Are You There God… It’s Me, Margaret

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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.

 

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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.

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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.

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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???

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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.

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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.

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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…

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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.

~Meg

 

 

  1. Judy Doyle says:

    First. may I say by sharing this you make it possible for more prayers…you will be in mine and YES we both know God is there! Second, I know well about POTS as a friends’ daughter has been diagnosed last year at 14 years old. Horrid for the children to deal with – and yet they do. I also have a granddaughter with EDS – Ehlers Danlos Syndrome. A connective tissue disease….no cure, no monies for research. Rarely diagnosed correctly. Our granddaughter also has Esophageal Thoracic Insufficiency Syndrome (big words) which causes severe scoliosis requiring 2 titanium rods in her back. She has not reached her 4th birthday and has had 11 surgeries…she runs, skips, jumps, rides her bike…she is my hero – and the youngest of 6 children. I know the frustration of no cures….and that is why God is there for us…prayers work and I am praying for a quick recovery that has you bouncing all over the place -in NO pain- quickly and stronger than ever. I so enjoy your posts. Be well, heal quickly, Judy

  2. ChriS s says:

    You amaze me daily meg…

  3. Ken says:

    Wow, Meg, I couldn’t take my eyes off your story. You and your family will be in our prayers for healing, hope, strength and peace. Thanks for sharing it.

  4. Denise says:

    Meg you never cease to amaze me. So beautifully written. You are so strong and will come out of this better than before. Sending love and healing thoughts. XOXO

  5. Denise says:

    Thoughts and prayers are with you Meg. Stay strong.

  6. Laurie says:

    First, let me say that you are brave for writing your story. I have two children who were seemingly always dealing with the medically elusive. My youngest, now 24, reacted violently to all grain products from the time I tried to feed him baby cereal. This was back in a time where the Internet really didn’t exist. I took him to one doctor after another, to children’s hospitals who told me a million different things. I was scared to death to send him to school for fear he would eat something that would kill him. It was a lonely scary battle. But today, gluten free living has gone mainstream. I never envisioned he would be able to go to a restaurant and eat! My point is to keep the faith. Things change.
    My oldest has crohns disease. He was diagnosed at 15. He has has major surgeries as the drugs were not working for him. Now, there are several new treatments in the pipeline. Again….have faith. I have been where you are, I have seen my life seemingly evaporate as I tried desperately to make my children’s life “normal.” I have been the person who had to advocate for them. I have seen the toll it took on my husband who had quad bypass in his early 40s. Again, as someone who can FEEL where you are, I can say hold on. It really IS going to be ok. It’s just not going to be “normal.”
    For the record, those two children that I thought had to grow up way too fadt, who had to face huge hurdles that other kids did not, who I worried about constantly….those two kids were not afraid to move across county to pursue graduate school. They are both astrophysicists. Who knew?? So, although your life may not be normal, I think that you are about to see some miracles and extraordinary things that you never envisioned, come into your life. I know this surgery will work out. I know things will slowly become more manageable. Have faith. It’s going to all work out. 🙂

  7. cindy says:

    Meg-thank you so much for sharing your story so articulately and beautifully as always. You are an angel here on earth and we are continuing our prayers for you especially tomorrow and in the recovering days ahead.

    Much love sweet friend. You are a gift. xo

  8. Kim says:

    e isOh my gosh, my heart was first riveted with the title of your blog … a fond memory of mine as well when I was young, but reading those words again had new meaning, one that can absolutely resonate with so many of your friends. Knowing Shane and hearing what he has endured is unmeasurable, but I loved the way that you used this situation to relate to your son.

    You are full of love Meg.

    You are full of strength.

    And God can hear you … he is there for you.

    You and your family will be in all of our prayers. You got this ‘strong lady’ … and once again you will be an inspiration to so many.

    xox

  9. heaTher says:

    Wonderful piece, Meg, and please know that my prayers are with you. When you’re up to it, I highly recommend you read Are You There, God? It’s Me, Margaret. It’s never too late and if you put yourself in your 11-year old self, you may really enjoy it! Plus, it will be a quick read;) Good wishes on a full, speedy recovery.

  10. Meg Freeman says:

    Meg

    God has you in the palm on his hands. You have a chicken pot pie coming when you get home. Onward & Upward!

    Meg

  11. Pat says:

    Meg, you are one of the strongest woman I know your story as always is beautiful.
    Praying for a speedy recovery & to tell you we will always be here for you.have a good nite & we are so proud of you. Love you Pop & Babci.

  12. Karen says:

    Thinking and praying for you, Meg. Good luck and we’ll await your next update containing a good outcome and all of this will be behind you.

  13. Julie says:

    Meg – thank you for so bravely sharing your story with an open heart. I hope you find strength in knowing you are now not alone in your journey. You and your family are in my prayers.

  14. Karen says:

    Meg,
    It’s Karen, my fiancé Fred{Paramedic and animal whisperer around your barn} and I have attended your many sales this past year..You always go out of your way to greet us, chat, and make us feel like friends entering your home..We just read this post, I with tears in my eyes..We are amazed by your strength, that you are going through so much, and yet still encourage and inspire us with your thoughts and your words..We will be praying for you, and you will be in our thoughts in the coming months..We look forward to seeing your lovely face and receiving one of your warm hugs..You are loved by so many Meg including us..Please take care and keep us informed on your progress..

  15. Della Joy says:

    Your sincere words and gorgeous photos transcended me from the blahs of Winter to the hope of Spring. They humbly changed my got-to-do’s to want-to-do’s and gave me the chance to say, “Thank You God! I CAN do!”
    Thank you, Meg. Keep trusting in God’s plan. He’s there….or as my 4 year-old son once said about the matter, “Yes SHE is!”

  16. Dear Meg,
    Be blessed and know our earthly bodies are temporary. I too have been having similar symptoms, had a mild TBI concussion 2 years ago w/ help from 3 physical therapists. What has worked for my spinal stenosis in my C5, C6 are particular stretching exercises through my main doc, Dr. McDonald at Bryn Mawr Rehab, a DO, 484-596-5451.He had me w/ ocular, vestibular and neck therapists and a formed exercise and stretching regiment. With a small home traction machine that stretches my neck, monthly massage and ongoing exercises, I manage. Yet, I still get oddities such as nerve pain, chills, brain fog, etc. The lyme, the components of various other female problems “menopause” compound the symptoms and confuse diagnosis. You are in my prayers for complete healing, Meg. Cinda Marturano

  17. Meg, thank you for sharing your story with such transparency about the fears and struggles and burden. I’m praying for you today to experience God’s strength and healing hope.

  18. Jeannine says:

    Meg;

    Our family remembers you in prayer today and over the next weeks and are asking for complete healing. Thank you for sharing your story and encouraging us by your strength of will!

    Blessings,

    Jeannine and family

  19. Cricket says:

    Thank you for sharing – I will add you and your family to our
    Prayers. I will hold tight to what you have shared as we travel thru our course changing experience.
    One day at a time with faith, hope, and love????

  20. Nancy says:

    I always look forward to reading your newest blog because you have what it takes to be a great author – and this post only cemented what I’ve always thought. You have such a way with words, and in your telling you always find a way of making us stop and be in the present, and to be ever so grateful for the many blessing we have received, and to not focus on the things that aren’t going the way we want. Thank you for sharing your latest journey, and I join in with the others who are offering prayers on your behalf that your surgery goes well and you are soon fully recovered and pain free, and also that your son will one day in the near future be offered some treatment options for his condition.

  21. Ellie says:

    Meg – We are praying for you and your family and wishing you a successful procedure and speedy recovery. Hugs!!!

  22. Peg Murphy says:

    Hi honey, here at the hospital with Chris and all went well with your surgery! Thank the dear Lord! Dad just said as we finished reading this, you are your mother’s daughter. I say you’re definitely your father’s daughter, your strength & courage are from him! We love you so, guess you can read “Are you there, God, it’s me, Margaret” now! XO Mom & Dad

  23. Bonnie says:

    Beautifully written Meg! Thanks for sharing your story with all of us. It’s truly inspiring. I personally am all to familiar with POTS and its effect on our kids. I hope everyday that they will find a way to help them or by some miracle “grow out” of this condition. Since I met you, I have always thought what an amazing a person that you are and that your beautiful inside and out. Sending you good thoughts and a big hug today. You GOT this!!

  24. Katie says:

    Praying for your quick recovery and some pain relief!

  25. Kendra Brown says:

    Dear Meg,
    Last night, I read and reread your post, put my phone away and thought of you and the strength in which you carry yourself. The resilience of a mom’s spirit. How strength is found even when faced with more challenges. I just reread the post and it makes me think of how fitting the name Lifes Patina is. The greenish hue that adds character to an object, making it appear more beautiful. Your patina is your use of words to tell a story, your eye for seeing the beauty in nature and vintage items and your generosity to open your barn to all who wish fill their homes with your treasures.
    Although my words are not as eloquent, I have no doubt that through your words and actions more attention and research will be given to finding a cure for POTS. I also wish you well today, as you meet with your neurosurgeon. I have no doubt I will see you at the Spring Barn Sale, greeting all with your warm smile

    xo
    Kendra

  26. Valerie says:

    Thank you Meg,

    For reminding us all of what LIFE is all about. For finding a way to put into words what many of us feel so often but are unable to articulate. My heart has been touched and my vision has been opened just a bit wider. Thank you Meg for sharing your journey and more importantly your wisdom. We are all praying for you.

    God Bless You Dear.

  27. Stacey Hoffman says:

    Meg- I am so sorry to hear that you have to face this challenge. I admire your strength in sharing your story and your inspiring others to work through difficulties that they may be facing. My family and I will certainly pray for you and for your son. May God send healing to you both!

    Stacey & Kelly Hoffman

  28. Erin Bruni says:

    Meg… After reading your blog, I must say that you are such an inspiration to all of us! To put your sons problems ahead of your own (which we know are quite serious) says it all! You are quite an extraordinary woman! God will be watching over you, Margaret!
    You are in our prayers’
    Erin Bruni (Kim Morgans Mom)

  29. Donna Homiak says:

    Dear Meg,
    With a tear in my eye, I applaud your bravery and my heart is full of hope and confidence that this too shall pass, and you WILL once again live to the fullest! I truly cannot stop thinking of you which, I believe, is due to the true POWER of all the positive thoughts and energy that surrounds you and your surgery through family and friends. The energy in your story radiates. I pray you will draw from it, especially as you recover. Thanks, too, for the laugh that you went to Chik-fil-A and then went picking when you found out! What great therapy! Love you, Meg! You and your remarkable family are in my thoughts and prayers daily.

  30. Anne Standish says:

    Meg, you are in my thoughts & prayers. Thank you for this incredibly moving and inspirational post.

    With love and healing wishes,
    anne

  31. Jan Hannum says:

    Dear Meg, Gene & I pray that you are doing well & will continue to do so. Will continue to pray for the rest of your family as well. You amaze me! Hope to see you at the Barn Sale, even if it’s just to see how you’re doing. I must tell you how much I cherish the carolers Gene bought for my Christmas gift. They’re still up in our living room.

    Take good care!

    Much love from Jan & Gene Hannum

  32. Kathleen McGarry says:

    Dearest Meg, You have Herculean strength and a divinity that moves beyond words. Your caring presence, compassion and incredible ability to share all that you love and the beauty you see in the world, is a living inspiration. I have never met anyone like you and the day we did meet, I could feel my heart expand from the kindness you offered. I was mesmerized by your energy and the depths you go to for everyone. Reading your words above, regarding all that you have lived through with your son and self, tells me that you are again, acting as as a guide to the thresholds of awareness, by listening and trusting. Through love and through friendship, a heart lives more than one life. A sky of wild gratitude to you and to your family for the willingness to share the deeper truths, for in this way, you become the torch on the path to presence and grace. With love, Kathleen

  33. I am thinking about you my dear friend … what can I do to help? Please tell me and I am there, whatever you need. I truly mean it, what can I do? Your words are eloquent; their meaning powerful, how can we help? You have always been there fore so many, now it is our time to be there fore you.

  34. Dearest Meg

    I am wishing you the best recovery in the world. You are truly a lovely person and thank you for your honest and beautifully written account of what you have been going through. It behoves all of us to love our fellow man/woman in this time of great uncertainty and to come together to bring out the best in our community – you do this by writing your blog and opening your heart. God bless you.

    Sarah

  35. Jennifer says:

    Your am incredible person, Meg, and I love and appreciate you more than you know!

  36. Susan Decker says:

    Meg, thank you for sharing this on Facebook with those of us who aren’t clicking on Life’s Patina regularly. Your blog is a story, and your story should become a book. Maybe that is how your voice will be heard by millions. Keep writing, it is one of your many gifts. And keep finding the blessings as you heal completely. Prayers for you and your family.

  37. Mindy pollikoff says:

    Dear Meg,

    I have often asked myself the question Are you there God? as well. Most often about my beautiful daughter Rachael who has had a life long struggle with anxiety and depression…not to mention being the daughter of Paul Pollikoff.

    When I first got back in touch with you…I was so happy to see the beauty and richness that your life was filled with. Then after a while, I learned about your son’s illness…. and the struggles that he goes through on a daily basis.

    I can’t even imagine what that is like for him and for you and Chris as well. I look at your pictures on fb and see the incredible love that you have created in your family. Though we often feel like the ship can’t run without us…the love you have around you will keep it right on course.

    I will say many prayers for you….as I believe that love and prayers will get you through this.
    And when you are well enough….Rachael and I would love to come out and see your beautiful Life’s Patina and you and Chris and your beautiful family.

    No one gets away unscathed in life……and in the end this will just be a little bit more patina on your beautiful life…….just like the name of your business implys.

    Love…..Mindy

  38. Kristin walton says:

    Meg! — I am sending all good your way for your “journey” ahead– it will be slow and steady but you have an amazing perspective and that will be the map that directs you through. Thank you for sharing your life experience with such gracious and beautiful words. As I always have, I admire your positive yet real outlook on the world and motherhood. I’ll be thinking of you and sending love your way. xxoo!

  39. Bravo to YOU brave sister.