Life may have the agency to erode the utopian image we envision for ourselves during our time here on earth but the Creator of it has the willingness to grant those who believe, a spirit of resilience when encountered with the toughest of times. Times such as these may – to others who lack the life experience – seem quite burdensome and oftentimes unmanageable. Whether consciously or not, many of us tend to depreciate the value of that person’s life because we brand them with the social symptoms of being ‘different’, ‘handicapped’, ‘incapable’.
However, one story of love, order and faith has the transformative power to challenge our social perception on those with physical disabilities and – as a community – begin thinking about the language we use when talking to/about our loved ones that are diagnosed with both physical and mental afflictions.
As told by Victoria Moala, a San Mateo high school alum and current student at San Francisco State University, her life experience has set her apart from many of her peers. Her passion to pursue microbiology coupled with her professional goal of undertaking medical research to find a cure for an autoimmune system that she fights everyday, is inspiring.
In this intimate interview, Moala shares her deepest anxieties as well as her unique outlook on life since being diagnosed with multiple sclerosis in 2009 and then being re-diagnosed with neuromyelitis optica (NMO), also known as Devic’s Disease, in 2012.
Could you share a bit on what multiple sclerosis and neuromyelitis optica are?
In healthy individuals, the immune system defends the body from invading pathogens that causes infections or diseases. However, one with an autoimmune disease, such as myself, my body is being attacked by my immune system, specifically my optical nerve (neuromyelitis optica) and my spinal nerve (multiple sclerosis).
Since your first diagnosis in 2009, has your condition changed?
At first, I went from being able to walk, to walking a few steps before I had to sit down and rest, to walking with assistance, to now, using a wheelchair. I get around campus in my power wheelchair. My legs always feel heavy and numb and normally get swollen and red by the end of the day. My progression is due to changes my body went through after giving birth and dealing with the stresses of life. Stress plays a huge factor which can trigger symptoms of MS/NMO. From this, one my daily goals to stay positive (which as we all know, can be a challenge).
Do MS/NMO symptoms have the same impact on those diagnosed or are they each individually different?
MS/NMO affects everyone differently. Sometimes, MS/NMO isn’t apparent to the physical eye. Some common symptoms (ie trouble walking, gait is off balance, partial/complete blindness, weakness) are symptoms that occur on a variety of levels.
As a mother, student and a God-fearing woman, what have been some positive practices that keep you strong and driven?
The gospel has been my blueprint for how I structure my home. I manage my home using the guidelines and principles of the gospel, and it has created a house of order, a house of love and a house of happiness most of the time. I also do my best to be a good wife. I have been so blessed with a Mom that is so intuitive. She knows when to step in and help when I do not have the energy.
Was it difficult having to adapt to this change in your life?
MS/NMO has been a HUGE character building experience for me. When I began seeing changes in my walk, I wouldn’t go out in public for the first six months in fear that I would be ridiculed because I was different. I remember my 3 kids asking me to take them outside to play and I always made up an excuse to stay indoors. But really, I didn’t want to leave the house for my own selfish reasons of feeling embarrassed. It wasn’t until one day, my mom came to me, put her hands on my shoulders, looked me square in the eyes and told me “You are still the same Vika. You are beautiful and strong! Remember, the Lord does not give you anything you cannot handle! Don’t give up! If you do not do it for yourself, do it for your kids!”
That same night, I lay in bed crying my heart out to the Lord, asking him “Why me? Why now?” As I cried, feelings of peace and comfort overcame me, and it was then, that I decided to move forward and that I would be the best me that I could be.
What has MS/NMO taught you that about life?
Having MS/NMO has taught me to prioritize my time wisely. I have learned to cut out the unnecessary things in my life and narrowly focus on the things that are most important. Anything beyond that is unnecessary and therefore neglected, like drama (laughs).
Having this disease has given me the opportunity to teach my kids that it is okay to look different. That even though people look different, God loves everyone and we should do the same. It has allowed me to teach them to be kind to others.
What would you like readers to know after reading your story?
Never feel pity for someone with a disability: I needed to break out of the mentality of feeling sorry for myself and needed to start channeling my energy towards goals that were going to improve who I was. It was not until I decided not feel sorry for myself that I could really begin living again. Many times when I was out in public, people would feel sorry for me which made me feel less of myself. When Tongan people started describing me as ‘faka’ofa’ it conditioned me to think that something was wrong with me, when that just is not the case. We as a community must be encouraging in the words that we use to empower others, including those of us who are fighting battles that we may see (or may not).
Also, educate yourself on people’s illnesses or disabilities! When Polynesian people ask me what is ‘wrong’ with me, they respond with strong assumptions that I need to ‘work out more’ or ‘take Vitamin D pills’ or to ‘stop being lazy and walk’. Not only are these comments very insensitive, but it shows that lack of awareness that much of our community has on physical and mental health disparities.
And then finally, if you are going through a challenging time in your life, never give up! The secret to never giving up lives in the focus, determination, effort and hard work we put into our lives. Without these essential traits, we are taking a huge risk of falling short. Stay focused, stay determined, consistently put in effort and hard work and you will see the Lord move mountains. W