The title of this post refers back to a book penned by Judy Blume that I was forbidden to read around the age of 13 or 14. It was a huge hit with teenage girls whose pages were not to be perused by one, Margaret Rose Murphy. My parents felt that its content covered way too much taboo material for a girl of my age. They should read some of the books penned today for teenage girls… eee gads. I never did read the forbidden book but I have been drawn to its title numerous times over the last few years. I have uttered those words in a tone akin to when one sarcastically asks, “Seriously?” when they are met with news or situations that are hard to believe. An “are you kidding me moment?!!” Keep that thought in mind as I jump ship here to add an another element or two to the, Are You There God, It’s Me Margaret sentiment.
I believe strongly in each and every human being’s personal narrative, the power of their story. I believe in telling and sharing them for a plethora of reasons. They can be inspirational, comforting, bond inducing, cathartic, empathy producing, explanatory… for both the person owning their personal narrative and for the ones with whom they are sharing with. Many of you know that I have shared portions of my story, and in doing so, it has been all of the above for me. Much of the personal narrative that I have shared fits under the parenting umbrella, that very broad topic which winds its handle tightly around your wrist when you thought you were only holding it in the palm of your hand. There it can never be forgotten, binding the activities of each individualistic child to your thought process and heart strings on a daily basis. How many of us can deny this, no matter the age of the infant, child, child-adolescent, adult-child?
That binding becomes more intensive if the child faces serious struggles, hardships, or illness. We have faced some of these hardships as a family, specifically in our 21 year old son’s battle with Postural Orthostatic Tachycardia, an illness that he was diagnosed with out of the blue at the age of 15. I have written about this battle in the past, touching on its effects on a life which the bearer of this illness finds careening in a much different direction than originally intended. A chronic or terminal illness does that, seemingly hitting you from behind, taking the wind out of your sails that you are already trying to adjust and then readjust, landing you in unchartered waters, in places you have never been before.
I have to confess that I am not one to go to the doctors… for me at least. I spend quite a lot of time at the doctors for my kids but I am under a certain assumption that most moms reading this can relate. We tend to nurture others but not ourselves. That is how we roll. After fifteen years of severe pressure headaches, annoying and interfering vertigo and motion sickness, diagnosed twelve years ago as a damaged inner ear, the past year forced me to stop, go to a doctor and dig more deeply into what was going on. Those sporadic headaches which in the past had lasted for days, were now lasting for weeks and caused me to not be able to bend over or attend my beloved gym classes for the fear that it would literally pop off with the pressure. The happy clapping that my boys like to call it had to stop for it reverberated through my head like a ricochet. I had many other odd symptoms and for a time thought that I had Lyme disease (another chronically underestimated condition) or a constant bout with the flu. After that visit to the doctor revealed nothing out of the ordinary, I went back again in June for the difficulty breathing and swallowing were getting worse, my short term memory was becoming embarrassing and the numbness and waves of chills became more constant. My Doctor ordered a CAT scan and an MRI. If I had ever had doubts that my head was screwed on straight before those tests, I was certain that it was planted firmly between my shoulders afterwards! In August, the tests revealed that I had a Chiari Malformation. “A WHAT?” I asked when I saw my doctor for it sounded more like a dance or the name of some sexy foreign woman … the Key-are-ee part, not the malformation. After explaining to me that it most likely was something that I was born with where the back of my skull is too small forcing my cerebellum to be squeezed down into my spinal column, thus compressing my brain stem, causing all sorts of neurological problems and blocking the flow of cerebellar spinal fluid causing the severe pressure headaches. “You need to see a neurologist or most likely a neurosurgeon,” the doctor stated. Upon visiting the neurosurgeon, she asked if I had recently hit my head or been in a car accident before the symptoms seemed to intensify back in February. I blankly looked at her and said, No, forgetting about my graceful fall on the ice last January when skiing. I cannot even say that it happened shushing down a black diamond after my boys, but walking back to the condo holding my skis. My feet went out from under me causing me to throw the skis in the air to come down back on me, breaking my cell phone that had been in my pocket and knocking my helmeted head, thank goodness it was helmet covered, against the ground. I remembered that incident by the time I saw the next neurosurgeon for a second opinion and he responded that head trauma can cause the symptoms which might not appear for years or ever, to intensify and progress more rapidly. To stop the progression of the nerve damage and to hopefully unblock the CSF fluid, my only option was to undergo a Chiari Decompression surgery, which without going into MORE detail than I already have, involves surgery involving the neck and brain.
Upon traveling home from the Doctor’s office with the news in early September, I found myself heading in the wrong direction on the turnpike. Halfway towards the next exit, I also realized that at that exit where I could turn around and head in the right direction, there was a Chic-fil-A. If I got back on the turnpike while imbibing my favorite fast food meal and sweet tea and continued to head in the wrong direction, I would end up at the next exit which just so happened to be where one of my favorite vintage picking places was located. Bravo! What’s a girl to do when she is uncertain and realizes that she needs to schedule brain surgery? Why enjoy a Chic-fil-A meal and go picking of course!
Heading home with a few bags of treasures is when the major flashback to the book title, Are You There God It’s Me Margaret, occurred. Talking to myself, the whole litany flowed out, “Seriously??? Really??? Are you kidding me??? Don’t I have enough on my plate? How is my family going to manage if I am down for the count, they don’t even know where the replacement light bulbs are or how this ship operates on a daily basis, heck… do they even know where the grocery store is? What about Life’s Patina? I was finally feeling the fruits of my labor taking hold, the momentum was building and we had our Fall Sale coming up in a week and then our Holiday sales and Christmas… my absolute favorite time of the year and the busiest time of the year. And then there was Shane’s appointment at Vanderbilt on January 5th, the one we had been on the waiting list for over a year. I had to be there for ALL of this and the recovery from this type of surgery was intensive… and long. But… I am at the end of my rope in dealing with the physical and mental effects of it all. “Could I hold off on the surgery,” I asked the neurologist? “Yes, if your symptoms do not get worse than they are right now.” Bingo… I will wait and participate in all of the above. I will power through for I was raised by Skip Murphy whose mantra was and still is, “no pain, no gain, if you are not bleeding there is no need to mention it!” It took me 2 months to call and schedule that surgery. Two months of going back and forth, one day, saying to myself it’s not that bad and then in the afternoon of that same day, wham… I was smack dab in the middle of all of it. So that day has come to fruition and later today I head up to New York City for my date with my neurosurgeon bright and early tomorrow am to hopefully provide some relief and stop what gravity naturally does and a bump on the head instigated. Maybe he could call a couple of his friends to join in on the surgery to help with some more of the gravitational issues that are going on???
I seriously struggled with sharing this information and to this level. It has taken me weeks to compose this missive and how to do so and why should I? We all have our battles, our struggles our challenges… why should I divulge this one? I decided to do so to reveal a few of the lessons that I have learned through this experience and will continue to learn and again, to reconfirm the importance I believe each of our personal narratives has in life. You are not a victim of that story… for you are writing it. Yes, things WILL crop up that you have absolutely no control over, things will happen that will turn your world upside down but it is ultimately up to you how you respond. Fear can propel you forward or stop you dead in your tracks. Let it stop you… temporarily, take the time to acknowledge it and then push it to the back of your mind. Let it resurface from time to time but do not let it live in you for it will overtake all that you need to push past that fear.
Why is that we truly need to walk in one’s footsteps to REALLY feel and empathize with what someone else is going through? My physical decline put me in my son Shane’s world, where I could truly feel what his day to day battle was like. Sure, I had witnessed it, but I had not truly FELT it. Now I do and wow, a chronic illness and chronic pain is life altering, it does not go away. It affects every aspect of your life, takes away things that you love to do and changes your course. There are many more bad days than good, when you need to push past your limits to get out of bed. When you have the all too infrequent good day, where the fog is lifted, you open your eyes and the light is so bright, you say to yourself, “Wow, feeling this good is indescribable, but wait, when does the other shoe drop?” It makes you appreciate how your body is truly a miracle and how it works is even more so. The jumble of nerves and muscles, tendons, joints, ligaments, organs and bones are so perfectly orchestrated and ordered that when one thing goes awry, it can throw everything out of kilter. Take the time to stop and listen to that jumble, feed it right, nurture it, and again… listen to it. This past year has bonded me to Shane’s struggles and put me in his world and the world of all who suffer through their days. Positivity becomes hard to live, yet live it you must or you will succumb. We need to create awareness of conditions and illnesses that are lesser known that do not get the funding for research. How odd is it that two members of my family have experience now with those lesser known challenges? When at Vanderbilt, our last hope so to speak, with the medical world for seeking a treatment for Shane, we were told by one of the five researchers there that there is NO new news or developments in why one is stricken with the autonomic dysfunction that Shane has and most importantly in how one treats it. NOTHING… no change in the almost seven years since he was diagnosed! WHY? There is no funding for POTS and it is a complex syndrome that affects its population in varied ways. It is not a buzzword disease. Neither is a Chiari malformation yet both affect large segments of the population who never get appropriate diagnosis or treatment for their condition. I understand, there are SO many obscure illnesses, so many diseases and conditions that we have never heard of but that affect the lives of those who have. I cannot even imagine how the doctors feel who are battling theses conditions or how they determine which ones get prominence and prioritized but I do know that if you never make noise, how are you going to help institute change and bring attention to these conditions? So I am beginning to make noise and will continue to do so.
Lastly, I leave you with my summation of all of this in that life is like a sea faring voyage, you must adjust your sails when the winds blow in a direction that you did not expect. Sometimes you will land on some barren rocky shores, stuck for a awhile on the shoals and not sure how you are going to set sail again. Sometimes, you will be sailing on crystal clear blue waters that ooze of paradise. Adjust those sails, stem those tides of taking you in no direction and set sail on the tides that will take you in the direction of where you really want to head. I am sailing in a bit of a different direction than I had envisioned a year ago and one might ask the question, “Are you afraid?” Hell yes! would be my reply but I would not be human if I did not reply so. I do know that I will come out of this sailing full steam ahead to see you all in the Spring at our first barn sale of 2017. My vision clearer, my mission statement even stronger and my life blessed by the lessons I have learned in my challenges. Onwards and upwards…
Life is full of blessings and trials, the constant is that for all of the Are You There God moments, there will be just as many, if not more… Thank God moments.