tan difícil es una pastilla para nuestra restauración? ¿Cuántos años más vamos a seguir con este martirio consentido? ¿Es el fin monstruoso de terminar con un número de personas con EM que superpueblan este planeta? ¿Sobramos para las grandes potencias?
Maria koutromanos
This article sounds exactly how I feel and have been behaving trying to figure out how to express myself You already did that for me . Thank you for sharing your feelings with us
Lisa Kandel
Some days are better than others. I too am trying to simply get on with living. I am trying to keep moving always. My future goal is to do everything I want to do regardless of how my body feels. That might be easier said than done, but that is the goal.
Stay blessed and thank you for the article.
Kim Ahmed
Wonderful article! I totally feel the same way. Living(fighting) with MS almost 21 years now, just upgraded(downgraded?) to secondary progressive this year, it’s been a constant battle with “used to do’s” and “could’ve dones”. Learning to live todays and in the moments now.
Mike McDonald
Worked on 3 continents for 4 years from MI, Texas, New Mexico OK, CA, Nevada , Utah,Georgia,. MS happened. Traveled to Greece, Italy, Germany, South Korea, Japan. Mexico. Diagnosed in San Antonio. Now retired. Don’t drive. Pycnogenol saved me.
Yvonne Ashman
No truer words were spoken/printed. Unfortunately, I've never had a glowing 'social' life, being an introvert with many hobbies and obsessions most people find odd. I do not (and still do not) enjoy 'normal', so my sphere of connections no longer exists, my last remaining friendships withering as my condition dictated daily activities...and planning for future events - impossible. 'Ask me on the day.' became my credo and motto. At 66, I'm realising that I won't be achieving certain goals despite always pushing forward. Some days I just want to 'give up', as I feel as if I am on a conveyor belt that loops back on itself. The few connections I have left are also my worst, blocking any forward movement deliberately and with intention...just as my past friendships did. So now, I'm living for myself. It sounds selfish...but I just don't have the time, and there's still so much I want to do before I pop off. Not knowing what the future holds healthwise is also frustrating...so I do what I can. Your article hit home hard. I do regret that 'lost time', it is precious...but, though I miss connection, I prefer to go it alone. I'm kind, and listen often, but no longer available to those who would hold me back...
Anikó Nánai
Thank for Ahna writing her life with MS. I have very similar problems to cope with evey moment of my life. We should learn about MS, because we met new promlem to solve some how. For me the biggest difficulty is that I can't do things as proper and as fast than I was healthy. I was a very clever and skilfull girl nnd now I am need more time to do things. The little skillfullnes after every sub makes me a person with complications. People around me think I am a lazy one. It is only my husband understands me but he is very over protective, he wants to do everything and it couses my losing my abilities. He is a very good person and he protekts me! He also gives me help to cope with MS.
Annabelle Carean
Sometimes it is the people around us who find it difficult to stay 'present' with a person living with MS, regardless of how 'present' you are as a person living with this condition. As person living with MS - I have been supportive to others through their various battles when their 'presence' needed support and understanding as a true friend. Value those who show you the same love and support as you do for them. Value those who see that the heart and soul of the person you were before MS is still there.