Posted in Journal, Conversation, Op-Ed, Uncategorized

Half Life

My mom taught me how to read before I turned four. I still have my first primer, Fun With Dick and Jayne, pictured here, binding taped, pages curled and torn, a few crayon doodles scattered throughout. These primers are filled with simple sentences for new readers, like See Spot run and See Jane play, etc.

I can remember that I was so excited to be reading a book about a girl named Jane, since we shared the name. I may have spelled mine differently, but they still sounded the same and that made me feel special. One of the games I’d play during this time, was to shout out whatever I was doing: “See Jayne jump, Mom! Daddy, see Jayne hide!” As Mom and I delved deeper into the primers, I was learning new things just as Jane was learning them in the books.

After my fourth birthday, my mom was diagnosed with thyroid cancer. In the mid-1960s, the C Word was more often than not a death sentence and you were ashamed to admit having it. There was a stigma associated with being diagnosed, as though it were contagious. I don’t remember a lot from this time but I do remember hushed voices, closed doors, frantic whispers and the Catholic medals and scapular pinned to Mom’s mattress once she was home from the hospital. Everything was kept dark and I was always told to be quiet. It wasn’t long after this that my anxiety and panic attacks began in earnest. Once Mom recovered, I was completely stricken to have to leave her side but no one seemed to understand why. I didn’t want to play outside unless she left the back door open and I could see her inside the kitchen. Kindergarten was an absolute horror for me because that meant separation from Mom for several hours. The relief I would feel when I would find her waiting for me in the schoolyard after class was palpable.

Now understand that this was never articulated, let alone understood. I didn’t equate my mom possibly dying with not wanting to be away from her or with the beginning of my always present stupefying fear. Nor did anyone else. It’s funny, because over three decades later, after I “broke my back,” when so much of this long-ago -and-dealt-with-anxiety inevitably resurfaced along with other crap I had deeply buried, I seemed to be the only one who ever thought Mom’s life was in danger all those years ago. It was a shock to my family to learn that I had thought she might die at 30 years of age. For the record, she was treated, the cancer never returned, and Mom is a healthy and beautiful soon-to-be 83 year old. But for some reason, as a vulnerable four year old, I picked up on someone else’s fears or overheard an adult conversation not meant for my delicate ears. Somehow I had come to believe that I was going to lose my mom when I was four years old. And I firmly believe this ‘misunderstanding’ was the root of my nearly life-long battle with anxiety and agoraphobia.

Looking back and remembering the little girl I once was, at some point, I must have realized that Mom wasn’t going anywhere because the separation anxiety began to dissipate. But the fears did not. They increased and manifested into illness. Now going to school was The Problem. Every morning, I’d be sick with either a headache or nausea or a stomach ache. I’d have trouble breathing and feel faint or vomit. As soon as Mom told me that I didn’t have to go to school, I’d start to feel better. This was very confusing to a child of 5, 6, 7, 8…I KNEW that I was sick. I had real symptoms but as soon as it was past 8:00 am, when the school bell would ring for attendance and I was safe at home and tucked up warm in bed, the symptoms would start to gradually fade away. Once the evening came and it would be time to prepare for the next school day, the symptoms would appear again. I began to feel like a fraud. I KNEW I wasn’t lying or making things up but why would I always feel better when I no longer needed to go to school? This was a very difficult concept for a little kid to navigate and far too young of an age to begin to doubt oneself. But that’s exactly what I began to do; I thought I must be imagining it all. That something was wrong with my head.

School was now The Place I was absolutely petrified to go. I had a lot of anxiety and panic attacks during these years. The bullying began about 4th grade and lasted throughout high school. Of course this caused even more anxiety and an indelible trauma that lasted long into adulthood.

It took many many years before I was able to understand what I was experiencing. We didn’t use words like anxiety or panic disorder in the 60s, especially in terms of kids. And once I was able to figure things out, I had to learn how to manage it all. But I did it. First with the help of a psychologist and counselor in my freshman year of college who explained that what was happening to me was something called an anxiety or panic attack brought on by bouts of severe agoraphobia. I cannot express how knowing this and finally having an explanation, a diagnosis, validation that I wasn’t crazy, opened up my world. The fears were by no means gone but once I understood them, I could begin to manage them with further therapy. I finally settled into my own skin and liked the woman I was becoming and the life I was living. I had found my life partner, fell in love, married, and we were on a lovely journey together.

Then I broke my back. For years following the injury, I was The Patient. The Defendant. The Victim. The Disabled Wife. It was inevitable to fall into those roles and remain there for years as my medical case was never-ending. First, we fought for over three years for a proper diagnosis. Then, over the next several years we fought through multiple surgeries and endless recoveries. As soon as I’d finally recover mentally, physically and emotionally from one surgery, we would learn that I needed another. And another. And another, And another. And another. We fought to retain our home as our savings dwindled and dried up. We fought for our marriage when our roles as patient and caregiver were simply not enough. We fought to maintain my sanity when I thought I could take no more.

Through it all I firmly believed that if I just did this or if I just solved that, I’d be back to the way I was before. I’d be normal again and MG and I could get our lovely life back. But the years just kept marching on and the disappointments kept piling up. And the doubts from the child returned and manifested onto the adult. Why aren’t I healing? Could I be making this up? Am I really this sick? Is the pain really this bad? Why are people doubting me? If I were just a little stronger. If I could just push through…

Following a very dark period of self doubt, I crawled back into the light (another story for another time). I was finally forced into the realization that I was never going to be the Jayne I was before. There was simply no other recourse except to accept the new Jayne. I may have come to it kicking and screaming but I had finally come to terms with my injury and my limitations and the acceptance that this was the new normal.

But, unfortunately, that’s as far as I got. For the next few years, I was really just existing, living a half life in the shadows with nothing really changing except my age and the lines on my face. When MG was diagnosed with cancer, I was able to don the roles of Caregiver and Protector. And I managed those well, until they were no longer needed.

One of the reasons I began this blog was to find my voice again. And it worked. For a short time. I found some wonderful new friends and realized that I was one of a multitude living with chronic pain and multiple health issues.

But then what?

I remember those learning-to-read-with-Dick-and-Jane-years and I understand that over half of a century has passed by and yet here I am, at what feels like right smack dab back at the beginning! I seem to have come full circle. For what on earth is it that Jayne is supposed to do now? To learn now? Who is she? What is her purpose?

Much of our lives are lived by rote. We get up at a certain time, get dressed and head off to school or work or are busy getting loved ones off to school or work. We have responsibilities. Things to do and places to be. Whether we are cleaning the streets or researching a cure for cancer, we are all pieces of the puzzle. We all have our designated roles to play. But strip us of those roles and we flounder, or at least I have. Once I was no longer The Victim or The Patient or The Caregiver, I didn’t know who I was. I still don’t know. Perhaps The Blogger With Little To Say?

After far too many years, I’m attempting to find my way out of the shadows, out of the half life in which I’ve been living. I’m trying to reinvent myself and to figure out who this new Jayne really is for surely there must be more to her than her pain. I don’t want to wake up to another day and wonder if it’s worthwhile to get out of bed.

I ask myself again. Now what? What shall we See Jayne Do?

Author:

Jayne is a happily married fifty-something who struggles daily with the challenges of living with debilitating pain, fibromyalgia and chronic fatigue / myalgic encephalomyelitis . With a career background in the Private Club industry, she was forced into early retirement following a spinal injury when she was in her thirties. Jayne and her husband, to whom she refers in her writing as My Guy or MG, are the proud parents of a small terrier, avid foodies, culinary entrepreneurs and binge watchers of a little too much Netflix . But all too often, the couch is the only comfy place to be!

13 thoughts on “Half Life

  1. See Jayne Live. Live life, Jayne! Corny, I know, but true. Find the things that give you joy. I dont know your physical limitations, but I’m sure with your excellent brain, you can find something that gives you joy and a sense of fulfillment.

    I became disabled at 30. When I was 40, I was a single (and happy to be free) mother of at 13 yr old daughter, a 19 yr old daughter and a brand new grandson. My work comp case still open, my SSDI case on appeal. A big mess. Life is still a mess but I do my blogging, I read a LOT, and I do little research projects on things I want to learn about. I found my joy and contentment. I live.

    You’ll find yours too. Look how far you’ve already come.🌻💌

    1. Of course, you’re absolutely right, Angie! Sounds so easy yet I seem to have been making it very difficult. I think I’ve been waiting for some big epiphany when all I really needed to do was take one day at a time, do my best each day, and allow the rest to unfold. I think I’m learning that joy can just as easily be found in the simple things as in the big things. Thank you for your kind words, Angie. I’m happy that you have found your way. Sending warm thoughts, Jayne <3

  2. Thank you for sharing your story Jayne. I understand completely about floundering a little while trying to find your new purpose. When I retired from the military, though I worked several different jobs and went back to school to finish my degree, I just felt like I wasn’t doing anything “important.” Surprisingly enough, it was Fibromyalgia that brought me around to my true purpose. I realized sharing my story of learning to thrive with fibromyalgia had the potential to help others avoid the sense of hopelessness I experienced during my couple of years. I feel sure you will also find your “new” purpose. I’d say in the meantime, be kind to yourself and don’t try to rush it. Appreciate yourself for the wonderful person you ARE rather than basing your worth on what you DO. Blessings to you!

    1. Thank you Terri! I so appreciate your kind words. I do believe that there is a pattern and a purpose to our lives and although the pathways are ever changing, when we seriously take a step back and look at all of the intersections, they do make sense. I think I have just not been taking the time lately to step back and really see.

      This “pain pal” community is simply astonishing for the support it provides. I am so grateful to have found you all. I have been particularly enjoying your site, Terri, very much indeed; it’s so inspiring. Your writing is always positive, up-lifting and hopeful. Thank you for taking the time to stop by and visit. I appreciate it and I am holding your words close. Jayne

    1. Thank you Wendi!! I know you are and I appreciate the cheering! How have you been? I have much to catch up on and I have my fingers crossed that you are enjoying more up than down days. You last post, don’t give up, really got to me. Don’t stop writing! Jayne

  3. Jayne, I recommend two books that helped me, by Eckhart Tolle, A new Earth and The Power of Now. And also the insights of Adlerian Psychology or Adlerian networks. We have the Adlerian Network of Ireland and I gained many insights there. Enjoy the process. Le grà, Marie

    1. Cheers, Marie! My husband and I are big Eckhart Tolle fans and have his entire library in print or audio. I found them so difficut to understand when I first picked them up but over time, as I kept reading over and over again, understanding came.

      I am being reminded from the comments here that I do indeed have the tools at my disposal; but I am either forgetting or neglecting to use them. Eckhart Tolle is a prime example. Listening to him makes a difference, as does meditation. I cannot neglect either. And it is a process. That sentence there should be my new mantra!

      I am not familier with The Adlerian Psychology or networks but my next stop is to do some reading about Alfred Adler. Thank you so much for taking the time to stop by and to make these recommendations, Marie. They are much appreciated, Jayne

  4. Oh Jayne, I’m so sorry. I’m glad the stigma around cancer, along with scientific understanding, diagnosis and treatment, have changed since all those years ago. But as a child, knowing your mother was sick and not being able to talk about it and how you were feeling? My heart aches for that little girl. I’m so glad your mum is okay and being a beautiful soon-to-be 83 year old is testament to her strength. Going through your own health challenges, then a loved one’s health battles, must have brought up a lot of deeply entrenched fears and anxieties. The good thing is that the half life can be built upon. Or it can be knocked down and renovated, like a dilapidated house brought back to life with colour and strength and a renewed sense of hope and purpose. You’ve already found this house needs remodelling, and you have the choice of how to do it and when and what you want it to look like  ♥ ♥ ♥ ♥
    Caz xxxxx

    1. Caz, you absolutely amaze me. What a true gift you are! How do you always find just the right words and write them in just the right way so that when I read them I feel as though I’ve stumbled upon a secret box and opening it reveals a new thought I had not before considered but after mulling it over a bit, appears to be a really big game changer? You do that every time, Caz! Your empathy astonishes me. Thank you my dear!

      When I last left you, you were headed to the hospital for some testing and feeling very apprehensive. I’ve read your Mini Me Update but that’s as far as I’ve gotten. If, by any chance, you were feeling some exceptionally warm and loving vibes coming across the pond from the western United States, know with confidence that they were coming from me. You have been on my mind a lot over the past several weeks.

      You are an absolute love, Caz! Cheers! Jayne

  5. I am not sure why this comes to mind, but I wonder about getting the set of the Dick and Jane books and enjoying reading through them at leisure. Perhaps the simple sweet images with lighten your heart and even inspire you or direct you somehow. My mom got the set for my granddaughters (ages 6 and 5) last year (through Vermont Country Store I think) and they love love love them!

    1. Great minds, Patricia, and all that…At your suggestion, I have pulled my battered copy from the shelf and read through the pages, remembering a simpler time. I was very blessed as my mom recently visited for several weeks and it was wonderful to be together and to share some special moments. I’m so surprised that the Dick and Jane books are still in print and being read by the latest generation of new readers. That somehow brings comfort. Thank you so much for stopping by Patricia. Visiting An Unboring Path always warms my heart. Jayne

Leave a Reply