Making space for balance
My MS diagnosis meant creating a new authentic version of myself.
by Lindsay Fiorito
In 2023, eight years after my multiple sclerosis diagnosis, I started a new journey of choosing me. I gave up a career and lifestyle that were meant for a past version of myself as I begin to process and authentically live for the me that I am today.
I now stay at home, but I’m not a stay-at-home mom. I’m a mom who spends most days managing my functional needs, focused on awareness, acceptance and adjustment to my new normal. I feel guilt, sadness and anger for what I wish I was doing instead, but I’m overdue to face my reality.
Life transitions
I hope to honor my needs as I continue to process my first disease activity since my RRMS diagnosis. The relapses came immediately before and after my son’s birth in 2020, and I’ve struggled to balance two major life transitions simultaneously, along with a global pandemic.
My vision of myself as a working mom who juggled it all despite my MS was coming at the expense of my health, well-being and quality of life. I pushed through and neglected myself and quality moments with my family, consumed by confusion, frustration and grief.
Balance was a struggle, and my fatigue, pain and discomfort were debilitating. For over two years, I spent most of my free time recovering from the work week, missing many precious moments with my son, JB, in the first years of his life.
My overdue resignation
Rehabilitation during a medical leave from my corporate marketing job in 2021 allowed me to discover some much-needed relief and comfort. When my leave ended suddenly, I was forced back into a life made for a past version of myself.
Before and after my leave, I attempted different accommodations to balance my needs, even switching companies and job levels, but nothing made enough of a difference. So, my partner, Jesse, and I began to prepare for what felt inevitable: my resignation from a part of my life I had tried so hard to make work.
At the end of 2022, as JB’s second birthday neared, he said to me, “I’m sad…Mommy’s sick” with a look that crushed me. I felt overwhelming regret for how long it had taken me to accept my truth and prioritize what mattered most.
While Mommy being sick will always be part of our life, I now see a choice in the way I live and how I spend my time and energy. Though giving up my income comes with major implications, it wasn’t much of an option, and I’m grateful for Jesse’s support as I balance my guilt with appreciation.
Acceptance over misery
It’s only been a short period, but I’m relieved to have the space to live at my own pace. Eliminating the unnecessary workday stress, schedule constraints and immobility is lifting the deeply draining fog I’ve been living under.
I don’t have it figured out but I’m finding peace and more meaning in my time with and for my family. I now see life as a decision within my control: I can be miserable thinking about who I wish I was or choose to accept my reality and find my joy. I will always have my challenging days, but I’m learning how to make small, noticeable differences that allow for quality.
Most of what I’ve learned is important, with or without MS, and while I wish I’d known it all earlier, the truth is that I’m not sure I would have been ready to make these changes.
A crash course in balance
There’s no such thing as enough time or an easy day, and balance has become critical. With unpredictable mental and physical needs and energy levels, pushing through has become my normal.
On this bumpy journey to meet the new me, I’m trying on a mindset of gratitude as I honor my reality and adjust my expectations to accommodate my wants and needs. I hold space in the same moment for both what is wrong and right, while recognizing that grief and anger can coexist with acceptance and joy.
My heaviness feels lighter as I choose to see both sides. It’s not about discounting my difficulties or a toxically positive mindset, but about honoring the powerful connection between mind and body. We all deserve a chance to experience both the pain and the pleasure and accepting that balance is powerful.
Finding my power and taking control
I’m shifting away from my default of autopilot as I begin to live more consciously and intentionally.
I’ve found ways to control what’s in my power by lightening my mental and physical loads as much as possible and guarding my time and energy as precious resources. I consider my limits as I plan and adjust for everyday tasks, question priorities and ignore unnecessary expectations. I’m creating space for new priorities with longer-term benefits, like building my stamina with slow and steady exercise to support my physical fitness and mental clarity.
While I don’t feel fully in control, I’m finding power in honoring myself for doing my best in the life that I have. I notice the way I treat myself and try to show the same compassion that I would for a friend. As I learn to trust and love myself, I surround myself with moments that support my journey, finding safety and comfort in the slow and simple.
My present moment
I can’t get back the time I missed in my first two years with JB, but it makes me happy to know I’m setting the best example by honoring my own needs and treating myself with respect.
I don’t know what my professional future holds, but that’s a thought for later. For now, I’ll focus on being grateful for the abundance of a new type of quality time that brings me peace and joy.
Lindsay Fiorito lives in Massachusetts with her partner, Jesse, and their son, JB. She appreciates her simple everyday moments like morning stretches, mindful neighborhood walks and family snuggles.
Tags: Fall 2023, living with MS