Hell Hath No Fury Like an MCAS POTSie

I haven’t posted in a while because I’ve been a salty mess the past week or so and by salty, I don’t mean in the way most of us POTSies hope for. Those who have MCAS know all too well that anxiety and depression are par for the course when you’re in a flare, and if you have POTS to boot, hide the fucking knives. We can be pure evil bitches to ourselves and others.


Yep. I had to take a big time out from the interwebs before I started taking hostages. As it is, I had a lot of apologizing to do to my husband. Luckily, he’s a very forgiving guy with enough autonomic demons to be supremely empathetic.

Every time this happens, I decide it’s time to escape. Of course, the things I want to escape don’t actually have an exit. So my brain starts searching for any little imperfection that I can change. I feel small, alone and hateful. I feel completely disconnected from my husband and everything that comes out of his mouth, no matter how innocent or innocuous, becomes a judgment about me, my illness or our marriage. This time the poor guy wasn’t listening or responding fast enough for my liking when I was complaining about how hot and itchy my respirator is, so I decided he was like everyone else, he didn’t give a damn about how I felt or what I was going through and I screamed as much at him all the way home from the grocery. This is all absolutely ludicrous and I fully recognize that now, but in the moment and for two full days after, it’s truly what I felt and believed to be true despite a decade of solid evidence to the contrary.

The thing is I went through this for decades without knowing why I had such a Jekyll and Hyde personality or went through periods where I felt completely unable to control my emotions and yet was perfectly level headed and pleasant the rest of the time. I wrecked entire relationships because of my anxiety fueled rages and depression. I remember my mother throwing her hands up and demanding to know where her sweet daughter went when I was a teen. In my mind, I was just fed up with taking all the abuse and wasn’t going to stand for it anymore, but I knew deep down that much of the time I couldn’t really control my behavior anymore than I could control the weather. Part of me enjoyed this new found voice and the response I got to it. Part of me was terrified by it.

In my twenties, I began to question if it was premenstrual dysphoric disorder (PMDD) as these mood swings mostly revolved around my periods. It wasn’t until the last several weeks that I learned that a lot of women with MCAS have a terrible reaction to menstruation. Hormonal fluctuations can be a real bitch in the first place. Add degranulated mast cells and they’re positively explosive. There’s always been a direct correlation between my declining health the severity of my periods and I’m not at all surprised to find that MCAS is probably the reason behind that.  Of course it wasn’t my period alone that was the problem. While I didn’t have my ovaries removed when I had my hysterectomy, I’ve seen vast improvements, but obviously I still struggle.

Now my anxiety and depression rise and fall with flare ups, such as I’m going through this spring. It’s really been the first time that I could definitively say, “this is an MCAS flare” because I finally have everything else under control. I wasn’t aware that I had a big problem with pollen, but looking back, I have had an allergic reaction to several flowers, so it makes sense. And look what surrounds my apartment, so close you can nearly touch it:

Honeysuckle, so so much honeysuckle

I also have big issues with mold and since it’s been a really wet spring here in the Ohio River Valley, I’m sure it’s everywhere. Everything is causing me to flare, from foods I used to be able to eat without an issue to my regular hair products I’ve been using for over a year.

Of all the symptoms from all the conditions I have, the ones I hate the most are my anxiety and depression because they make me someone else. I detest being mostly housebound, but I can handle it and find ways to make my life interesting and worthwhile. I can handle the pain of migraines, frequent subluxations, IC and GI issues, I have for decades. I can even take the nausea, though I will grumble about it an awful lot. But not being myself, being incapable of rational thought and understanding, having a hair trigger and losing that deep well of empathy that’s so integral to who I am, that I still don’t know quite how to deal with, even though it may be one of my oldest symptoms.

I am glad that I’m finally understanding that it’s not my fault and while I still apologize (because that’s simply what any polite person should do), I know I can give myself a break when I do lose it and be super proud every time I manage to win a battle with the anxious mega bitch even if I can’t win the war.



Furbaby Love <3

Today is my little furbaby’s first birthday! Happy Birthday, Loki!! He’s been with us since he was four months old and what a wonderful, wacky, love-filled eight months it’s been. I can hardly describe the countless hours of joy and comfort this little guy has brought me since the moment he walked through my door, but I’ll do my best. In honor of his big day, I put together this collage video, so you can see how much he’s grown.

1186709_226156057540213_668762533_n (2015_08_31 16_32_32 UTC)It’s hard to believe it’s been eight months already. Sometimes it feels like he’s always been here, but it’s really not at all difficult to remember how lonely and sad I was without him. I know I am so very fortunate to have a spouse who has stuck by me through a decade of being mostly housebound, but there’s also a long list of things I’ve lost; family, friends, career, home, the chance at having my own children. I even had to give up my beloved dog when I wasn’t capable of taking her on walks anymore and we didn’t have a yard. I never thought I’d get over the grief and guilt I felt over rehoming Verona, my border collie, but I had to work through that before I could let myself move on and love another animal. It took 2 years before I could even think about her without crying.

As wonderful as my husband is, as much joy as he brings me and as much as he works to love and care for me, he’s just not enough. No one can be your end all and be all.  I have to have more love and companionship in my life than what he can give me, but that doesn’t necessarily have to come from another human. What Loki has brought me is very meaningful and significant to my life. He’s my only companion every day from 12:30 pm to 10:30 pm, sometimes longer, as my husband goes to work and lives his life beyond our home.

That’s where Loki comes in, though he certainly doesn’t take time off when my husband comes home, either. Loki is my comfort when I hurt, often opting to spend nearly the entire day in my lap or by my side on my really bad days, gently purring and chatting to me. On those days, he knows better than to meow at me incessantly as he does on other days.

Loki treats me with a care and respect he doesn’t seem to have for anyone else. He harasses the hell out of my husband when he puts his shoes on, for example, chasing his shoe strings and sinking his claws in so it’s impossible to tie them. Not me. He never interferes with me trying to accomplish something, at least not on my bad days. And when I’m asleep, he never bothers me. I don’t know if he senses just how hard it is for me to sleep or what, but he won’t even come near the bed when I’m asleep, though if we close the door he throws a real fit.

On my good days, he’s always up for a game of blanket mouse or pointer chasing. No matter what I’m doing or how I’m feeling, he’s usually by my side. When we first got him, he wouldn’t allow anyone to pick him up, but now he lets me, if a little grudgingly, for some cat cuddles. He’s in love with my robe and the way it feels and always nurses on it just like a baby kitten when I wear it as he’s done since the day he came into our lives.

Of course life with Loki isn’t always rainbows and sunshine. We thought we were naming him after the trickster god of Norse mythology and a Marvel character, but his name really turned out to be short for loquacious, as he’s the most talkative cat I’ve ever met in my life. His chatter can be a bit much to take at times, especially when I’m riding high on histamines, with headaches, anxiety and noise sensitivity. But I’ve come to realize most of his meowing is about his own anxiety and I try to be patient and reassuring, which usually quiets him down a lot quicker than anything else. Of course he also chats quite a lot when he plays, if he’s hungry, feeling challenged and for a few reasons I have yet to puzzle out. Just check out this video of him playing.

When I got him, I knew I needed a companion, someone to love and care for and who r20171009_165021.jpgeturned that love. I’ve almost always had animals and they are like my children to me, but after having to give up Verona and having had several cats that I just couldn’t seem to build a strong relationship with, I had all but given up. I still don’t feel confident that I could give a dog everything she or he needs, so after three years of loneliness, I decided to give a kitten a try and I sure am glad I did. I think back to how sad and pitiful my life was without Loki and I can hardly believe I let myself suffer like that.


Now that he’s here, my life feels so much more complete. He brings me joy with all his kitty antics and his sweet loving ways. He brings me comfort with his gentle, watchful care. He provides me companionship and lets me know I am never alone. He provides me with a sense of accomplishment, as I am proud of the strong cat he’s become from the emaciated, bedraggled, flea-bitten kitten he was. He truly is my pride and joy and the best little companion animal any Zebra could ask for.

Again, My World Shrinks

I probably shouldn’t be writing this right now. I’m so full of rage I’m apoplectic. I need to get some of this off my chest. I feel like I’m one big raw nerve being used as a hacky-sack by a battalion of porcupines. I feel sorry for the one who makes me burst, because I’m taking him down with me. All over a piddly little part-time job. Failure stings like a mother fucker. Rationally I understand that the circumstances of that failure are beyond my control, but truly, it doesn’t hurt any less. Going in, I knew there was a good chance it wouldn’t work, but still I can’t help but grieve the loss.

I had to quit driving with Uber. What precipitated this decision is the level of brain fog and cognitive impairment I deal with was quite literally putting lives at risk. After multiple very near misses (and being reported for one of my safety issues), I had to finally admit that I should probably quit before I ended up wrapped around a tree. This was on top of whittling away at my schedule until I was only working 4-6 hours a week because the physical and emotional stress was causing too much strain on my health with increased fatigue, new infections and other symptoms. It simply isn’t worth the risk to my health and the public safety.

Part of me is proud for admitting this and hanging up my keys on my own before anything bad happened. I watched my mother deteriorate the same way. She had to be forced to retire from her job, and did things like drive long after she should have while everyone who loved her looked on in horror. I don’t want to be that person.

I was hit with these cognitive problems 30 years younger than my mother was and I’m pacing the confines of my mind like a caged tiger. I wasn’t ready for this 10 years ago and I’m not ready for it now. Queue the renewed grief, the rage, the stages I have already come through and must revisit again after having had a taste of freedom.

Because I can no longer hold my job, the size of my world has shrunk back to 950 square feet. I’m not just losing the weekly interaction with my riders, a renewed sense of purpose, the feeling that I’m contributing to the betterment of my family and paying down my massive medical debt and working toward future goals. I’m losing my car and means of going out into the world at will because we’ll have to sell it. I’m losing a lot of confidence in my abilities and gaining the realization that even the most simple jobs are beyond my abilities. I can’t be trusted, not even by myself and that hurts A LOT.

If I’m being completely honest, I’m also relieved. I was stressed and worried all the time over what I was doing to my health, over the strong possibility of causing an accident and/or getting kicked off of the Uber platform for my many mistakes, over not being able to see well enough in the dark to work nights and over how it might eventually effect my social security. By finally admitting that I was in over my head and slowly drowning, I’m able to go back to concentrating solely on what I should be concentrating on; achieving the best health possible so I can live as comfortable and full a life as possible for as long as I have it. It’s a catch .22; I can’t enjoy relatively stable health when I’m doing too much and exposing myself to constant stress, even if that creates other stressors for me in the long run, even if it sometimes feels like hardly living.

The fact of the matter is I still have a lot of hurdles to address and caring for myself takes every ounce of energy I have. I have to cook all of my food from scratch. I have near weekly medical appointments, daily therapies, exercise and self-care I cannot do without and even things like keeping my pills stocked and organized accounts for hours each week. My cognitive deficits and shaking hands make me painfully slow at everything. I feel like a tortoise in a hare’s world and most of those things were either getting half-assed or completely ignored in exchange for a lousy $100-150 a week.

As I write this, I can feel all the anger starting to release. I can feel the logic and forgiveness taking over as the big picture comes into focus. I think of the money side of things and fear fills my sails, but no amount of money is worth dying for. I think back to where I was before I began working, when I took the time to create everything from scratch and I wasn’t in constant pain with bowel cramping, bloating and diarrhea.  When I had decent energy levels and didn’t suffer constant subluxations or torn tendons and ligaments because I managed every move like a miser and actually took the time to stick to a dedicated exercise routine that strengthened and energized me. These are the things I need to focus on and look forward to achieving again while trying to put this experience behind me.

My attempt at working part-time may have failed, but that doesn’t mean I’m a failure. If that were true, I would be accepting that I am nothing more than my diagnoses. Yes, I am a zebra with the trifecta of comorbid conditions, but that’s not all I am. I am a writer, a poet, an artist, a wife, a friend, an activist, a dreamer, a former teacher. I am a person with value, whether or not you see it or assign a monetary value to it.

When Family Denies Your Pain

It took me a long time to understand why my physical collapse to Ehlers-Danlos Syndrome (EDS) caused an equally emotional one that precipitated a total separation from my biological family. Suddenly, I was every bit as angry with them as if I was back there living in the time when I was still beholden to them. Like I was still somehow that powerless child forced to live in a world determined by someone else. That world very much resembled a modern day version of Cinderella, only there were no Fairy Godmothers to be found. There’s nothing idyllic about this tale.

The primary mode of control used by my parents and one of my siblings is a popular tool used by all abusers called gaslighting. Gaslighting is emotional abuse that aims to make the victim doubt their own perception of reality and memory. Put simply, it’s an expert way of manipulating someone into seeing things your way. Employed regularly and methodically, it strips the abused of all confidence and self-reliance. There are no rules but those the abuser makes from one day to the next and even if you record them, they will find a way to argue their way out of them by point of context. It is a world of quicksand and there is never anyway to win against an expert at the game of gaslighting.

It really comes as no surprise to realize that I was gaslit the whole of my childhood about the state of my health. When I went to my mother about the severity of the pain in my feet and legs after working just a few hours as a teen, I was told everyone’s feet and legs hurt and I just needed to deal with it. My pain was not unique or of any concern. After all, my mother had waited tables in high heels to put food in our mouths and I should be grateful I didn’t have to do that. All of my little accidents and trips were because I was a careless, clumsy kid and why didn’t I just watch what the hell I was doing? Even when I suffered frequent bouts of chronic bronchitis and sinusitis, I was told I was playing it up and making it more than it was and would get yelled at for my uncontrollable coughing. When my periods came accompanied by severe cramping and bleeding, I was being weak and wasting too many pads. I was neither entitled to my pain nor allowed any sympathy for it and I better not get caught belly-aching over it or thinking I could shirk my responsibilities for even a minute.

Those duties began at an early age. My mother worked opposite my school hours the whole of my childhood and I became my own primary caretaker at around age seven, when my oldest sister left. I had the added responsibility of being my brother’s primary caretaker at his birth when I was eleven in addition to caring for the house, helping my mother with the laundry and doing most of the cooking. I was treated not so much as a child, but as an adult, responsible for the functioning of a household along with my schoolwork and often carried the burden of the very adult concerns my mother would litter me with during our sparsely spent time together.

My stepfather was an angry alcoholic law enforcement officer hell bent on controlling my every move when he was at home and drinking our money away and chasing other women when he wasn’t. He wasn’t very good at controlling my mother; no one ever was, and he seemed to delight in taking it out on me. I don’t know why. Perhaps because I most looked like my mom or I reminded him of her some other way. In my early teen years, I began to fight back and he pulled his service weapon on me, finally convincing my mom to leave him for good.

She remarried when I was 16, somehow to someone even worse and my real health problems were only getting started. My first job brought about my first real pain problems. I would stand behind the doughnut filled glass case and smile through the pain of aching feet while serving up the little cream-filled confections, praying for the customers to go away so I could go in back and sit down. It was an easy if boring job, but I hated it because my new step father would drive me there on his motorcycle, whipping around curves at 30 miles over the speed limit and I would get off his bike shaking and terrified, so I opted to find a job within walking distance.

For my seventeenth birthday, they bought me a car and then told me two weeks later I had to pay for it with my tips. I was only allowed to keep my paycheck, which was for $2.01 an hour less the taxes for my tips. I was earning $15 a week for the excruciating hours I spent on my feet. Since my stepfather also determined that it would be a good lesson in economics for me to purchase my own clothing, toiletries, lunches, school supplies, and pay my insurance, I was struggling mightily.

My new stepfather was severely affected by bipolar disorder and had wild mood swings. He also had a terrible cruel streak and a penchant for creative punishment. I believe he was a sociopath. I was so often grounded from the car I was paying for that it might as well have been a paper weight. More than once he destroyed my clothing, cut the cord from my phone or destroyed the furniture in my room as punishment. Once, he broke the window in my car and I suspect he cut my brake line. Most of these things I had to replace on my own. My mother came to fear for my life, but she would not leave him, so she began to call me and tell me not to come home or to flee if I was already there and one of his moods struck.

I began living on the charity of friends, careful not to wear out my welcome for too long at any given place. My first choice was to stay at the Miller’s, with my best friend and his single mom, but she could only take so much of me, so off I would go to stay with the Burmeister’s who had so many kids one more didn’t seem to make that big of a difference, or to crash on the couch under the watchful eyes of my fiancé’s parents. Occasionally, I would find I had no place to stay and would sleep in my car, parked somewhere in my neighborhood where I felt safe enough, but didn’t fear discovery by my stepfather and was still close enough to the gas stations so I could use the bathroom.

During one such period of exile, I got a very bad feeling and decided to drive past the house to check on my mother. It wasn’t my habit to do so and I don’t really know what made me do it. There was a police car in the driveway and the car was gone. I ran into the house and my mother was being interviewed by the police. She told me my step father had forced her and my seven year old brother into the basement, threw lamp oil down the stairs and then threw lit oil lamps down with it in an attempt to set them on fire.

“Are you finally ready to leave?” I asked.

She nodded. I didn’t wait for her to change her mind. I started packing things into my car.

It was January of my senior year of high school. Despite my vagrant status, I had every intention of finishing high school the same way most people do. I’d even managed to make the honor roll a couple of times. Still, when I’d heard that early graduation was an option for people who met the requirements, I had been tempted. It would allow me to work full-time and get set up in a place of my own, if my mother would agree and sign off on it. Still, I was in no rush to terminate my childhood and take on the full responsibility of adulthood, as hard as my life was.

But we didn’t have any place to live, my mom was working 60 miles away and my sister lived 10 minutes from where she worked, so when she offered us a temporary place to stay, my mother took it. I decided to graduate early rather than try to commute 60 miles to school every morning or continue to couch surf. I met the deadline to apply within days and had to take two night classes to fulfill my last requirements before taking my place with the rest of my class in ceremony the following June.

Before I did so, I married the man I had promised to under the pressure of escaping my house. It turned out to be an even trade-off, as unhealthy people aren’t very good at picking healthy mates. He was a master manipulator and sociopath in his own right. Once we married, he wouldn’t hold a job and left me to be the primary earner. I went through a couple of jobs, trying to make as much money as possible and find something that didn’t hurt my feet so much. In the last few months of our marriage, I took a job as a certified nurse’s aide, getting training directly from the home that hired me.

I worked in a unit comprised primarily of Alzheimer’s patients. I adored my patients, who were mostly like children, given their advanced states, stuck in fantasy worlds or so far regressed that speech and normal adult function had long since left them. I cared for them like newborns, changing their diapers, washing and feeding them. It was grueling work, requiring a great deal of strength and energy and every nine hour shift left me exhausted. We had no devices for lifting, though I know some existed. We had one patient who weighed over 350 pounds and one night I was requested to help lift her with another aide who was approximately 5’ 2”to my 5’ 8” and maybe 105 lbs to my nearly 180. Though I lifted properly, physics simply wasn’t on my side, and I felt something give in my back and pain like I’d never felt before. The doctor at Urgent Care told me I’d torn every muscle in both quadrants of my lower back and put me off work for a week with some muscle relaxers and pain killers.

The nursing home refused to believe I had lifted properly and blamed me for the accident. After that, every time I tried to lift a patient, my back would reinjure, so I was forced to leave. I complained about the problem to my GP, but he told me that I simply needed physical therapy and everything would be fine. It was not. I went from job to job trying to find something that would work, but everything aggravated it; standing in one spot for too long, walking too much, lifting anything. I began job hopping to try to escape the never ending pain of a bad back and hurting feet that I’d been told by family and professionals alike to just deal with, because I was too young for there to be any real problem. Who was I to question men with medical degrees when my own parents blew me off.

My time in between jobs was the only time I wasn’t in constant pain, but of course it brought other worries and problems. It put me back in my mother’s home, where there was always much discord. Me, with all my grudges over how she never put me first or protected me from my stepfathers and manipulated and used me so expertly the whole of my life. Her, with her disapproval over how I was leading my adult life, convinced my only problem was my laziness. My little brother, warped and twisted under the tutelage of our stepfather and a mother who allowed him to run wild as a sort of way to make up for it.

I managed to get an office job here and there, but they almost always involved the heavier lifting of office jobs like working in file rooms and I hungered for something easier like data entry, but didn’t have the typing skills to land them. I managed a teller position, but it required standing and I discovered pretty quickly that the demand of counting so much money and the constant strokes of 10 key made my hands ache terribly along with my legs and feet from all the standing.

I’d avoided the idea of college to this point because I suffered from terrible self-esteem and believed myself too stupid to succeed at the rigors of academia. But I’d done quite well as a teller and my boss had aspirations of promoting me as many bosses had. I’d also managed some therapy and was discovering much about myself and my real value as a human being. I began to wonder if perhaps I might be more intelligent than ever given credit for. So I took a chance and enrolled in a couple of classes at the local community college at twenty four. By then, I still didn’t really know if there was something wrong with me or not, but I had a feeling that if I was going to survive, I had to escape manual labor and aspire to doing something more cerebral.

As it turns out, I did exceptionally well in school and loved the entire experience. I still have a deep, abiding passion for education and would probably be an educator today if it were possible. I still had to try to work as much as possible while in school and it took me a long time to finish, in part because of torn tendons, back issues and illness. It took me 8 years to finish with a BA in Women, Gender and Sexuality Studies.

In the duration, the damage to my body only compounded through my own weight gain, the physicality of navigating a college campus daily, working odd manual labor and customer service jobs, and generally just not taking good care of myself. I had no EDS rule book. I had no idea that the ways I was working out and the things I was doing for enjoyment and pleasure, such as dancing, wrestling around with friends and hiking, would be a detriment to my health for the rest of my life.

By the time I earned my degree, I had also earned moderate degenerative disc disease, kidney disease and the beginnings of POTS and marked cognitive impairment to go with it. I lasted five years in the work force before my compounding conditions forced me into disability, all because I was so used to being told that my pain was okay and that I felt I had no right to question it. That I should be able to just survive it. That I was just like everyone else. Deal with it.

Of course by then I was unable to work, had an advanced degree of my own despite being flat on my back in need of herniation surgeries and fighting considerable cognitive deficits and no longer feared men in white coats. I was determined to figure out what was wrong with me. This didn’t make it any easier, though. It would take me nine more years to get a diagnosis of EDS, and that was only after I discovered the illness and connected all the dots myself, finding a qualified specialist to diagnose me. But this isn’t my failing, it’s the failure of the American medical system to properly train their doctors on so-called “rare diseases.”

As I was newly confronted with the fact that the treatment by my parents and stepparents amounted not only to a life of emotional trauma that I have to actively work at daily to keep from affecting my life but also my physical ruin, it was simply too much. It was also compounded by the fact that each family member had come to use me again, each in their own way. To me, this felt like they neither believed I was sick or respected it, just like old times. Rather than acknowledging these feelings head on, my subconscious buried them and in effect they came bubbling to the surface as unchecked as that old anger and resentment I harbored for so long until I took them to the student mental health clinic and carefully unpacked them during my years at college.

Often these realizations surface first in our subconscious and it decides whether or not we’re ready to deal with them in the naked light of day. Sometimes these truths stay with us, lurking around only to trigger bad protective mechanisms created by our damaged selves. I believe this is what happened to me. As a teen, I harbored deep chasms of anger to protect myself. Every emotion I felt twisted into anger. I had room for nothing else. So the anger rose again. I became incapable of dealing with my family. One by one, I rejected them outright, but still this anger burned. They caused me to shut down emotionally, trusting no one, but still my anger burned. It was only through being willing to take the time to sit with myself and dig deeply into these feelings and what might be motivating them before I could locate the true source and get that anger back under control.

I suffered years of bad dreams where I was once again that child, being bullied and manipulated over and again by family member after family member, some of which who are long since gone. I thought, why now? When finally I have found the courage to erase them from my life and they have stayed gone. Why now? What do you want from me? It wasn’t until I made this connection, this realization that I was able to fully make peace with it and move on. And only then could I make peace with the fact that I have an incurable genetic disorder and all that it means.

In large part, I don’t regret having gone through it. I regret being mired in it for so long. I’m glad to have severed those ties and I have no intention of reinstating them. I have long doubted that victims and perpetrators are capable of forming healthy relationships with each other once patterns become set and I have never been able to achieve a healthy relationship with any of my family members. Some claim to have “done the work,” yet they still attempt to lie and manipulate in order to get their way and expect that I’ll just accept it and continue to do for them, as was my former role. My sister, a friend of Bob, said she was going to make amends to me when I let her back into my life after a break of several years, but never did and then consistently proved time and again that she was really no healthier than she ever was, at least in her conduct with me and it’s been pretty much the same thing with each. The most telling thing about this is that I attempted to set boundaries with each of them, they blew up at those attempts, said terrible things in very public ways that weren’t true in order to control what people think of me and then walked away without ever looking back. I suspect they haven’t come crawling back because they know I have nothing left to offer them, given my broken body and bank accounts, nor will I allow them.

I did inform them of my diagnosis as I felt it was my moral obligation to do so since EDS is a genetic disorder and all of my siblings show some signs that they could have it, but I did nothing to encourage contact and thus far none has been made. My hope is that it remains that way, as I don’t want to invite any new strife. I do have nieces and nephews aplenty, however and it is for their sake that I did this. I only hope they have the sense to heed my warnings and act accordingly to help their children learn how to care for their bodies so that they can have much better outcomes than I.

Emotional stress takes a great toll on our physical health. If you have unresolved feelings of this nature lurking in your mind, I implore you to do the work necessary to take them on. You’ll not only find greater peace of mind, but better overall health and satisfaction. It may be painful work, but it’s worth it. We all deserve to be as healthy as we can be in all aspects of our health, be it physical, mental or emotional.


Disability, Grief & Looking Toward the Future

After years of therapy and hard work on the self, I had a certain sense of pride in all I accomplished to overcome so many of the negative childhood thoughts, feelings and behaviors that came from being a neglected child who spent her life as the family scapegoat and caregiver. One particular point of pride for me was choosing to live in truth; the truth about the world around me and the systems that keep us captive to unnatural and untenable lives that are devastatingly unhealthy, the truth about who the people in my life really are and what they’re seeking from me, and above all, the truth about who I am, what I need and how I live my life. My disability has changed some of that, and I realized recently it’s a key part of why I’m having such difficulty making it through the grieving process so important to finding acceptance with being disabled.

In unhealthy families, truth is something that’s denied to each individual in favor of the abuser’s worldview. If you don’t accept that worldview there are heavy consequences to pay. It doesn’t happen at the flip of the switch, it happens gradually over time, through subtle manipulation and constant conditioning and before you know it, your abusers worldview is your own. For children, this training starts at birth, so by the time you’re 8 years old and someone uses your prepubescent body for their twisted pleasure, the word “no” has become unutterable and you’re afraid to tell your parents for fear that they’ll adopt it as a new form of humiliation, or at the very least, blame you. After all, everything has already been your fault for years. By the time you’re 11 years old and taking care of your newborn brother every waking hour and managing the entire household while your 15 year old sister and the adults do their own thing, you no longer question if it’s “right or wrong.” When your mother forces you to live on the street at 16 “for your own protection,” you know enough to question why she refuses to remove the threat she brought into the house in the first place, but you well know your own value and no longer dare question that and long since gave up on the idea that anything is ever fair, at least for you. Concepts like fair and just applied to other people on TV shows. They’re make-believe. They have no place in your reality.

Living in one’s own truth requires a great deal of perseverance for even the healthiest of minds. We humans love to trick ourselves into thinking everything is A-OK. We bury our heads in the sand like ostriches anytime we’re confronted with an inconvenient truth, often to the detriment of our loved ones. My mother was an expert ostrich, who wore blinders just in case she couldn’t get her head in the sand fast enough to avoid the unpleasantness. If she stayed down there long enough, she just might miss the storm altogether. This wasn’t a special power, though. Anyone can be an ostrich and many people go through their lives happily remaining that way.

In fact, we’re hard-wired for it. Our brains try to protect us from certain truths about our lives that seem too painful to deal with. It’s our brain’s job to protect us from pain and it’s clever at keeping us from feeling that pain, which is every bit as real to us as that of a broken arm. Distraction is a great way to attain freedom from that pain. We have plenty to distract us from our misery these days, all packed conveniently into one little hand-held device. We don’t even need the distraction of jobs or people around us anymore. All we need to do is enter a passcode or swipe a fingerprint and we’re off to hours of mind-numbing, emotion-quenching memes of dancing cats and a world full of splendor.

As much as I value living in truth, I too get caught up in this world and find myself playing games. I’ve written many times about the devastating effects of my physical illness on my psyche and how I find myself practicing bad habits that I thought had long since been eradicated and my ability to remain in truth is one of them. Everyone talks about the physical agony of chronic illness, but so few talk about the emotional agony that comes with it. It’s intense and overwhelming and something each of us must go through no matter how we felt about our lives prior to becoming completely disabled. It is something we must also continue to grapple with.

For many of us, disability isn’t necessarily a permanent state. Our health fluctuates and changes, sometimes naturally, sometimes due to new therapies, and sometimes it’s a matter of getting properly diagnosed, treated and learning how to deal with our new bodies. For most of us, our health is in a constant state of flux, as is mine. What this can mean is that we often experience renewed hope, often having those hopes repeatedly dashed against the boulders of failure. Often what we expect to be life-changing turns out to simply make life a little more comfortable, but doesn’t send us back to a life of productivity. It might make us more comfortable or helps us stretch another hour of activity into our days, but it hardly makes us wholly functional. When that reality sets in, we must grieve anew for all we’ve lost and hoped to gain.

As I have found some things that make my life more manageable and more comfortable, I can’t help but fall victim to these dreams. As my cognitive impairment decreases, I begin to think that perhaps whatever connections I’m still missing that relates to creativity and organization will mend, allowing me to get back to creative writing. As my fascia heals and I slowly begin to rebuild much needed muscle, I think I’ll build enough strength and energy to reenter the workforce and we can think about buying a home and having long-term goals again. Maybe we can even still foster or adopt if I get back to work. Suddenly, a slight down-tick in symptoms and up-tick in energy means I can have all those things denied to me by a broken body and a system that devalues the differently abled.

As disabled people, we need hope. We need things to aspire to and look forward to and I’m sure there are a million resources that say “If you only keep a positive attitude…” but these hopes can be equally dangerous things. Dangerous because the human mind doesn’t like to dream in realistic ways. Dangerous because no matter how much we distract ourselves, the moment will always come when we have to admit that they are really nothing more than dreams and our reality belongs in the here and now and then we must turn once again to grieving all those missed opportunities.

Finding acceptance is a critical part of the grieving process, but it’s a lot different to grieve our former selves than it is to grieve a loved one. We must accept that someone is gone, but that is easy when they’re six feet under or a pile of ash. You’re still right here, even if you’re a very different version of the self than you ever knew before. For someone whose health is in constant flux, it feels impossible. It feels dangerous. Accepting feels like giving in, admitting that the fight is over. Perhaps we haven’t lost the war, but we’ve lost the pinnacle battle if we accept our own defeat and it feels like there’s no turning back.

We have to separate what we know from our intentions. What we know is that the life we used to have is one we can never have back. It’s too late. Everyone else has moved on, times have changed and life will never ever be the same as it was no matter how hard we wish it and we are no longer the same people. Someone else has long since taken that old job. Someone else has long since lived the dream we were holding out on for better days that never came. Our childbearing years have left us behind and childless. Our dream homes were long since foreclosed upon. Our friends and family who have abandoned us have long since moved on and why would we want them back, even if they hadn’t?

A refusal to confront these losses, to properly grieve and let them have their place in our lives by taking ownership and allowing ourselves to move through the stages can have very negative consequences on our lives overall. Holding onto these feelings made me incredibly angry and bitter, causing me to revert to old learned, very bad habits of self-protection.  Often, I’ve closed myself off to people and experiences that could have benefited me. I’ve lost time and progress in my own healing and damaged core relationships with my refusal to accept the full brunt of grief. That’s the irony of denial, we practice it to protect ourselves, yet its destructive force will rob us of innumerable gifts if we allow it.

The reality is, we can never go back. We are older and wiser and different. It doesn’t matter how much better we can make ourselves, we are no longer the same people, inside or out, and we shouldn’t try to be. But there is beauty and value in our lives as they are and we can focus on that if we choose. Grieving the loss makes that a lot more possible, and the key to that is accepting that our past selves and lives are gone forever.

It’s a work in progress and a long process. We’re all susceptible to getting caught up in reminiscences and dreams of the past. It’s still difficult for me to see commercials for pregnancy tests and diapers sometimes, difficult to see the many proud pics of little ones from friends on my facebook feed. It’s hard not to let the green-eyed monster take hold every time a former peer celebrates the release of a book. But the key is to allow myself to feel those feelings, examine them and then put them aside, reminding myself that those things are gone for me and that’s alright, because I’m at a different place in my life and I’m working on finding new purposes for that life.

It’s okay to have the feelings. It’s what you do with them that matters the most. If we refuse them altogether, they will still escape through our dreams, our unbidden thoughts and ideas, our secret wishes. It will affect every part of your life and how you feel about everyone and everything, sometimes even causing us to scapegoat someone dear to us who really has no blame whatever in what’s happened to us, simply because we need something visceral to hang our blame on.

That doesn’t mean we have no future and change will never be on the horizon. What it does mean is that you no longer hold onto ideals and dreams of the past, instead forging new, realistic ones for who you are now, based on the present instead of the past. This way, you can look at your life from the perspective of reality rather than dreams of the past, of real accomplishment in the moment instead of comparing yourself to a person that no longer exists. Only once you stop pining for what you’ve lost, can you begin to imagine a future that works with who you are now.


The Toxic Shame of Being Disabled

5191gfd1hql-_sx322_bo1204203200_There’s an understanding in our society, both spoken and unspoken that places the worth of an individual on what they can accomplish. When your health deteriorates to the point that you can no longer take care of yourself, let alone hold a job or take care of your kids and your house, you may find that you’ve internalized that belief to your very core. You quickly begin to wonder what value you have left if you can’t continue to lead the productive life you’ve always had and this can lead to toxic shame.

In many ways, this is doubled for spoonies who spend years going to doctors who do not believe them, misdiagnose them, and spend years searching for answers about their mysterious symptoms and conditions. It can take an average of ten years to get a proper diagnosis. Some patients are outright accused of faking, are shipped off to psychiatrists in the false belief that their problems are psychological and lose the faith of friends and family who do not believe that their illness, or the extent of their illness, is real.

All of these things were true for me for over 15 years and I was filled with guilt and anger with myself over circumstances I couldn’t control. I felt like a complete failure and believed that everyone around me thought I was a failure and a lazy good-for-nothing fake. I became intensely angry every time I had to ask for help, or felt I wasn’t being understood, or asked to do too much. I became enraged every time I felt embarrassed by my cognitive decline and memory loss, the fact that I couldn’t write anymore and that my peers were being unforgiving and callous about it. Eventually, I became intensely angry about everything.

I became so shame-bound about my illness that I began pursuing a diagnosis not to get help, but to prove to everyone just how sick I really was.

I knew logically that it wasn’t my fault, but I couldn’t escape the feeling that I was doing something wrong and that I should be terribly ashamed of my circumstances: Because anger was a much easier emotion for me to deal with, any situation that invoked shame, I quickly replaced that shame with anger. I also utilized my anger as a way to push people away. That way I didn’t have to deal with them or my feelings of shame.

I’ve written about my struggles with these emotions a few times and my attempts to repair the problem, but I was missing a key element. I didn’t understand how this shame seemed to wipe out all the headway I made in my early adult years to heal from an early life of abuse and neglect, and this understanding was key.

Then I came across a wonderful book by John Bradshaw called Healing the Shame that Binds You. As I read the book, I began to understand that the shame I was suffering about my disability was the same kind of toxic shame I inherited from my abuse and neglect. As Bradshaw explains, shame is usually a healthy thing, but when shame becomes internalized and we begin to define ourselves by our shame, it becomes toxic.

“To be shame-bound means that whenever you feel any feeling, need or drive, you immediately feel ashamed. The dynamic core of your human life is grounded in your feelings, needs and drives. When these are bound by shame, you are shamed to the core.” John Bradshaw

In a person who is disabled in a society that shuns and sneers at the disabled and those who are less than fully productive, it’s easy to internalize this shame and let it define us, even if we’ve never had a problem with toxic shame in the first place, which is pretty doggone hard to escape in present day America with familial abuse, childhood and internet bullying, and the pervasive number of unhealthy people around to help pass around heaping helpings of shame at every turn.

Toxic shame effects every part of your life, from how you treat yourself and others, to how well you can cope with the outside world. It bullies us into making bad decisions, hurting ourselves and participating in unhealthy cycles. Toxic shame can create narcissistic or multiple personality disorders, bipolar disorder, obsessive compulsive disorder, addiction issues and more.  I’m with Bradshaw when he says “Hell, in my opinion, is never finding your true self and never living your own life or knowing who you are.” Without resolving issues of toxic shame, it’s impossible to achieve fully knowing one’s self, or finding the contentment or satisfaction you see in others.

Healing the Shame that Binds You isn’t a new book and toxic shame is probably a fairly well known concept for people familiar with twelve step work, but I feel it’s something that could benefit a much wider audience and I recommend reading the book if any of what I’ve said rings true for you. Toxic shame can exacerbate our already fragile health and further complicate issues with dysautonomia, as it often causes anxiety. We already have enough challenges in our lives without allowing toxic shame to complicate things further.

Healing the Shame that Binds You will not only help you understand the nature of healthy and toxic shame, but it will also help you on your way to doing something about it offering tried and true methods of healing the shame that binds you. It isn’t always easy work, but once you feel the uncoiling of those complex emotions and a new level of calm begin to build inside you from this important work, you will understand it’s true healing powers. You may even find improvements in your overall health and a new will to fight.

Right now, Healing the Shame that Binds You is available in audiobook format for free on Hoopla with your library membership. You’ll find hoopla in your app store on Android or iPhone.