Select Page

Hard-won insight from a warrior mom, with a proven track record of getting knocked down. And getting back up.

February 28th is Rare Disease Day, raising imperative awareness among policymakers and the public about rare disease, and its impact on patients’ lives. What is equally important and oftentimes underappreciated, especially by those on the frontlines, is the impact of the gradually accumulating physical and emotional health-related issues the caregiver of a chronically ill child or loved one acquires over time. Left unchecked, this compounding double-whammy of medical maladies can crumble the already precariously built “straw house” existence the caregiver has constructed, with disease-related anything near incessantly adding further upset to any relatively mainstream, life-related curveball. I would know. As the mother of a high-needs globally-disabled, radiantly joyful daughter, and a bright, energetic son, my chronic, routine ignorance to my own needs, and even wants, spiraled my health and well-being to a low that rendered my productivity, a quality I pride most, nearly dormant. But I fought my way back. My journey towards the thriving enigma I am today started with a little help from science.

Dr. Elizabeth Blackburn won the Nobel Prize in Physiology or Medicine in 2009 for discovering the molecular nature of telomeres, and she studies aging and biochemical changes in cells that are related to the diseases of old age. Particularly in monitoring changes in telomeres and telomerase. According to Dr. Blackburn, “Telomeres are the protective caps at the ends of chromosomes in cells. Chromosomes carry the genetic information. Telomeres are buffers. They are like the tips of shoelaces. If you lose the tips, the ends start fraying. Telomerase is an enzyme. In cells, it restores the length of the telomeres when they get worn. As the ends of the chromosomes wear down, the telomerase comes in and builds them back up.” To simplify, the less telomerase produced, the less protection offered to the ends of a chromosome. Without a protective barrier, the chromosome becomes exposed and more vulnerable to breakdown. This sets up physiological changes in the body, which increase risks of the major conditions and diseases of ageing: cardiovascular disease, diabetes, cancer, a weakened immune system and more. Excitingly, they found that this affect is reversible.

Years ago, psychologist Dr. Elissa Epel visited Dr. Blackburn and inquired if stress had any impact on aging, having noticed those who have undergone great stress appear worn, and haggard. This observation was a catalyst towards a scientific study focusing on two groups of mothers: One group with “normal”, healthy children, and the other caring for a chronically ill child. Normal in quotes, a slippery term in the vibrant and diverse world we live in today. The results were sobering, if not surprising: the study published in 2014 established a link between low telermerase and stress-related diseases. They studied measures for cardiovascular disease — bad lipid profiles, obesity, and more. The woman who had been caring for their chronically ill child longer were at greater risk for stress related disease, with markedly lower telermerase levels compared to the group with healthy children.

Another remarkable finding, if not obvious, was that it was not only caregivers of special needs children whose unmitigated stress levels left them “playing with fire” health-wise; simply comparing high stress individuals to lower stressed individuals, of the same demographics, proved those who are high stressed fall in the same category of the women with low, disease-risking telermerase.

I can speak ad nauseum about all I’ve read in connection to self-care and a positive perspective in relation to mental and physical health, but perhaps what may be most poignant is my personal experience. After years of assuring security and comfort for my children first, for the sake of their future, and at every expense of mine, I bore firsthand witness to the gradual destruction of my body and mind, historically impervious to my previous callous disregard of this system, with both unimaginative and highly creative affronts to it in earlier, agreeably wilder, decades. Countless specialists, and a few diagnoses later, my “epiphany”, if you can call it that, towards a healthier me was to do more of what I did when my body did not betray me. The writing is on the wall. It’s almost everywhere if you look for it. When the medications given by my doctors didn’t fix everything, I first used a spoonful of my limited energy towards healthy meal prep. Then, exercise when I had the energy for that. Strength training. Energy slowly came back, symptoms started waning. Deep-breathing (Wim Hoff!) brought clarity, focus, and a peacefulness that helped this neurotic, high-strung, ADHD maniac segway into meditation; both practices a first line of defense now once symptoms start to erupt. I absorbed books on body/mind balance. I grew stronger. And wiser.

With my state of mind and health in a better place, my quality of caregiving, which had receded in tandem with my physical capabilities, began to flourish once again. Since stress begets stress, uprooting myself from toxic, self-destructive negligence will prove more beneficial to my children’s futures, as their future mindset is reflective of their earliest, significant life experiences. The most formidable structures rely on their support beams. Those beams would collapse without routine, necessary attention. That is how the universe works. The most important thing you do today might be to send this to a caring pillar who exists in a high-stress situation, no matter how resilient he, she, or they appear, and leave little room to argue this message: Value yourself first, to protect them later.