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?

Posted in Award, Journal, Recognition

Emmy Nominations? Pfft! I Was Nominated for the Disability Blogger Award!

Meme created by Kim at I Tripped Over a Stone

I am so beyond excited!! I’ve been blogging for like, um, 10 minutes, and I’ve already been nominated for a few awards. How freaking cool is that?? I must thank my new friend Kim at I Tripped Over a Stone for so thoughtfully nominating me for The Disability Award! She has truly been amazing with all of the help she has offered to this very grateful, but also, very newbie blogger. Kim accepted her award last month and you can read about that and her responses here.

Being a newbie, I didn’t really know what blog awards were about so I did a little digging. The Disability Blogger Award (or Kim’s terrific spin, The disAbility Award – I like!) was developed by Georgina who blogs at Chronillicles. Georgina is just 18 years old and living life one day at a time with undiagnosed chronic illness. She wanted to start a blog award for those blogging in the particular niche of Disability, Chronic Illness, Mental Illness and Special Needs so that we can celebrate each other specifically. It’s really a terrific idea and I am honored to a be a part of this continuing celebration of my fellow Spoonies, Zebras, and Chronics! You can read more about Georgina’s development of the award here.

The Official Disability Blogger Award Rules Outlined by Award Creator Georgina:

  • Thank your nominator
  • Recognise Georgina from Chronillicles as the creator of this award and link her URL:
  • Use the logo (found below) somewhere in the post
  • Answer your nominator’s questions
  • Write 5-15 of your own questions – they don’t have to be illness related!
  • Nominate 5-15 other disability, chronic illness, mental illness or special needs bloggers
  • Comment on each of your nominees’ latest posts to tell them they have been nominated

The Official Disability Blogger Award Logo by Creator Georgina:

There are three stars at the top in an arc, repeated upside down at the bottom. The stars are disability orange. Underneath the top three stars, there is "Disability" written in disability light blue. Underneath that, in smaller text, "Blogger Award" is written in dark grey. - Disability Blogger Award
Georgina at Chronilliclces

Nominator Kim’s Questions:

Kim came up with some terrific questions and I must admit that one of the reasons I hadn’t immediately accepted this award was that I really had to think about my responses. These weren’t easy questions for me.

1. What were the first symptoms you experienced?

I injured my spine with a simple banana-peel type fall causing severe damage to L4/L5 /S1/C3/C4/C5 and the coccyx. The resulting symptoms were agonizing back and neck pain, ice pick headaches, the inability to sit or stand for more than 10-20 minutes without excruciating pain, incontinence, insomnia, hours-long inexplicable body twitches and maddening nerve sensations in my limbs, and my emotions were all over the place. The entire package was debilitating and completely misdiagnosed for the first three years. The headaches weren’t correctly diagnosed for ten years.

2. Name one good thing that has come out of your chronic illness?

I honestly don’t know how to answer this. I could say that I am more compassionate and understanding. Less judgmental. But I’d like to think that would have been a part of my natural evolution as a woman. This one really stumps me. BUT. I will say this. There are times, albeit brief and oh so fleeting, that I can intuit that life may be lived differently than I had otherwise believed. That perhaps, even though my world has shrunk to such minute parameters, peace, contentment, personal growth and awareness, and solid steps toward enlightenment remain a definite possibility.

3. What is one thing that is believed to be accurate about your condition that isn’t?

That I still live a somewhat normal life. I do not. Nothing about this new life resembles my former life. I no longer drive. I no longer work. I don’t run errands. I rarely leave the house and certainly not two days in a row. Getting out of the house is an enormous feat. If My Guy merely mentions the possibility of more than one stop on the rare occasions that we are out and about, I’m immediately in panic mode that it will be too much. I don’t see many people. Most days, I am struggling to just get through. When people do see me, I am generally well groomed and upbeat. I look perfectly normal. Nothing could be farther from the truth. But that’s because I only allow myself to be seen when I’m okay. When I’m not, the only person who sees me is my husband.

4. What is the worst symptom you deal with?

The ice pick headaches caused by occipital neuralgia are beyond hell. There is simply no word to describe them. I had them for ten years before they were properly diagnosed. Weeks and weeks without reprieve, the feeling of an ice pick through the eyeball. Then they’d vanish for a few days and start up all over again. movement of any kind was agony. Now they are mostly managed with injections. How I did not go mad, living for a decade in that state astonishes me. But, thank God, they are now managed. The worst symptom I NOW deal with is that the body pain never ends. One good day out of 30 is not acceptable.

5. What advice would you give to someone who is newly diagnosed?

Number 1. Keep a journal. Nothing is too insignificant to note. Not if you are searching for the proper treatment or there is a possibility of a misdiagnosis. Number 2. Doctors are not infallible nor is every doctor the right fit for you. If something doesn’t feel right, keep asking questions. If you don’t get answers, you’re in the wrong place. Number 3. You MUST be your best advocate. Research your condition. Research treatment plans. Research doctors. And DO NOT BE A VICTIM. YOU ARE IN CHARGE OF YOUR HEALING! This is not the time to be passive. Stand your ground.

6. What is one thing you miss doing before you were diagnosed?

One thing?! EVERYthing! Using my skills, having a career, being a worthwhile partner, socializing, throwing fabulous dinner parties, traveling, going to the theatre, trying new restaurants, spontaneous sex, managing my household, shopping, driving, HAVING FUN, being excited about the future, making plans, KEEPING plans, earning an income, being a participant instead of an observer.

7. What is the one thing that you do that helps the most with your symptoms?

Without medication, life would be unbearable. Without My Guy, it would be impossible.

8. Do you find the word, “disability,” offensive?

Not at all.

9. Since your illness, what is the most important lesson you have learned about yourself?

I have more strength than I ever thought possible. Few people in my life understand the challenges I face; many others do not. Those who do not would be absolutely shocked if they were able to step into my body and live a week with the pain I experience. Hell, I’m shocked! For years after the accident, I thought I was weak, and that weakness prevented me from healing. That belief and disbelief in myself really brought me to my knees. I no longer believe that. I am a very strong woman and I am proud of that strength.

10. Do you celebrate the 4th of July?

If I can. I love to see fireworks and cookouts were always a big deal on the Fourth in my family. My uncle’s birthday was July 2, my dad’s was on the 3rd and my grandfather’s on the 4th. I have SO many happy memories of those celebrations from my youth. For so many years after the accident, I would stand out on our roof-deck after dark on Independence Day, straining my neck to get a glimpse of fireworks in the distance. As silly as it sounds, I can’t tell you how sad I would feel, every bloody July, missing out once again. It was, for me, a very poignant reminder of the passing of time.

My Questions:

  1. Do you ever struggle getting out of bed in the morning and having to face a new day? If so, how do you manage that?
  2. Does your diet play a significant role in how you feel or manage your condition? If so, what foods are significant? What foods have you had to erase from your diet?
  3. What have you learned about yourself that you hope others with chronic illness will learn?
  4. How do you spend a typical day? What denotes a good day? Will you describe a bad day?
  5. How do you maintain your voice in the world?

My Nominees:

I realize that awards, while exciting and celebratory and as well-intentioned as they may be, may not always be convenient. No matter. I celebrate you. I find joy in your blog. I admire your fortitude. If you are unable to receive, I completely understand. There is no acceptance limitation. The award is yours at any time. Should you, however, accept this mission, I kindly ask that you honor Georgina’s rules listed above. Cheers!

My nominees are a great group of bloggers who regularly post in this niche and if you haven’t stopped by for a visit recently, now is the perfect time to like a post, say a quick hello, or settle in for a longer reading and commenting session.

And the Disability Blogger Awards go to…drum roll please…

Casey at This Bipolar Brat; Craig at Living in a World of Your Own; Michelle Marie at Fibrochic*; Morgan at Brains & Bodies; and Wendy at Picnic with Ants . You rock!

*For some reason I had trouble with the link to Fibrochic.

Posted in Journal, Conversation, Op-Ed

Invisible Illness

Photo by Raphaela Vergud

We must change the conversation about how we manage, understand and accept Invisible Illness and Disabilities. Invisible Illness is any chronic illness or disability that does not necessarily affect the way we look on the outside but may, and most often does, affect every other aspect of our life.  I say change the conversation but bloody hell, is there even one going on? We need to start the conversation!

I have an Invisible Illness. And frankly, I am bloody tired of being Invisible. An ordinary rainy Thursday afternoon nearly twenty years ago. A comic strip banana peel-type fall. Injuries to the spine. And a life changed entirely. Will it be forever?

Most people have no understanding whatsoever of how much energy it takes to manage a chronic illness. My injury should have been fixable. After multiple surgeries and countless therapies, I should have healed and gone on with my life. But that didn’t happen. For some bloody reason that I am still waiting to be enlightened about, my body did not heal. Oh the medical people have given me a list of things I can rattle off at a cocktail party. If I were able to go to a cocktail party, that is. I can spew conditions like Occipital Neuralgia and Fibromyalgia and Chronic Fatigue Syndrome and Advanced Arthritis and Advanced Disc Disease and Spondylosis and Severe Depression and Post Traumatic Stress Disorder and Chronic Myofascial Pain and Neuropathy and Chronic Insomnia and, well, you get the idea. Bottom line, I have severe chronic pain and dear God, it is exhausting to manage. Even when it’s not there. Sound nuts? I agree! But it’s true. Every minute of every day is spent thinking about the bloody pain. You want to just put it out of your mind and get on with it but that’s impossible. For every decision you make will affect that pain, either now or later. Do I go to the grocery store now or tomorrow? If I go now, I won’t be able to shower and wash my hair later and I have that dental appointment tomorrow. If I do laundry today, I probably won’t be able to make that pot of stew I’ve been planning. If I go to Kermit’s birthday party, will I still be able to help my mom with her taxes two days later? Something as simple as deciding what to wear and then putting on makeup, fixing my hair and dressing can feel as though I’ve just run a marathon. I almost never go out of the house two days in a row. Not every day is like this. Some days, I actually feel quite normal. But I am so shell shocked from the previous cycle, that all I do is sit on the couch or read a book. I think, I should get up and do something, but it feels so bloody wonderful to not have my body going crazy and attacking itself, that I just want to sit there and take it all in. The peace. The calm. Will it last 5 minutes, 5 hours, 5 days? Or 5 seconds?

There is so much that I want to include in the Invisible Illness Conversation. I have wanted to say this stuff for a long time but I have never known where to start. Where is the beginning? When I fell? Or long before that? Maybe it’s okay to just start in the middle. And then go back and forth as we go on. I don’t think my story is going to change the way the world thinks. But I do think that all of our stories can.

Perhaps you’d like to join me on this odyssey, this journey, this path to understanding, accepting and learning how to live after the acceptance. Do you have an Invisible Illness? Is it debilitating? But since you’re not without a limb or sitting in a wheelchair or obviously disfigured, no one seems to notice, or understand, or even if they do notice and understand, they forget to remember?

One of my biggest fears about writing all of this down and putting it all out there is to sound like a whiner. That old saw, and I don’t belittle it for it is profound, the one that goes something like, I felt sorry for myself because I had no shoes until I saw the person who had no feet. There is always going to be someone who looks worse off. And maybe they are. In spades. But that doesn’t mean that our pain is any less. That our loss is any lighter. Perhaps the person with no feet has found the way through the pain and has discovered a life that is livable. That’s what this conversation is really all about.

Just because I cannot see your Depression, PTSD, Agoraphobia, Deafness, Multiple Myeloma, Multiple Sclerosis, the list is endless, doesn’t mean that it isn’t just as debilitating as the guy who just survived an automobile accident or the one who is sitting in the chemo chair. Just because the blood isn’t dripping and the arm isn’t crushed and the breathing isn’t labored, and the cancer isn’t taking up residence doesn’t mean that our struggle, our silent struggle, isn’t as debilitating. We don’t have to be at death’s door to be dying. Sound melodramatic? Perhaps. But if you aren’t really living, aren’t you, in essence, kind of dying?

Let’s talk. Will you share your story with me? Please join the conversation.