Navigating Life with MS without My Mother

By: Stacie Prada

This is my truth. If my mom hadn’t died when she did, she would have been a comfort and helper when I was diagnosed with multiple sclerosis and felt so alone. She would have made a difference in millions of ways, but I’ll focus here on how being motherless relates to my MS. 

I was diagnosed 15 years after my mom died.  In hindsight, I’m certain that following her death I had an MS exacerbation characterized by extreme fatigue, depression, and surprising clumsiness. At the age of 23, I was executrix for her estate. It was a monumental responsibility organizing her funeral, managing her finances and legal affairs, selling her home, and dealing with everything a life suddenly cut short entails. 

I acknowledge my experience wasn’t harder or easier than others, it was just mine and a lot.  The heartbreaking irony was that I wanted and needed her help, yet she was the reason the job needed to be done, and she wasn’t there to comfort me. Regardless of the grief, tears, frustration, and inexperience, the job demanded I rise to the occasion.  

It was a lonely experience then, and I felt similarly isolated and unprepared to deal with my MS diagnosis.  Even though I was married and had friends, family, and colleagues, I felt an immense lack of support and guidance dealing with adjusting to living with MS.  None had MS or experience with any chronic illness. Worse, none were my mother who knew me so well and would have willingly helped without me asking. 

I felt like I was a project manager expected to know what I needed, and know and tell others how they could help. Add my feelings of guilt for being a problem to solve and a potential burden, and I felt a responsibility to reassure others I’d be fine and to comfort them for how my health condition triggered their emotions. Sometimes it was pride that kept me from showing vulnerability and accepting help, and sometimes I clearly saw others were unable to see beyond their own needs to help me with mine. 

My mother would have willingly and confidently stepped in without instruction, and I would have let her. 

In the thirty years since her passing and my fifteen years living with MS, I’ve learned, grown, and adapted more than I ever anticipated.  I’ve learned my desire for complete self-reliance in hopes of not being weak or burdening others shares the downside of cultivating isolation. 

I didn’t set out to find people to fulfill the mothering I lost, and I actively rejected anyone claiming they could. They weren’t people I didn’t need to explain myself to.  They didn’t know my strengths, challenges, and life history, and they weren’t going to love me no matter what.

I’m learning to appreciate people helping as honoring my mom, not replacing her. It takes a lot of relationships to cover the roles my mom provided for me, and I’m heartened when I realize I have many. I’ll notice when people show compassion in the way my mom did. When they describe me to others with pride. When they cheerlead and feel happy about my accomplishments. When they show compassion without pity. When they see my vulnerability and don’t think I’m weak. When they notice, anticipate and assist without me having to ask. When they look out for me and create calm in the chaos. When I’m angry, frustrated, and feeling lost, and they still love me.   

It takes self-awareness and humility to know what I need and be able to ask for help. I aim to find what I need when I need it, and I hope to contribute to others as I can. Sometimes I’m better at it than others, and I’m fine with accepting it as a lifelong effort. 

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and enjoy in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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