Coming out of the "other" closet: I have muscular dystrophy and am disabled

The following is an open letter that I sent to my friends, colleagues, staff and other business acquaintances. It was sent in March, 2006 after I was accused of drinking on the job when  my boss noticed I was staggering and had fallen at a work related social event.

Until that day, I did not disclose my disability to anyone at work.

Dear Friends,

On August 17, 1989 my son (who was 16 at the time) and I were diagnosed with a form of muscular dystrophy called Facioscapulohumeral Muscular Dystrophy (or FSHD).  You can search on the internet to find out more about  FSHD, and its symptoms.

FSHD is one of the many neuromuscular diseases covered under the umbrella of the Muscular Dystrophy Association (MDA).

FSHD doesn’t shorten life expectancy, and for most people it progresses very slowly, giving you time to prepare for and adjust to changes. Unlike some other forms of muscular dystrophy, this one isn’t threatening to heart and breathing function. In my case, it is affecting my shoulders, neck, back, arms, hips and lower legs.

I trust you all and wanted to tell you my story…..

The first time I noticed anything out of the ordinary was when I was pregnant with my son, when I was 19 years old in 1973. I would be walking down the street and my legs would just give out for no apparent reason. The doctors were unable to find anything wrong. I was a waitress at the time and had to stop working since it affected my ability to work waiting tables. After my son was born, the symptoms abated and I stopped falling. It wasn’t until after the birth of my daughter, nine years later, that my symptoms came back.  I started falling more often, sometimes more than once a week. The doctors still had no clue as to what was going on.

They ran all kinds of tests and determined that my right leg had lost 10% function and my left 5%. They thought it was from over-exercise using weights and pulleys. However, even after time to heal, I never regained the muscle loss. I found that wearing supportive shoes helped me maintain my balance and lessened my falls. I started to wear cowboy boots as they seemed to help me the most.

In 1987 I had an episode which caused a severe rash, and lesions developed on my face. My eyes swelled close and my sinuses became impacted. My immune system was being compromised by an allergic reaction, but the doctors could not figure out what was causing it.

The doctors thought I had Lupus and began running extensive tests. This continued for two years until I was referred to UCLA Neuromuscular Clinic (funded by the Muscular Dystrophy Association – and the Jerry Lewis Telethons) where it was determined the exact nature of my disease. Muscular Dystrophy.

Apparently, my disease was progressing rapidly and the atrophying muscles were releasing proteins into my system causing my liver to malfunction. My immune system all but shut down and my body was in a form of shock, causing an allergic reactions to everything in my environment.

As you can imagine, I was in shock and denial- being diagnosed with an incurable disease has a way of doing that to a person. To further complicate the matter, my health insurance company dropped me, claiming that I must have known I had this disease and did not claim it at the time my insurance was issued. They refused to pay for all the outstanding medical bills which were over $30,000. I decided to fight back and filed suit, which settled out of court three years later.

I didn’t let the disease stop me from any of my plans. It did slow me down a bit, but I persevered. I went through a divorce, finished earning my bachelors degree, and raised a family on my own. I even started and grew a very successful business (property management).

 The disease did not go away and slowly affected me more and more. It wasn’t until 1999 that  I finally decided that I needed the help of the MDA and was fitted for leg braces. 




It was a very difficult decision for me, as I felt that I could no longer deny it. However, after I was fitted for the braces and saw how much they helped me walk I realized  it was the best decision I had made. I regretted that I did not ‘give in’ sooner. With the help of the leg braces I was able to regain stability and found I was falling less and less.

During the next few years I was quite active with MDA and participated in local fundraising and at one point was even on the local broadcast of the telethon. I never let on to my staff or colleagues that I myself was a victim of muscular dystrophy. In fact, I never even told those running the fundraiser, that I had MD.

The braces helped, but as the disease progressed I once again lost stability and began falling. People began to notice that my limp was worsening and that stairs were no longer an option for me. Even street curbs have become a challenge. Staggering was the norm for me and sometimes I would just lose my sense of balance. This was especially true when I am in a period of high stress, or have been ill. These events seem to make the symptoms worsen.

Well here I am again, making a very difficult decision. To “come out of the closet” so to speak, about my disease. Writing this letter has been, again, one of the most difficult decisions for me to do. However, I felt I owed it to myself to not try and deny it any longer.

I do not define myself as having this disease, but it is a part of my everyday life. I cannot just close my eyes and will it away. When I put on my braces every morning I am reminded of my limitations. My physical limitations affect my mobility but in no way do they hinder my performance here as a mother, a loving partner or at work. I have full intension to continue working full time just like every able bodied person.

I feel that the emotional challenges that I have faced with this have made me much stronger. There isn’t anything that I can’t overcome!

Please do not be afraid to ask me any questions about this, as I am very willing to discuss this with you all.

Sincerely,

Dakini

The day they pointed the shotguns at the pregnant girl. © 2011 Dakini Verona

The day they pointed the shotguns at the pregnant girl © 2011 Dakini Verona

 “Hi, I'm Rebecca. Call me Rebecca, Becca, but never Becky." Funny how those little things stick out in my mind. When I was introduced to my “old man’s” friends that is what I remember. Her name was Rebecca. She had long shiny vibrant red hair, which fell just below her shoulders. She had soft full lips that when stretched into a bright radiant smile revealed teeth that were impeccable. She seemed more like a loving older sister than a hard assed drug dealer.  

I guess that was because she was always kind to me. 

Rebecca’s “old man”, Daniel, was a drug dealer. The typical kind. Not the happy go lucky pot smoking, acid dropping dealer. Oh, no. He was the hard edged, gun toting, tough son-of-a-bitch cocaine dealer.  His clothes were dirty and his long stringy hair was flat and greasy. You know the type, the ones you see in the movies.  I am sure that not many of you have come face to face with this type of a scenario, so I will try to give you as many details as I can, or want to remember.

Rape [part 2] Son of a Sheriff. © Dakini Verona 2010

Rape [part 2] Son of a Sheriff. © Dakini Verona 2010

I sure wish that I could say that I shot the son of the sheriff, the way Clapton sang about shooting the sheriff. But it never happened, only in my wildest dreams and fantasies. As I was saying.. I was alone in the dark streets of Sarasota, Florida [rape part 1]. I was 14 years old.

Eric Clapton sang I Shot the Sheriff

My rage had subsided as quickly as it rose. I was blindly walking now, trying to figure out how I would get home. I couldn’t call my parents. No. That would never work, to admit I had been wrong. So I continued to walk and hoped a solution would rise from the dark.

I heard the car pulling up behind me, it was one of those large muscle types of cars. The kind that had a trunk so big you could easily sneak in 4 kids to the drive-in theatre. The kind that you could find 6 rambunctious boys hooting it up on a Saturday night.  In retrospect, the kind that you should never get into, even when you know the occupants.

RAPE [part 1] © Dakini Verona 2010

Rape [part 1]

WARNING SENSITIVE SUBJECT MATTER

The word itself causes those of us who have been victimized this way to shudder. But I think that it is better than the way I responded before, which was to shut down. Backup.. so far back that I left who I was behind. Sometimes it is the only way to survive. I never fully had what is commonly known as multiple personality disorder, but I know.. down to the core of my soul, that there are pieces of me that left during times of trauma.

The little 7 year old me found a place to run to. She curled up safe and sound where no one could reach her. That bad man may have been hurting that “other little girl”, but that was not ME.

I learned that trick at a young age. No little girl should ever have to run and hide that way. I am so sorry that I was unable to protect her. She was so innocent and naïve. He was just a victim himself, I am sure. That happens to young boys that are molested or raped. They grow up to become the very demons that brutalized them. Ironic, huh?

I am sitting here, somewhat afraid to explore my own demons. There were so many times that I found myself enduring yet another sexual brutalization. I only remember bits and pieces of some, those that were the most tragic have burrowed themselves so deep inside that I have to be very careful about pulling them out. The technique I have learned to is to fist acknowledge that I was the victim. That I was an innocent in all of it. Then I have to assure myself that I am now safe. Not only from my attacker, but from others that might sense that I was once a victim (many time over) and then prey on that.

I have to shed some tears.. it is all a process. I have to tell myself – I am ok. I am safe. I am loved. No one will hurt me that way, ever again. I will not allow it. I have to convince myself that it is now just a memory. I give myself permission to let it go, after I expunge it from my memory once and for all. I can release it, once I have told my story. Once and for all. My cheeks are wet. My voice is weak. My teeth are chattering as I stand here on the precipice of this monumental task trying to find the courage to bring the memories back.

This is the first time ever, that I have actually purposefully, embarked upon this undertaking. I will tell it all, as I remember.

Memories.. can be debilitating.. and liberating at same time.

A reader recently wrote and asked why I am not writing my memoirs in chronological order. I tried to explain that these are memoirs, not an autobiography in the true sense. Memoirs allow us to retell things as we remember things.

It’s funny how our memories work – the way we remember events. Sometimes the memories flood in and ravage you, just like a rogue wave in the ocean. No warning. Knocks you off your feet, leaving you gasping for air, scrambling to regain any semblance of balance. Sometimes they sneak up on you, triggered by any one or combination of smell, taste, gesture, or sound. It might also be a spoken phrase, tone of voice, song playing in the background. Other times you are jolted awake by the recurring nightmare that dissipates like smoke, not allowing you to hold the memory and ironically keeping you from letting it go at the same time. Sometimes you might find yourself struggling to remember something. You might think back to events preceding or following the event, to try and rekindle the memory.

So given the fact that memories are not recalled in a systematic way, you might understand why sometimes my stories will come to an abrupt end and leave you hanging. It is not that I don’t want to go further, it’s not that I want to tease you, it is just that sometimes the memory is inaccessible, sometimes I am grasping at the smoke…never able to see the images clearly.

I am sure if you have ever survived a trauma you will understand what I am talking about. They have a label for this: PTSD (Post Traumatic Stress Disorder). Many survivors live with this on a daily basis- victims of molestation, neglect, sexual abuse, spousal abuse, and soldiers, to name a few.

PTSD has a way of causing victims yet more pain, through loss of self, loss of memory, loss of self-esteem, loss of trust, and on and on and on. As we heal, we find the memories surfacing a bit at a time.

If all of my memories flooded back at once, I am sure I would be in a loony bin right now.. or worse. My higher power gauges how much I can deal with at any one time and only allows those to come through. I take a deep breath… let it go and move on.

If I had not gone to therapy, if I had not self medicated, if I had not broken my consciousness into several pieces and hidden them away someplace deep inside where they remained safe.. who knows where I would be.. or even more importantly - IF I would be.

When I force myself to try and remember something too soon, before I am ready; I feel a disconnection. I leave my body and I numb my feelings (emotions). I find myself observing me from outside of my body. This is the only safe way for me to re-experience the events, without opening the wounds. You see, I am still afraid. Very afraid. Afraid of some of the memories.

I feel them clawing at the outer shell of my sanity. I dare not turn around to face them.. not yet. Soon. When I feel safe. When I am empowered. When I have the weapons cocked and ready. Until then, I will walk briskly down this path. Trying to convince myself that I will not be hurt again. Assuring myself that the past cannot catch up with me until I am ready. I have to be ready to defeat my demons once and for all. But there are so many.. so many.

Sometimes I need a rest. I guess that is what my “real life” is all about.. resting between the stories. Time to spend working, studying the mundane, playing at renaissance faires, loving my family, baking, spending time with my pets. It is at these times that I try to find time to heal the little girl inside, the one who was neglected and abused. The one I abandoned in the past when I ran to the streets. The one that lived her life as a victim. A victim I will be no more. I have made the choice to go back to that little girl and forgive her. To forgive that teenager. Forgive myself for walking that line myself as a mother.  

And then- once recharged, I find the courage to face another dark memory. Reveal it to the light. See it for what it is or is not. Let it go. Let it go.

I deserve more… but until I release that which I have kept locked up all these years I can never be free. Not really. As Janis once sang: “…Freedom’s just another word for nothing left to lose…”

One of those life changing defining moments.

Defining moments.. when something occurs that is so significant it forces you to make a choice as to which path to follow. 


I was reminded today by someone from my past, about a day long, long ago when I was pregnant and in the middle of a drug deal gone wrong... the sawed off shotguns were pointed at no other than me.. yep.. the pregnant girl!... 


stayed tuned


Dakini


update... someone on Facebook made a comment: "What that's crazy!"


my response:

yes..all true. I would sometimes doubt my memory of that day, but then yesterday someone, that I knew back on the streets sent me a random email in response to a post I had on Amazon (about the book Telegraph 3 am). Seems he was also photographed, but they did not publish his image.

Anyway.. turns out he was in that room.. his email trigged my memory and I am trying to muster up the courage to go back to that day and pull it all together.

You see, my boyfriend at the time was a coke dealer.

Autobiographical Statement - C 1994 Dakini Verona

My Autobiographical Statement

The year was 1994. I had just graduated from California State University, Long Beach, with a degree in psychology. My plan was to continue on to graduate school and earn a master’s degree in family counseling. Well, as they say “best laid plans”. I never did get that advanced degree in psychology, I ended up getting it in business and it was not until 2009 that I was able to reach that goal.

However, as a part of my original plan, I applied to Antioch University in Marian Del Rey, California. As a part of the admission package I had to prepare an autobiographical statement. What follows is the “watered-down-unemotional and politically correct” account of my life. Like I said, although I was accepted at Antioch, I did not attend. Life got in the way. 

TRAUMA LINE 2 1968-1973

TRAUMA TIME LINE 1 1954-1968

Kidnapped. Beaten…and beyond. © 2010 Dakini Verona Beaches and Bikers.

Kidnapped. Beaten…and beyond. © 2010 Dakini Verona

Beaches and Bikers.

The fateful beach party or the first time I was beaten and brutalized.

Do you have any idea how hard it is to see those words on this blank screen? My heart aches. My pulse quickens. My eyes tear uncontrollably. Not a memory I want to keep. Oh, no. not a memory I want to necessarily relive either. But there again is the paradox. I must purge them all. Those demons inside. Once they are out, once they are released I can put it all into perspective. I will be able to stand back and see how the years have un-warped the skewed sense of time. During trauma our minds have a funny way of distorting time. If you have ever been in an accident, you may know what I am referring to. Yes, your life does flash before your eyes in a mere few seconds. Just imagine that you are in that accident, but instead of it lasting 30 seconds, it lasts 30 minutes. Now, imagine it lasting 3 hours. As a victim of violence those 3 hours seem like more than 3 lifetimes.

Our minds have some safety mechanisms. It shuts off when the pain is too great to bear. Just like you hear those stories when people have lost a limb. The sensors turn off and all you feel is numb. Well, it is similar to that when you are brutalized. Your sensors turn off and your body becomes numb. Sometimes your consciousness even leaves your body. Sometimes you just pass out. This was one of those times, thankfully.

I was 14 years old and still living at home with my mom and dad. We were at our winter home, in Nokomis, Florida. I was still naïve, but had lost my innocence first at 7 and again at 13. Sad that this is the story that so many survivors can tell. One incidence leads to another and another and another, ad nauseam. If only I was able to see where that path was leading… if only I could have known that self destruction rarely works in the long run. But I had to numb my pain. Had to find a way to connect to someone. And was hoping that there would be no more pain. Little did I know how this would end.

Being a cute and bright teenager, I had a lot of invitations to parties. I didn’t get along with many of the other girls in town, but the boys were always friendly. I now understand how it must have been purely hormones that influenced the boys and it was instinctual territorial behavior that kept those girls from becoming friends with me. So when I was invited to a beach party by a few of the local cuties (boys) I jumped at the chance to hang out, get a lot of attention and most likely drink myself to oblivion.

I can’t remember what I told my parents, but I am sure it was a well fabricated lie. They probably did not want to deal with me, so they just convinced themselves to buy into my story. I was not easy to deal with, I am sure. I got a ride out to the open beach area south of the public beaches. It was deserted, the perfect beach for a wild party.

We pulled up and I saw the bonfire going strong. It was a December night and the night air had a bit of a chill, which was rather unusual for this part of Florida. Maybe it was my senses giving me a warning to turn back. Regardless, I did not heed the sign. There were lots of really cute looking boys and I wanted the attention from someone special. He had long blond hair which hung down to almost to his waist. His skin was bronze and fit well over his defined swimmer’s body. He must have been about 21 years old. I didn’t care, I wanted to have him pay attention to me. I was surprisingly shy, until I had indulged in some liquid courage. Thunderbird, I think it was, or maybe Boone’s Farm. Whichever it was, it was one of those disgustingly sweet, cheap drinks that bums and teens drink. The kind that tasted really rancid coming back up.

I managed to avoid any problems at the party, in spite of the fact that a bike gang rode up and joined us as the fire was dying down. They were rough and wild and a bit too “touchy”, but they were reasonably harmless compared to what happened next.

This story and more.. in Memoirs of Dakini on Amazon

...

I remembered how little the police had done the  first time I had reported this type of crime. They told me to shut up, live my life and never talk about it again. But this time, I knew that creep would pay. I did shut up, lived my life and never talked about it again.

Kidnapped. Part II Innocence Lost © Dakini Verona 2010

Kidnapped. Part II © Dakini Verona 2010

Innocence lost.

Saugerties, New York. A very small town, not only in its size but in its level of tolerance. It was 1961. Me, I was 7 years old and just been transplanted from a beach city in Florida with my family. We lived in an even smaller section of Saugerties, called West Camp. The settlement of West Camp did not even warrant a traffic light. It was just a small area more rural than anywhere I had ever lived before.

As with many dysfunctional families, priorities were not quite straight at our home. Mom and Dad were in love with each other, that was quite clear to my sister and I. They were not really equipped to deal with the “problem child” I had become. I was a surprise to them. After all, Mom was 34 and Dad was 43 when I was born. They were looking forward to enjoying their golden years and then I came along and messed up all of their plans. It was no wonder that I was neglected. 

They tried to do the best they could, but as I look back, I can see that I was a hindrance. But it was that neglect that drove me to seek attention from others. So was it the chicken or the egg? Was I a problem because I was neglected or was I neglected because I was a problem? I know that each of these actually fed off of each other, so whichever came first is totally irrelevant at this point.

...................................

~to be continued~ 

Read more on Amazon

   

Kidnapped. Beaten and beyond - time to slay some dragons. © 2010 Dakini Verona

Kidnapped. Beaten…and beyond. © 2010 Dakini Verona

 

I have been putting outing off delving into some of the darkest and painful memories of my past because of fear. Fear of unleashing the monsters lurking within. They have been trapped within the deep crevices of my mind, out of reach from conscious thought for so very long. I know I must release them. They haunt me from beyond the shadows. I pray that once they are purged from my mind, it will somehow cleanse my soul. Even if only a little, it will be worth it.  

Why do we (victims) walk around thinking we have done wrong? Why do we wear the acts against us in shame like a scarlet letter? Shouldn’t the guilty be the ones to suffer for their crimes? You would think so. However, society has led us to believe that we are responsible for all choices we make. Even those made as innocents. Even those we were led to make at the coercion of evil doers. Yes, even some that we made as naive children.

Once a decision leads you into a mistake – leads you into harm’s way, there is no way to erase the damage. The invisible scars are etched on your soul forever. You are no longer capable of making the right choices and are often led a recurring path through the darkness, with an insatiable appetite for destruction.

Dare I uncover those deep dark secrets? Dare I release the demons? Am I afraid of letting go for fear that my soul will be empty once purged? Or, am I afraid that the demons will take over my soul? I don’t know what will be worse, to keep them or let them go.

There is something inside urging me to press on. To walk through the fire to help me overcome those fears. I must look back, once and for all and come face to face with those demons so that I can conquer them and move on.

the full story and more have been published in my book

Memoirs of Dakini

Now on Amazon

Auburn Trail Part I © 2010

Auburn Trail Part I © 2010

Somewhere in my travels, I came across a tale of the hiking trails which were reported run along the rim of the mountain range from Mexico all the way north, to Canada and beyond. I don’t quite remember the official name of the trail, nor even if there was one, but I will call it The Auburn Trail, because I was able to access the trail from Auburn. Auburn was a sleepy town nestled in the foothills of the Sierra Nevada Mountain Range outside of Sacramento, California. Being the thrill seeker that I was, naturally, I was drawn to this new potential new adventure.

I had mentioned to my parents during my trip home for their anniversary that I was thinking of buying a horse and riding across the entire country. As you can imagine, their response was less than favorable or supportive. I am sure they thought it was just one more pipe dream. I even broached them with the concept of loaning me $100 to do so. Now, granted, I had no idea where I would buy a horse for $100 or how I would manage to feed the horse or even take care of myself on this trip. But you see, such is the beauty of naivety. You have all these great ideas, but no worries about the consequences of acting on them. Well, back to my story about The Auburn Trail.

As I try to remember the series of events leading up to this monumental adventure I find myself struggling to fit all the pieces together. The details are really vague… as I sit here, almost 40 years later. However, I will try to recall what I can. To be honest, I am not sure I could have recanted the story in its full details even as they unfolded. Such is the curse of living a life where you spend most of your time dazed and confused, if you get what I mean.

Anyway, I decided to hitchhike to get as close as I could to the trail and determined that Sacramento was my destination. According to the maps, it was the gateway to Auburn. My experiences on the road had taught me that it was always best to start with the larger city to seek information. Small towns just were not that friendly. After all, I wasn’t in Woodstock anymore.

The journey was not uneventful, as you may have already guessed, or it would not be noteworthy. It started with my on the sidewalk in Berkeley with my pack and bedroll at my feet and my thumb raised high to oncoming traffic. I was always lucky to have a great sense of direction, so I knew which way led out of town. I never had to wait long when hitch hiking, I guess it was because I was, as my dad used to say “easy on the eyes”.

A rather non-descript sedan that looked like it belonged in the suburbs, pulled over to the curb. It was not the typical ride I had grown accustomed to, not a hippie-mobile.  It was getting late and in spite of my apprehension, I left my post on the familiar sidewalk of Telegraph Avenue to approach the driver. The middle aged businessman looked like all the others that were driving home after a boring day in the office. My instincts warned me to wait for a ride that had a better vibe, but he assured me he was safe. Famous last words.

I got in the car, and kept my knap-sack and bedroll close at my feet, should the need of a quick escape be necessary. I sure am glad my instincts also told me to reach down and feel the comfort of the hilt of my hunting knife which was wedged between the top of my right knee high leather riding boot and jean leg.

For more... get your copy on Amazon