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 Family, Journal, Conversation, Op-Ed

My Guy: When the Caregiver Gets Sick

Photo by See Jayne Run

Some of you know that I have been struggling for awhile. I have been feeling so lousy and have rarely left my bed. Consequently, I have felt that I had nothing of value to contribute to The Chronic Conversation. Needless to say, that’s not very heartening when I am such a newbie to the Blog World. Today, though, I got fired up and feel the need to write.

My pain journey would have had a very different path were it not for My Guy. He has been with me every step of the way, has patience beyond belief and has never, and I mean never, lost faith in me. I remember a conversation we had years ago when he told me, “I won’t give up on you as long as you don’t give up on yourself.” And I haven’t. I have certainly had really black times but I have always rallied in the end. I have not won the war but I’m still picking my battles.

There are many pertinent aspects of my relationship with my husband and how he has been indispensable to my chronic life. Since this is a blog, I promise not to write a book, so let’s discuss one aspect instead: What Do You Do When Your Caregiver Gets Sick?

In 2016, I traveled across the country to the family farm to spend some time with my parents. They had recently had some remodeling done to the farmhouse and my mom was having trouble with the contractors and bringing the project to a close. My dad, at 86, was in remission from stage IV lung cancer and while doing really well, he was not in a position to be of much help to Mom. And she was exhausted from firstly, nursing my dad back to health the year before and now, dealing with delinquent contractors and an entire house that needed to be put back together. I was in a fairly good place that Spring, physically and mentally; in a remission of sorts. So I flew out to the farm for what would become a few month’s stay. The farm has always been a rejuvenating place for me and I was excited to see everyone. Mom and I found a new contractor, got the work completed and I had a ball helping to redecorate and organize; two of my favorite things.

When I left home, My Guy was experiencing some fatigue and had been for awhile. We discussed seeing a doctor but he thought he was just having trouble sleeping and neither of us thought much more about it. I remember thinking at the time that maybe a break from worrying about me so much would be good for him. A welcome reprieve. I seriously believed that I was contributing to his stress, therefore causing added fatigue.

While I was away, in addition to a mountain of house stuff, I landed up in the hospital with a problematic kidney stone, because, sure, why not add to the load? At the same time, MG told me that his fatigue was getting worse and that he finally decided to see a doctor. Warning bells started to go off in my head. I can literally count the times on my fingers in the 27 years we have been together that MG has been sick. Knowing how long this fatigue had been going on and having him now relent and see a doctor must mean that something was seriously wrong.

Following two visits to the ER and surgical intervention, I was seeing a kidney specialist to wrap things up one day and MG was seeing his physician hundreds of miles away on the same day and ironically at the same time. He called me from the parking lot of his doctor and I answered from the parking lot of mine. The first thing he said to me was, “Don’t worry, I’m not going to die, but I have something called multiple myeloma. They say it’s totally treatable so I don’t think it’s a big deal”

My mom had accompanied me to my appointment that day. I remember sitting in the car across from her in the hot sun while talking with MG and feeling so relieved. I gave Mom the thumbs up, mouthing, “Everything’s okay. They figured it out.”

As soon as MG and I ended the call I looked up multiple myeloma on my phone as none of us had ever heard of it before. Oh. My. God! At first glance, this did not look like a “no big deal” to me. As soon as we returned to the farmhouse, I jumped online and began researching in earnest.

According to The Mayo Clinic, “Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs. Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.”

I begin to panic. In the past 27 years, whenever I was panicked or, let’s be honest, mildly upset, MG was there: solid, strong, unwavering. He is my rock, my touchstone, my reason in the face of insanity. But I was on the farm and he was way back home. I vividly remember sitting cross-legged on the big Civil War-era bedstead in the Red Room, Mom’s laptop to my left, my tablet on my right, feverishly taking notes on a stack of scratch paper from Dad’s desk, the bile rising higher and higher in my throat with each new fact I uncovered. I was bereft. My arms ached to hold MG. I needed him desperately. To comfort him. And to be comforted.

The plan all along had been for MG to drive across country to pick me up from the farm, along with a few antiques I found in some local shops. He would spend some time relaxing and hanging with the family and then we would drive back together with the dogs. Both of my parents and I were concerned about keeping to this plan. Driving from home to the farm was a long 2-day trek but MG loves to drive and couldn’t wait to get on the road. Road trips have always been balm to a smarting wound for him and nothing relaxes MG more than driving for a long period on the open road. The three of us could not dissuade him; he assured us he was not being irresponsible and knew he could handle it. He WANTED to do it: NEEDED to do it. I trusted him. The next day he was on his way.

The time between the parking lot phone call and MG’s departure from home to the farm was a matter of days. So not much time to process. The more I researched, the more frightened I became. I knew that I couldn’t rely on everything I found on the internet and tried to stay within the more reputable sites. But even those provided frightening statistics.

Holy Fucking Hell! I assure you I am selecting my verbiage carefully here. This is the part where the profanity becomes relevant: MM is an incurable and rare form of blood cancer and the survival rates are not high.

“Survival rates are based on comparing people with multiple myeloma to their peers who don’t have cancer. According to the American Cancer Society (ACS), these are the average survival rates by stage:

  • Stage 1: 62 months, which is approximately five years
  • Stage 2: 44 months, which is approximately three to four years
  • Stage 3: 29 months, which is approximately two to three years

It’s important to note that survival rates are calculated from the time treatment begins. The average is the median survival rate. This means that half of the people with multiple myeloma lived longer than the average length for each stage.

These figures include people treated over the past 5 to 25 years. The ACS notes that treatment has improved a great deal during that time period. This means that survival rates will hopefully continue to improve.”

I’m always the researcher in the family so MG tells me to see what I can learn about MM and we can make plans when he arrives. He, of course, knows it’s cancer as he has seen an oncologist but has been given very sketchy info by this man who does not specialize in blood cancers and whose bedside manner leaves a lot to be desired. Additional tests are ordered and MG is told to wait until all of the results are in before he makes any decisions regarding treatment. He will then be contacted by phone. He can take his planned trip and then he can began scheduling the treatment process upon our return. The office knows MG will be out of pocket for the two days he is traveling. MG packs up the dogs and hits the road.

Meanwhile, back on the farm, I am completely overwhelmed by what I am learning. I have a meltdown but make it a short one as adrenaline kicks in and I have work to do. My family is incredible and rallies round: the parents and all the cousins who live nearby. They are my lifeline now. A favorite cousin who is more like a sister is a veterinarian and her science background helps me to break down and understand the medical terminology and treatment protocols. She is there for me round the clock as I jump into the SUV and race the mile and a half to her adjoining farm to discuss some new fact I’ve discerned. And to hold me in her arms when I cry.

I stay up throughout the night researching oncologists in our area and read through hundreds of online resumes, trying to find the right specialist for our needs. As MG is driving, he tells me that he has gotten some information about a particular myeloma specialist from a physician friend who knows someone with the same disease. This someone has been in remission for over 14 years and tells our physician friend that MG should not see anyone but his specialist. The friend will text the name to MG.

I continue my research and end up with three myeloma specialists who stand far out from the rest in the field. But my gut tells me that one of the three is our guy. When MG arrives at the farm, he has the name of the specialist sent via text: it’s the same specialist. I feel that my research has been validated.

Let’s talk now about when My Guy arrives at the farm. Sweet Jesus, he looks horrible. I am in shock that in the few months I have been away, this is what has been happening to MG. He has aged fifteen years and has lost so much weight. There are permanent dark rings around his eyes and he looks haggard and, dear God…fragile. His face is as ashen as his hair and beard have become and I feel deep shame rising up within me that I have been away so long and not at home where I so obviously needed to be. When my sister/cousin sees him, she gives me a shocked look when he leaves the room and says, “My God, you’ve got to get him help now! We cannot wait!”

Now, MG is a warrior. He is a second degree black belt in Kempo karate and at 5’11 and 210 lbs, he is solid. His legs, which I adore, are like tree trunks. Not a sequoia but more elegant, like a Mountain Ash. He is firmly attached to the earth both in his level headedness and his spirit. He is strong, wins most arguments because he can shout louder than I, and can be rather intimidating to others, if crossed.

When he takes his shirt off that night as he undresses for bed, I want to weep. There are deep indentations where his arms meet his shoulders and he has an old man chest, not the brick wall which had last held me just a few short months ago. I have never seen him like this. MG trains regularly and although his extra 5 lb tummy comes and goes, everything about his physique is strong and healthy. But not anymore. A gaunt old man climbs into bed beside me that night and I crawl close, as though he could be snatched from me at any moment.

MG sleeps long and hard that night and in the morning tells us that it’s the best night’s sleep he’s had in months. After breakfast, we move upstairs to the great room with the laptop and all of my notes, as well as all of the paraphernalia that MG was given about myeloma to read up on. We begin comparing notes and then start making calls.

I cut and replaced this next section several times as it is a definite whine but I also think pertinent to the story. As MG was traveling, he missed two calls from the oncologist who diagnosed him but he wanted to wait until he arrived on the farm before returning the calls. He wanted to be with me when he heard the additional test results. Only two days have passed since the first missed call. That very morning as MG is about to contact the oncologist, the oncologist is calling him. MG answers but mobile reception is lousy in most areas of the farmhouse and as MG races to a better spot, the call is dropped. MG calls the office back at the same time the oncologist is leaving a very heated voicemail on MG’s cell.

It makes my blood boil every time I think about this bloody doctor. This physician knew about MG’s travel plans and that he might be difficult to reach within these two days. On the voicemail, he tells MG that he is not interested in working with a patient who obviously isn’t interested in taking care of himself and to find another doctor. When MG explains the missed connections to his nurse, reminds her about his travel, and that he just that minute missed the doctor’s call, she says she understands but that the doctor can no longer take his case. Although this seems entirely irrational to MG, he calmly tells the nurse that he understands but that he needs to speak with the doctor to get his test results. The doctor refuses to speak with him (we can hear him through the bloody phone bloody whispering to his nurse and the nurse is the one left giving MG the results. Who the hell does that? And wait until you hear the results!

Eighty percent of MG’s blood marrow is cancerous, he is going into renal failure, his skull is literally littered with lesions, and his cancer is at Stage III. We feel as though we have each been slapped across the face AND punched in the gut.

We stare at each other stupified. Our mouths literally hanging open. You find out you have cancer, you ‘re in shock, you play phone tag with a medical professional for two days and you’re deemed unworthy of care because said medical professional has been inconvenienced because you missed his calls? Un-fucking-believeable!

Onward! After we remove ourselves from the ceiling and calm down, MG proceeds to call the specialist we had both found. I find this serendipitous and we are both high with anticipation. His office staff is extremely professional and kind but explain that the doctor is booked six months’ out. Do we want to make an appointment? We do. Would we consider another physician in his group? Well, we prefer not but we answer in the affirmative anyway. She is available in 3 months. Okay. We also call the other two specialists I found in my research and make appointments. No one is available for at least 6 weeks. We’re not certain what to do. We’re still trying to process but remain calm. It’s not easy. What the hell do we do now? Do we have 6 weeks? We don’t even know how aggressive this cancer is and there is no one who can tell us.

MG and I are sitting upstairs in the newly added great room. It is a large room, hence the name and there are floor to ceiling windows on three sides. Outside there are scores of mature trees and rolling pastures. It’s a bright sunny day and all is calm and beautiful. You can hear a tractor motor in the distance and a cow calling for her calf. The dogs and cat are frolicking on the lawn and the cat is definitely in charge. We feel as though we are sitting in a luxurious tree house with all of the greenery spilling in through the tall windows. It’s truly a piece of heaven. But in spite of all of this peace and beauty and tranquility, we appear to have fallen deep into hell.

Dan’s cell rings and he picks up. It’s the office of the first specialist. The one who we both found and who was booked 6 months’ out. He will see us if we can be in his office at 7:00 am on Friday. Can we be there? It’s Wednesday afternoon and we’re 1500 miles away. MG says yes and concludes the call.

We’re speechless. Again! All of this has happened within 90 minutes. Relief that we are finally together sorting things out. Anxiety about trying to reach the oncologist. Disbelief followed by Anger at the oncologist’s non-response. Shock as we process the test results. Anticipation as we attempt to see the specialist. Disheartenment as we realize he is booked so far out. Fear as we cannot find anyone to see us right away. Helplessness as we are not certain how to proceed. And now, Excitement and Relief and Dismay and Hope that a miracle may have just happened.

MG paces the room, anticipation growing. “We need to get the dogs and get packed right away! Can you be ready in half an hour?” I look at him and try to focus. “We’re not driving. That’s crazy! We’ll fly there, go to the appointment, fly back and drive home.” MG agrees. “Of course. I’m not thinking straight.”

I jump onto Travelocity and look for flights. The only option for us is to use a regional airport but flights are few. I get us booked on a morning flight but with two layovers, we don’t arrive at our home airport until midnight. By the time we get home and crawl our sorry bums up the stairs to bed, it’s past two in the morning. Our appointment with the specialist is in five hours.

To be continued: When the Patient Becomes the Caregiver

Posted in Journal, Conversation, Op-Ed, Pain Management

Step Away From The Story!

Photo by Annie Spratt

On and off throughout my pain journey I had seen a therapist who greatly helped me (and My Guy) with pain management techniques. If I take nothing away from the long hours we spent together, it is this most important thing: YOUR PAIN IS NOT YOUR STORY. REMOVE YOURSELF FROM THE STORY!

He was so right. It’s the best pain management technique I have in my arsenal. When I begin to lose the juggling game and my rings start falling to the ground (see previous blog Lady of the Rings: Pain Management is an Arduous Juggling Act), I NEED TO STAY OUT OF MY HEAD! If I can do that one thing, I can survive the complete car crash and get my rings back in the air sooner rather than much, much later. Unfortunately, I kinda forgot to remember this recently.

Everything seems to hit me three times harder than the Non-Chronic. I get that cold that everyone has and they’re down for 3 days; I’m down for 9. I have a minor surgical procedure and expected recovery time is 2 weeks; I need 6-8. Bloody frustrating as all hell!

My rings have been falling out of the tapestry for months now following some minor surgery I had in March. Once the surgery was scheduled, I anticipated this happening and tried my best to prepare for and prevent it from occurring.

Prior to surgery, I was doing really well with the juggling act. So, I thought I was well prepared. House (ring) was clean and well organized. This is key because if I need something, I know exactly where it is and I don’t need to expend unnecessary yet precious energy searching for it or crawling over a mess to get to it. I’ve been eating (ring) clean. No overly processed foods. Gluten, sugar and dairy are at a minimum. Plenty of protein and leafy greens. I’m getting daily exercise (ring) and meditation (ring). I’m in a good place with my family (ring) and friends and have made a point of reaching out (ring) to others instead of staying cocooned. I’m sleeping (ring) well and, last but not least, I have the appropriate medications (ring) in line with both surgical doctor and pain management doctor. All of the boxes are checked; all eight rings flying high. I am in a great place in my head and know I have this little surgery down!

Then all freaking hell breaks loose. And most of it, I did to myself. I forgot to Step Away From The Story!

Bad Timing. I was in a great place when I made arrangements for an absolute favorite person of mine to visit for a week just before the surgery. This is a person who is very important to me and we generally keep in regular touch via text about most aspects of our lives. She has kept me going a lot of times when there was no one else to whom I felt I could reach out. (Aside from My Guy. My Guy is a blessed constant.)

Just prior to her arrival, two things started to hit me very hard emotionally. 1. The first anniversary of my father’s death was approaching. 2. I began reading about and hearing about people who had died from multiple myeloma.

I don’t want to veer off course here so quickie backstory. 1. The Big Reminder of my dad’s passing was also shining a bright light on some family drama that is indirectly breaking my heart; therefore the approaching anniversary was not only reminding me of my dad and and our last days together but ridiculous drama that occurred after his death. 2. My Guy has both had a full complete response to treatment of and is in full remission of multiple myeloma, an incurable blood cancer. Now, My Guy can spin circles around me. He is now as healthy and strong as a horse, not a single cancer cell in sight. And we NEVER think that MM will beat him. But for some bloody reason, I’m being hit with deaths from MM everywhere I turn: in my daily news feed, a magazine I randomly pick up, my dentist’s cousin’s wife’s uncle, the damned novel I’m reading!

So now we’re off to the races because I’m in my head. I’ve allowed The Story to take over without even realizing it. The story is that I didn’t do enough for my dad; I am becoming estranged from my family; and I’m going to imminently lose My Guy. NONE OF WHICH IS TRUE! But I’ve already begun the narrative. There’s no turning back now.

Bad decisions. So my company is about to arrive. Party Time! Vacation! I begin to make unwise decisions. The first thing I do is get crap food in the house because you have to have cool and unhealthy snacks during Vacation Party Time. Now I know better than this. I promise you I do. I’m married to a professional chef, for heaven’s sake. And especially since his diagnosis, we eat wisely! But in the past, food had always been my go-to for Comfort, and now, in my weakened emotional state, I’m forgetting my good habits and heading straight for Comfort. I’m doing it on autopilot; these are not conscious decisions.

Favorite Person (FP) has arrived and it’s wonderful! Until it’s not. I’m visualizing a calendar in front of my face and seeing the countdown of days until my dad’s death anniversary. Why this is suddenly a thing with me I have no idea. We were able to prepare as much for his passing as one is able to prepare for such things. It was not a surprise but a natural course of events. But it’s like I’m expecting a massive explosion or something on Anniversary Day. Impending Doom. It’s an actual physical pressure building up inside of my body. And because of this, the Family Drama has become bigger and bigger and bigger in my head and it’s now playing on a constant loop. And then, of course, My Guy could die soon. Let’s not forget that.

Of course, all of this internalized drama, excess emotion, and lousy diet are affecting my pain levels which then is affecting my sleep. I’m not thinking clearly; the fibro-fog is rolling in fast and thick. I’m having difficulty focusing on conversation because I’m fixated on the pain and that’s adding to The Story. I’m getting short and crabby with FP. We had a reasonable activity agenda set prior to her arrival but that’s now become too much for me both physically and mentally but I don’t want to disappoint her. This is her vacation and she’s taken precious time off from work. I lose my temper and say some things I do not at all mean but I’ve hurt her. I apologize profusely and all appears to be well, but I know FP. The damage is done. I hate myself.

Shortly after she leaves, it’s D-Day. Not June 6th. Anniversary of Death Day. The following day is the surgery. I fall apart completely. I’m mourning for my dad like he died yesterday and grieving for my broken family. I’ve just had intrusive and painful surgery. I’m hurting everywhere. And I can’t get FP out of my head. I’m running with The Story again. I’ve let her down. She seems distant. How can I make this up to her? Has irreparable damage been done to our relationship? How soon will it be before My Guy’s cancer returns? What if he doesn’t respond to treatment this time? Will he die? My pain is never going to go away. I hate my life. Can’t I ever just have a freaking good day? It’s going to take me forever to recover from this. How many surgeries do I have to have? I look so old. And on it goes. I’m an official resident of Crazy Town.

Some miracles DO happen. I recovered well from the actual surgery. But after the necessary recuperation period, I couldn’t get back up again. All of my rings had fallen to the floor.

My clean and well organized house had become messy and disorganized. I became re-addicted to carbs, sugar and gluten and was freely eating the old junk trying to find that Comfort I (mistakenly) thought it had once given me. I hadn’t been exercising and when I started again I overdid it and then literally couldn’t move. My spinal pain became worse than it had been in recent years and the sleeplessness went on for weeks. My meds had gotten out of sync, causing strange nerve sensations and uncontrollable body twitches when I would try to rest. The nights were endless and agonizing. Screaming anxiety had taken control and capital D Depression was close on its heels. The black hole started sucking me in and I couldn’t seem to help myself. And, of course, The Story kept expanding and getting juicier with each passing day. I completely forgot the strongest tool in my pain management toolkit! I had become the freaking story!

Now I clearly did most of this to myself. Had I not allowed The Story to take over, I wouldn’t have gotten myself into such a fix. Oh, I would have dropped a few rings, sure. But with the right attitude, I could have easily added them back into the tapestry as soon as I was physically able to do so. Instead, I began the slick slide into The Dark Place.

Thank God I had a few aces up my sleeve! 1. My Guy, ever constant, ever loving, ever patient. (How does the man bloody DO it??) 2. My very smart and compassionate pain management doctor who really listens and never blows me off. Even when I sit in his office in a wet puddle of streaming tears and hiccoughing sobs. 3. Me. I somehow found the strength to stop listening to The Story. Every time I’d think a thread of the narrative, I’d stop myself by saying, NEXT! A hundred, five hundred, one thousand times a day. Over and over and over again! Next! Next! Next! Until The Story slowly began to fade and lose its power over me. Between the three of us, we were able to get me jump-started. Yet again.

Tomorrow I get my house cleaned! Seven more rings to go…

Posted in Quote

Sometimes We Need a Reminder…

My Guy gave me this card many years ago and I have framed it and placed it in our meditation room. Because I find it so heartwrenchingly beautiful, I move it around often. Sometimes it’s on the bookshelves; sometimes the refectory table. Then one day, it’s on the chest or gets moved over to the end table. By moving it, I am constantly seeing it anew and it’s not just blending into the decor. I need to be reminded of this constantly. Life is not only lived in the good days. It’s lived in the bad ones, too. And EVERY day, I am making a transformation into a better and stronger and more beautiful me! I am a butterfly. And so are you.

Posted in Family, Journal, Conversation, Op-Ed

Sweet Captain Riley

Photo by

This is Riley. Yesterday, he traveled on his final journey. He was 15 people years old. Or, if you’re a Silky Terrier, 76 years.

You may wonder what the life and death of my little dog has to do with chronic illness. Nothing. Everything. He was a part of my journey. And now he is gone.

In 2004, we were preparing for what would be the first of several spinal surgeries. My husband, a professional chef and educator, works long hours and we have no family nearby. So we decided that a small dog would be a smart addition to the household. Yes, we had a cat, but Max, though very sweet tempered, definitely had her own agenda. I wanted a buddy, a cuddling pal, a walking partner when the time came. A puppy would be a comfort and good company as I recuperated.

Except that we got far more than we bargained for. I did about six months of research on breeds and finally decided upon the Silky Terrier. These smart, highly trainable, non-shedding dogs could easily adapt to my activity level and were not known to be “yappers”. I was hoping for a sweet puppy whom I could train to do his business outside, socialize well with other dogs and people, heel on a leash, and snuggle and cuddle in front of the television. What I didn’t expect was an old soul. A wise and loving bundle of joy wrapped up in the silkiest and most sweet smelling coat imaginable. He was by my side as I recovered from five spinal surgeries, attached to my hip as I lay in bed. During the long dark years of insomnia, he kept vigil with me throughout the endless nights. When the pain overwhelmed me and all I could do was sob, he’d gently kiss my face to let me know he was there. Just one or two little licks with his sweet soft tongue.

Riley came to live with us when he was 8 weeks old. He was smart and attentive. He calmly told us what he needed when he needed it and then waited patiently for us to provide, confident that we would be there for him. And he was always there for us. He showed us how to be at peace when we had forgotten how. How to accept and just be in the moment. When My Guy and I broke and let all of the physical, emotional, financial, mental, social, and environmental crap that inevitably accompanies chronic illness, finally get to us and the only way we knew at the moment to deal was to rail at each other, Riley, who always wanted to be wherever we were, would calmly stand up and walk out of the room. He didn’t bark or run or cower. In his way, he simply told us to knock it off, calm down, find a better more effective way to communicate and cope. And we did.

Riley was all boy. He was an ideal travel companion. He had a slender, elegant build and a regal stance and even though he only weighed 12 pounds, he was a powerhouse. He had such personality. He feared nothing, he never complained, he accepted whatever the situation happened to be and simply got on with it. If only I could live my life as he did.

In his last years, he lost his sight and could no longer run and play. But he was able to navigate his way through the house and yard well and his temperment never altered. When he became ill, he needed more from us as his days became more difficult but he still never complained. On his last day, he very clearly told us it was time to leave us and he took his last breaths as he lived his life: with calm, peace and dignity.

My arms ache to hold my little guy. To feel his soft coat against my cheek and smell his sweet puppy smell. I pray I don’t forget the lessons he imparted, the love he freely gave, and the peace I always felt in his presence. Sleep well, little one. I am forever grateful for your friendship. But I’m gonna miss you like hell.

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.