Tuesday, November 1, 2011

How Loss Makes Us More

How do I define who I am? Who am I? What is at the gooey center of Rachelness? If I were a journal article, what would my abstract read? How do we define who we are and have become without including and acknowledging the events and obstacles in our lives we have both encountered with joy and battles in which we have survived defeat? We cannot. We are the sum of our life experiences, that’s why each of us unique, a blessing to this earth, and we should love one another enough to listen and comprehend our neighbor’s journey to whom they have become. I am one of a kind, there will never be anyone like me, and how many never fully comprehend their loss by never sharing me in their life? Too many to count. Life is beautiful, the end product of just breathing, and if you are blessed enough… feeling completely loved by others. Each person has a treasure chest of secrets, not dirty secrets, but secrets which reveal whom we are at the core. However, we are reluctant to share our cores with others, because this is where our vulnerability lies. It takes great courage to fully embrace whom we are, whom we are becoming, loving whom we are, what we value, whom we love, how we have hurt, but still brave enough to peel back our layers of armor we have built upon our hearts to expose the oasis of everything beautiful about being human and life.




I cannot separate the painful scars on my heart and soul I have accumulated in my 31yrs, but why would I? I am absolutely marvelous and original, frankly more fearless than ever and so very alive in tune with my femininity, at peace with humanity and bursting with vibrant love and energy. Pain and loss complete our character, chiseling our soul and hearts. Have I suffered unthinkable pain and strife? Have I cried when I wanted to be stronger than vulnerable? Have I hurt so bad I thought I would die? You bet! For I have learned the difficult way that for every loss we encounter in life, we are given a new key to our inner sanctum; if we are brave enough… we will unlock this new door to whom we are becoming. Life isn’t fair… Ain’t that the understatement of all time! No life is nothing but fair, nor is life beautiful all the time…. Life is often ugly, and if we are wise we will remember that when life is great for us, it’s a hardship for someone else in this ride called life.



Loss…. It comes in all shapes, sizes, forms and degrees. Loss tears us down, crushes our core of love and hope to bare bones. Pain brings us to our knees extending our hands out for help as most others glance and pass by, only focused on themselves. Loss removes all the fancy packaging of who we really are at our core, exposing all our vulnerabilities to ourselves and those in our inner circle. Loss is often mistaken for weakness or defeat. Nothing could be more far from the truth! Loss is strength building in action. Loss is character building, value instilling, love forming experience we should embrace, not resent. First, when we encounter loss, we feel cheated, a void short-changed, if you will. However, I have learned that loss is actually the key to exponential gain. Loss stirs us to become better versions of ourselves, challenging us to use our scars, our pain, our experiences to make us better friends, citizens, lovers, parents, people. Loss teaches us lessons nothing else can; it chisels us into one of a kind people. People who are not like anyone else, and together we have so much to share and learn from one another, if we’d only let loss carve our hearts and deepen our capacity and imagination for authentic empathic understanding and love.



I am 31, Mom always said I was born 30, and I guess in many ways she was right. I am pretty mature, sensitive, and level-headed. My losses include many, many most have yet to experience, esp. my peers. What have I lost? My innocence at 6, some bullying and feeling left out, broken heart, betrayal, foreclosure, resignation of a normal life due to Narcolepsy with Cataplexy, Sleep Paralysis and Hypnagogic Hallucinations plus Fibromyalgia and Rheumatoid Arthritis, Spousal abandonment and infidelity, divorces, loss of loved ones, several other health battles, etc. The consequences of these loses have combined in my life to this point in time customizing me into the fine unique specimen of feminine humanity I am today, and though the pain and the bleeding and tears I have shed have hurt like a razor so deep into my heart and soul, I would not change a thing. This is who I am, whom I am meant to be, so I can best serve God, love and understand others, and above all help and love others. I have so much love to give at the core of my soul. I actually feel its warmth radiating from within my chest outward, and I would never want to change whom I have become. I am a wonderful person, a phenomenally beautiful woman inside and out, my inner strength resolute; I feel I can face anything, because I have already faced what most emphatically fear. I will not accept defeat, defeat is not who I am…. I am and will always be victorious because that is the woman of courage and strength I have become.

Thursday, October 20, 2011

Window Pains

Large space I came with high hopes. Hopes for us, hopes for a garden, hopes you'd provide us with great joy to watch our future children play and grow. Hopes I would one day afford and have the strength to create the garden of my dreams. The mirage of colors of gorgeous blooms and their sweet perfume fragrance the air and our souls.With our plaid patterned sofa's back against your enormity, you fed in the heat in the summer, sucked the warmth from all in the winter. Dressing you with royal blue curtains-- a challenge for your size, but you were a good sport.

As time progressed,through you I saw the yard in neglect--me disabled, Ken resentful. He let the grass grow 3ft. high, rarely mowed, and blamed me for us ever meeting you. You saw my heart break, our dreams die, our marriage suffer, our standard of living reduced to poverty, and almost the end of me. I still think of you and wish I looked through you to see my lovely secret garden, that never was.

(wrote this at the Narcolepsy Network Convention in Las Vegas October 2011 following my Foreclosure and Divorce- capturing the devastating loss of my home and spouse) Of course life is so much better than anything I had before!)

Wednesday, May 4, 2011

Explaining and describing the Symptoms of Narcolepsy to a Person without Narcolepsy

Excellent descriptions by cybereaper as found at http://www.talkaboutsleep.com/message-boards/viewtopic.php?p=84503 :

"For a real 'explanation, I have tried, in a recent forum with someone who watched an N get fired and wanted to know more, to explain it to them, this is what I wrote and what they said - sort of long, but I will snippet alot. Some of you may agree on my explanation, some may not, but I wanted to at least post my attempts at explaining this.. so you can see the lengths we could go to in order to expain it, but the continued lack of understanding from those who have not experienced it:
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> Beyond the physical pain.. the emotional pain suffered by over 120 thousand people is in having to hide who they are everyday. People not understanding that for us.. falling asleep is not good, not funny. That having to hide your emotions 24 hours a day makes for a very lonely life. That living in a perpetual state of horror from nightmares so realistic that it can only be paralleled by the real thing.. every night, every day. I have seen videos on america's funniest home videos with dogs chasing balls and collapsing from cataplexy (a side effect of narcolepsy) and people laughing for hours. They were required to pull those videos when they found out it was an abuse of the animal and not funny. But, we go through it daily. When doctors mistreat us and the same goes for neurologists, psychologists and on and on, who are we supposed to go to?
So... where does the pain come from? People look, point and laugh.. oh, you're like that weird guy on deuce bigalow banging his head. You ever wonder if you didn't bang your head if you'd still be ok? You take amphetamines? You must be one of those terrible meth
addicts who screws up the lives of little children! You fall asleep all the time? You must need to get more sleep or learn to sleep like the rest of us!
If you could, but for one second, imagine this being translated to a blind person: Oh, you're blind? Well why don't you take off those stupid dark sunglasses? You run into things without your cane? Why don't you try looking where you are going next time? You need special books to read? You're wasting taxpayer money. You're blind?
Well, you shouldn't ever have a relationship because you will only give birth to blind babies.
Sound harsh? I think so. Do people say that to blind folks? Generally, no. But, the narcoleptics get it because it is so misunderstood. I can't tell you how many times I want to break own and cry when I read about a new narcoleptic, just having been afflicted and diagnosed posting questions like: Am I really a bad person? Why do people hate me? Am I insane, am I really losing it? Is there something I could do to be better so people wouldn't make me feel so bad? What can I do to quit being so tired that my husband is going to leave me? Somebody help, I'm going to be fired and I can't stop being tired, what to do? Why does my spouse hate me? Help, they are going to take my kids away, and all I do is sleep more, nothing wrong!
THEIR REPLY:
Wow, I would think most everyone is ignorant to the real side of your disease. Myself included. That is why I asked, I wanted to hear just a little about what you go through so I could know more.
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Yes, we do hallucinate in a way that is more realistic than what schizophrenics go through. No.. we are not schizos (well, I may be.. the rest aren't , but we see, hear and feel things noone else can. Imagine your most vivid and wild dream, and then imagine making it a billion times more real! Be fun if you flying, if it was sensual.. suck if it was a nightmare and you were being grabbed and attacked. There is not one narcoleptic with these hallucinations that does not live in fear night to night and board themselves up in their house. They know they have hallucinations.. but what happens when the real thing comes and we mistake it for a hallucination? Yeah.. they are that
real.
Anyway, thanks for the interest. The intolerance is as sufferable as
being treated like a piece of garbage for who you are and the way
you were born. I can really relate to a lot of cultural abuses.
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The hallucinations are called: Hypnogogic hallucinations. I cannot find a good definition of it online. But, basically, due to the interference of REM.. our dreams can happen while still in the conscience state. The brain is supposed to shut down to stage 3/4 sleep and paralyze us. Well.. it paralyzes us, but it doesn't always shut down. So what most people see with their eyes closed, ours are wide open and all of our senses are active.. so we hear, smell, feel, see, etc. The big complication is the brain can be lied to, thus hypnotherapy, subliminal messaging, and while we are trying to consciously force ourselves to realize it's a hallucination, the brain, or unconscious, operating separate of the conscious, is taking it all in as real. Not every narcoleptic gets this, and some
people without narcolepsy can get this if their REM patterns are mixed up. It's not a big deal unless you let it get to you. Just gotta know that the dark figure standing over you with a knife and a rubber ducky isn't real! LOL.. sounds weird, huh?
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It does making falling asleep hard though. Here's why: we also have cataplexy. That is complete loss of muscle tone (basically, we lose all control over our limbs and main body, metabolism slows down, and we can be confused for dead. It has happened 3 times I know of.. 1 time to me.. as far as having an attack so severe others think we
might be gone), but we are still conscience and wide awake. Now.. this sets in only with heightened emotion. In other words: no big time laughing, joking, smiling, being happy, getting sad, angry, loving.. emotional in ANY WAY. Add to this the fear that we are going to have these realistic nightmares and *poof* - we are now shaking (cataplexy is also a form of a seizure), which makes us even more scared, meaning the hallucination will become more severe.. and the idea that all this would happen is very disturbing. So, Narcoleptics don't want to fall asleep. But, what is the complication with that? We have a sleeping disorder that is going to knock us out no matter what >< -
---After all that, their response is:
What is it that causes these hallucinations? I'll be honest, I thought the disease was simply a misfiring of whatever it is that keeps us awake vs. asleep (like an alternator in a car). I didn't realize there was so much more to it.
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That is the best reply I have read yet. It perfectly shows just how misrepresented N is in the real world."
-cyber