The Legacy My Chronically Ill Mother Left for Her Sick Daughter

This May marked the fourth year of Mother’s Day celebrations without my mom, and the second year of remembrance as a daughter who struggles with a chronic illness of her own. I was 17 when my mom’s long and difficult journey with disease finally came to an end. She had been battling liver and lung disease for decades, but in regards to her difficult health condition, most people who met her were none the wiser.

Whenever I reminisce about my mom’s boundless efforts to care for me when I was younger, such as volunteering to help out with my extracurricular activities, I am reminded of the fact that not all chronic illnesses are visible. There were times when she did have to back out of previous commitments due to her chronic fatigue, which caused some to question her integrity and work ethic.

 

I admit that I too am guilty of not being understanding of my mom’s condition when I was younger – I was often impatient and frustrated with her when she couldn’t come to events when the mothers of my peers were all in attendance.

Yes…I’m not proud to admit I was quite oblivious to her incredible inner strength until her health really began to take a turn for the worse. She became bedridden during the last couple years of her life, becoming unable to perform any daily living activities such as bathing, dressing and eventually even feeding, by herself, which prompted the need for caregivers, nurses, my dad and myself to help care for her.

Mom couldn’t walk or even do something that sounds as simple as turning over in bed independently. I couldn’t even begin to imagine what it must have felt like to be unable to do the most basic things that nearly every human takes for granted. It was during this time that I recognized and truly began to marvel in awe at the amount of grace, patience and perseverance she demonstrated despite her severe physical debilitation. She passed away just 13 days before Christmas in 2013.

I never would have imagined that, just two years and a week later, I would be rushed to the E.R. and diagnosed with catastrophic full-body paralysis in the form of transverse myelitis.

It was during this time, especially during the first couple weeks when I couldn’t sit up on my own in the hospital bed, had no mobility or feeling below my waist and could barely lift and control my hands enough to feed myself, that I really wished I could personally thank my mom for all the lessons her experience with catastrophic illness has taught me.

Her attitude taught me how to focus on the positive blessings in my life. Of course, this didn’t mean I couldn’t mourn and grieve over the loss of my mobility. She always encouraged me to be honest and sincere with myself in regards to my feelings – to allow myself to feel joy, frustration, sadness, apathy and everything else in between. Though I can say with certainty, at least when it comes to my own individual experience, that I have been able to keep persevering by focusing my attitude on hope, positivity, patience and kindness, even when it has felt like all my dreams and everything I had ever known before this illness were all slipping away.

There are so many lessons I took from my mom and tried to incorporate into my life following her death…but I never gained a true understanding for the kind of lifestyle and attitude she tried to live until I began experiencing a similar situation with my own poor health and mobility. I really began cherishing each aspect of life, especially the physical ability that was once taken for granted, as my body made, and continues to make, a slow recovery. I developed much greater patience for myself and for others as I continued to grow in the ability to empathize and be compassionate towards all individuals who are going through struggles, both big and small, of their own.

Above all else, my mom taught me how to have faith and hope – to remember that all the events in our lives, even the most painful ones, serve a purpose when I continue to have faith in God. Her legacy inspired me to really take charge of my own spiritual faith in the years following her passing. If it weren’t for my personal faith in God, I would never have been able to achieve such an incredible sense of peace despite the seeming chaos that has been my life since this disease struck.

My experience with transverse myelitis, along with my mom’s influence, continues to fuel the fire I have to never stop advocating for human rights, peace and equity for all people, regardless of their background. While my studies and activities have been on major hiatus during my initial recovery period all throughout the past year and a half, I am slowly returning to the college courses and activities I once loved before my diagnosis.

Each day is a battle. Some are worse than others. Dealing with chronic pain of the nerves and back makes each step painful, not to mention the fatigue that comes along with mentally pushing my way through the physical difficulties. There are so many times I wish my mom could physically be here with me, and it hurts to know I’ll be going through life milestones with this illness without her. But, I remind myself of how strong my mom was for her family and for others. If she could do it, if she never gave up and kept living her life to the fullest up to the very end, then I can do it too!

Thank you mom for everything. You’ve left an incredible legacy for me, and I know you continue to watch over me from above. I wish you, in this month of May, a very Happy Mother’s Day.

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