Thanks for joining me for my Thankful Thursdays series running every Thursday until Thanksgiving day 2016!
In an effort to post more consistently and focus on the positive aspects surrounding my chronically ill life, each week I’m sharing personal stories of gratitude in relation to my chronically ill journey.
Volume I focused on the blessing my partner is in my life. Volume II highlighted the good gained from my career as a R.N. in relation to managing my chronic illnesses. This week’s volume focuses on lessons I learned growing up with a chronically ill mom, or as I like to call her, My Mother, the Chronic Illness MVP.
When I told Mom I was in including her in this series and the title of the post she laughed.
She said she never thought of herself as chronically ill, really.
To this statement I giggled but understood where she was coming from. Even with all my own abnormal health problems, I never considered myself chronically ill until I was undeniably disabled by Ehlers-Danlos Syndrome and POTS. My symptoms started decades prior to the finale diagnosis.
Nothing out of the ordinary as these symptoms were much like those my mother, maternal grandmother, aunts and cousins experienced. Innately, we all consider health troubles commonplace obstacles in life because we didn’t know any better.
If anything, we are an adaptable bunch, maybe to a fault but most importantly we always persevere.
My mom lives with multiple chronic illnesses, many related to her underlying yet undiagnosed Ehlers-Danlos Syndrome. My mother’s case is a great example of many EDS cases, chronically undiagnosed but meeting all the major and minor EDS criteria (And then some).
Sick as she is and almost always was, my mom never let her difficulties define who she was nor stop her from trying to accomplishing her life’s goals. Again, my mom is adaptable to a fault yet still epitomizes living a quality life cognizant of but not controlled by her chronic disease(s).
For this example, I am grateful. Even in the pain dissociation my linage subscribes unto, the skill of survival passed down helps me find strength within my weaknesses whilst balancing life harmoniously around my limitations. Regardless of life’s challenges, my drive towards creative altruism remains unwavering. Learning to set limits on when to impede upon one’s own limitations is a grand art of survival.
Always motivated, mom completes worthy endeavors of self exploration, often giving of herself unto the service of others as a second nature. She lives with chronic pain, fatigue, mobility impairments and much more adding up to all that is a Medical Zebra case.
My mom is a survivor and thriver within the chronic disease experience.
Same applies to all the woman on my maternal side of my family tree. My aunts are chronically ill with the telltale idiopathic diagnoses and long histories of health problems, often unexplained and never fully resolved. Failed surgeries and chronic everything paint the medical histories on this side of my family tree most extensively.
When I talk about my medical zebra family, my memory travels back to childhood with one aunt showing me how she could bend her double jointed finger and flip her eyelid followed by another memory shortly thereafter of her needing a neck brace for several months. Then another flashback of my other aunt writhing in pain for two weeks once a month until her hysterectomy. Yet another recall of an aunt often working herself to death only to end up in the hospital many times with weird flares up of disease. These are just examples. There was so much more over the years!
Once after rattling off my known family medical history to my doctor, he said next time I choose my parents I needed to pick better ones because my genetics are not doing me any favors.
I recently received a genetic data analysis showing multiple genetic mutations linking my difficult medical problems to heredity. The doctor was right, genetics play a large role in my disease processes.
The idea this rare condition is responsible for the multiple health issues we all experienced is frightening considering I am the only one in the last two generations to receive official diagnosis! My mother never remembers a time without physical pain. When I think about my own EDS life, I feel the same. Always assuming pain as a right of passage, each lady pictured above lives with an individual degree of disability but also a great deal of personal power to achieve no matter what challenges present.
My first episode of restless legs was at six-years-old. I recall my mother saying “Those are just growing pains. Everybody gets them.”
For years to come we would miss the signs pointing towards an EDS diagnosis.
My weird, whack-a-mole symptoms, and sudden acute health crisis eventually superseded the normal standard of health problems expected in our family when I ran into numerous GI problems and difficulty maintaining my weight episodically. At 27-years old I almost died due to a surgical complication and subsequent problems but it would still take nearly another ten years to understand why this happened.
This sad experience of cruddy genetics across my family lineage is one I find most difficult to understand of all my experiences but the believer in me yearns to make something greater of suffering we live to deny.
Just as much as this circumstance carries a burden, there are just as many things I grasp ahold of and find gratitude for. It would be easy to curse the universe for all this disparity and sometimes I do! At the same time, I see the advantage of growing up with a chronically ill mom as I enter into the home stretch before my fortieth birthday, disabled by my mutant genetics.
What I pull from this experience is coming from a long line of survivors persevering notwithstanding unfortunate circumstance makes me stronger still.
My momma, the mother of seven other children, is one such survivor.
She taught me, by example, how grace survives under fire.
Growing up, I remember my mother being one of the supermoms for awhile. She was constantly busy whether it be with cleaning, organizing and rearranging the house or pursuing success in one of her many special interests and passions. She was particular about how things should be done because there is way to do things. She owned an array of collections often causing her more stress than enjoyment. The mother I knew possessed endless streams of energy from the time I first remember the smell of Pinesol whilst she cleaned house to sometime after my tenth birthday,
I remember noticing how often mom napped. I watched her put aside her own needs time after time to attend to the needs of others. I watched her smile and say she was fine when I knew she just spent the last three days in bed and was anything but fine.
Mom always made it all better when things went out of control in my life. No matter what the situation calls for, my mom will do everything within her power to be there for me whenever I call, time and time again. While we don’t see eye to eye on certain topics, I never feel she loves me any less for having my own opinions or beliefs. She gives love freely without conditions. Without the example of staying strong even in the trials of untoward circumstances, I would have fallen apart long ago.
A few weeks ago, Mom took me to my out of town appointment day because something came up for Seth. Despite my lack of sleep and the nature of the outing, the day was absolutely lovely, full of long, meandering conversations on all the happenings of this thing we call life.
I value these talks with my mother more all the time. I learned things about my mother I never knew. I shared with her my perceptions and the struggles I kept silent about all my life until this last year. We exchanged ideas, stories, and thoughts like old friends. By the end of the day, I was overwhelmed with gratitude for the bond created betwixt my mother and I. It is special, valuable and something I never want to take for granted while it is available to hold closely in this physical reality.
Some twenty years ago I watched my mother’s world crumble when she lost her best friend, my grandmother.
My grandma and mother shared a special bond also. Theirs was the pinnacle of the mother-daughter relationship in my mind. They loved to be together, spent hours talking and came up with some of the most entertaining antics I’ve ever experienced in life.
When my grandmother passed away, I saw apart of my own mother slip away into the grief of the loss. My grandmother was my mother’s serenity in life, without her she became depressed for quite some time but never revealed it openly. Still, just as she always just knows with me, I also just know with her and this time in life was the one that was really hard on my mom.
She would manage strength as needed but it was easy to see she was worn out, sad, and struggling with physcial health issues she would never actually complain about. She pushed herself through the years to raise and educate me, my sister and my 5 brothers. When I became a mother, she pushed herself even more to help me raise my kids as well.
Momma taught me tenacity, unremitting of life’s challenges. She taught me how to love unconditionally and even when feeling unloved. I learned from her grace is patience within the processes of life. Understanding the peaks and troughs comes from my mother’s teachings that I innately possess all the strength needed to succeed life.
The reasons I admire my mom remain countless as her strength in her own chronic illness journey inspires me to continue in mine.
Chronically ill mother and daughter, traveling this journey of life learning from the less desirable experiences and growing into more adaptable, understanding souls all along the way!
This is why my mother is the Chronic Illness MVP:
She is strong even when weak and brave even when scared. She taught me how to piece myself back together when life would break me down. She encouraged me to continue searching for the reasons I was sick even when others believed I was the only cause of my invisible disease. She understands on a level only the way a mother and spoonie could over the years I struggled between illness and wellness. She continues offering her unleveraged support as my disability exceeds her own.
Although on the surface it may seem maladaptive to grow up with a chronically ill mom, learning to function in life despite pain, fatigue and all the other effects of chronic disease, in my experience this gives me hope knowing I go on beyond my diagnoses. Even living life within the limits of these genetic circumstances, my Momma’s example of making it a quality one unabating the effects of chronic disease gives me strength to go after my dreams every day!
Thanks for reading Thankful Thursdays Volume III: My Mother the Chronic Illness MVP! She is such a great lady and an abundant source of gratitude in my life I am fortunately blessed with!
Join me next week for Thankful Thursdays Volume IV: Chronic Motherhood in which I gives thanks for my experience as a chronically ill mother to 3 beautiful kids. Giving thanks for the good things in my life is my way of coping with my disease process while raising awareness on the variety of interpersonal changes occurring within Chronic Illness Life with Ehlers-Danlos Syndrome. While so much surrounding chronic disease and disability is negative,reframing a miserable experience is a great way to transcend the negativity into something beautiful.