Leper — an Invisible Being
Life today as an Invisible being
In my current state of mind and imagination is like being a leper in the years of Christ
No one wants to hear the state of my mind
The imperfections, the mental chatter, the repetitive thoughts and rituals performed in order to get out the door
Perhaps, you are one of the rare ones, or one who understands this, because you too, feel like a leper, or you manufactured this drug, or you are one who has treated and cared for another who was misinformed about the nature of a drug that would turn your mind into something it’s not — confusion, chaos, memory loss, suicidal thoughts, life on pause, life without a visible sign of its imperfections, until this Being, this Leper wants to share what’s really going on inside my head then, you might say — ‘I have to go.’ Or, ask, ‘Tell me something good.’
Shutting me down, only enforces me to believe that I am a leper, then, the never before seriously, thoughts of suicide, become more prevalent, today — they are still only thoughts, actions have not formulated, the details of when, where or how. But, believe me when I say, I understand WHY people who have become addicted to a prescribed medication could easily think of SUICIDE.
Let me tell you another story, my sister’s story. Although I never knew what Roxane was really thinking because she couldn’t speak, she had seizures throughout her life and she couldn’t walk. She was unable to communicate in any visible or verbal manner. Once, I believe I heard her giggle. Perhaps, I was trying to tickle her. I wanted her more than anything else I’ve ever wanted in my life, to be healthy, to be someone I could talk to in my house of boys and rules, chores and go to your room. My mother’s story about her to me was that she had contracted german measles during her pregnancy in 1965, and Roxane suffered from brain damage. She showed me the scar wear they opened her head and looked in her brain. When people used the word ‘retard’ to describe another being unlike themselves, it hurt me so much. I would say to them, she’s NOT a ‘retard’ and that word is UGLY, Hurtful and NOT true. She suffers because she was born during a time when german measles broke out and this affected her brain.
I MISS her still! She died 41 years ago March 1st and I MISS her still! Though her life here was brief — 13 years — her last 3 in two institutions where I rarely was able to see her, I still grieve for the Being of Light that I knew she was trapped inside her beautiful white porcelain body with ebony hair and hazel eyes. I miss the talks, walks, laughter that I believe we would have shared as sisters and friends.
The medical community prescribed a medication to help reduce her involuntary muscles spasms and seizures- Phenobarbital. I believe she was on this medication until she died of bronchial pneumonia and neglect in an institution that washed her bedsheets with harsh detergents that gave her bed sores. I was too young to get her out and care for her myself, only 15 when she was removed from our house, unannounced, as if someone came in and removed a piece of furniture because it didn’t serve a purpose any more. One Friday, while I attended high school, Roxane was being packed up, her clothing, diapers, gowns, hairbrush, her Being transported to some facility far away. I couldn’t ride my bike there. I didn’t have a driver’s license. And my parents rarely went there to visit her.
As you can read just from this interjection of my beloved sister, Roxane, there are really more than two persons I am grieving for.
One is of course, Roxane. The other is my brain and the way it used to work.
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In 1993, I was diagnosed with fibromyalgia, degenerative disk disease and cervical spastic torticollis aka dystonia. The first two diagnosis were something I could manage with vitamins, herbs, exercise and massage. The obvious involuntary spasms were much more likely to get stares, and questions like; Are you having a seizure? Do you have Parkinson’s? Do you need help? Do you have MS?
After living with this condition, and these questions, there were doctors that told me I could try botox, it had proven effective for paralyzing the muscle and reducing the spasm. 10 YEARS later, I decided to try the botox! Instinctively, I thought, this cannot be good for me, injecting a poison and expect anything good from it, just didn’t compute? And, I was right. For me it DID NOT work! After a few stings of a needle, and a few hours later, my neck went from a spastic strain attempting to hold my bowling ball head up right and straight to a limp noodle with a neck brace on. I telephoned the neurologist, he would not return my phone call. I tried again, and again until finally one month had almost passed, and prior to work at my downtown office, I drove to his office and demanded to see him. He looked at me and said, I’ve never seen this kind of result. Let me refund you all of your money, over a $1K at that time for POISON!; and he prescribe two drugs, Clonopin and Trazadone. I deposited the cash back in my bank and picked up the prescriptions. I looked over the information given at the time of the prescription, and noted that Clonopin was an anti-seizure medication and thought, this makes sense, and took it until the prescription ran out (30 days). A few days later, while attending daily Mass, I sat in the back pew of the Basilica, shaking from head to toe. I had NO idea what was going on. But, after a few days of this, I realized, it must have been the medication. So, I telephoned the pharmacist who said, I couldn’t go off of this medication and I requested a refill — and no more shaking! No one (Not the Neurologist, Pharmacist, current Physcian) EVER said to me, ‘this is to be taken for a short amount of time’, ‘stopping this medication abruptly could lead to permanent seizures, hallucinations, thoughts of suicide, create OCD behavior, dementia, or DEATH!’ (I know these things now, because I have experienced some of these SIDE EFFECTS??? And because I’ve delved into more research.)
After 14 years, my head still shakes daily, and I’ve accepted it, I’ve held consistent employment, and I know what triggers it sometimes — stress, strain, or people’s stares. Although, the last one, people’s stares, not so much. I can thank my Bavarian husband for bringing me and my children to Bavaria, where the people there did NOT stare at my neck and make loud or whispering comments about my obvious challenge, but, instead, accepted me as I was in that moment. I am VERY grateful to ALL who accepted me as I am. I am also VERY grateful to Herr Hesslinger, a Sports Medicine doctor who treated my pain and spasm with FANGO and Cranial Work that put my neck to rest and on a path to healing (pre-Clonopin years).
When I returned to the States to live in 2000, the spasms returned in full force again coupled with anxiety. I was mentally and physically stronger then, however, with the absence of real nurturing and healing treatment — FANGO and Cranial Work, was unavailable to me in the USA. I researched ways to import FANGO to the US, I couldn’t, so, here we go again, back to a Neurologist who prescribed the ‘ALL AMERICAN DRUG THERAPY’ that brings me back to the ‘LEPER’ state of being today.
In late February 2019, I decided to go off the Clonopin, I knew I needed to taper, however, I didn’t discuss this with my doctor, I just cut my dose from 1mg to .5mg thinking this would be adequate and I would be on the way to a very clean body. Afterall, I eat healthy, I exercise, I don’t drink or smoke. I’m a good weight for my body frame, surely, this is possible.
After two weeks of cutting the dosage in half, one night, I had such a crazy dream, I didn’t know if this was something that happened and I had suppressed it or what it was all about, and I was shaking from head to toe. I would later this is what one means when they say ‘Night Terrors’ — dreaming of killing people and hiding and running from someone whom I sure is looking for me to place me in jail. — The following morning I met a longtime girlfriend from grade school in a local coffee shop and I shared my experience with her, we haven’t talked much since. (begins the ‘Leper’). I believe people need to know what coming off a drug can do to a person’s thoughts, their brain and how it misfires. I immediately contacted the Pharmacist who suggested that I contact my doctor and affirmed that this is a nasty drug and one that needs gentle weaning. My doctor and I met the following Monday, and she was stunned that I would go off of this without consulting her, however, again, I believed that I was tapering. Apparently, too much, so it’s now been almost three months, and what follows is the list of symptoms and experiences I would like to public to know and the CDC, FDA:
· Night Terrors
· Daily thoughts of Suicide
· Mirror Checks
· Voices in my head
· Light Sensitivity
· Disjointed thoughts
· Memory Loss
· Creativity affected
· Balance issues
PATIENTS BEWARE -
So, the next time someone prescribes ANY drug to you — ASK QUESTIONS LOTS OF QUESTIONS and WHY CAN’T THE USA treat people with the same KIND, GENTLE, NATURAL REMEDIES as those in EUROPE! Why are AMERICANS KILLING their own people with DRUGS?
Be GENTLE everyone — the person shaking in the corner, may be you next week! Be compassionate! I don’t believe people WANT to be addicts when they grow up. I BELIEVE the PHARMACEUTICAL companies WANT to make money and if you disagree with this, just turn on your television during any primetime News hour and listen to the advertisements of DRUGS! — I have GRATEFULLY unplugged my household and am now saving $70/month!
My hope and prayer is that this story reaches those caught in the web of the unexpected Addiction snare — be gentle with yourself, go slowly, you can and will become whole again.
May the sharing of this story also be heard by those who manufacture and distribute these drugs — STOP! We are BEINGS and deserve to be treated humanely, intelligently and gently. NO ONE should be deceived especially by those claiming to be Physicians — ones who are called to heal!