Living with the Suicide Disease

I have a condition that is subtitled “The Suicide Disease” (Trigeminal Neuralgia). Wikipedia actually has an easy to read, accurate, description of it. It is really hard to treat and destroyed my old life in many ways, yet it led me to a new life. I am finding it hard to be grateful to an illness that causes me pain almost every day. But God has His plan. I NEVER believed that before. I didn’t like it when people said it to me after my son died. Or when my uncle died. Or when my aunt died. Or when I found out I could never have a baby.

But I believe it now.

SON OF A …. THIS %$&*^$ HURTS!!

Even though I am a Christian and try to live my life for God now, when the nerve pain in my face flares up, that is about the only thought that is in my mind. For the first two years with this horrible condition, I was on narcotics, (along with anti seizure and anti viral medications that I take to this day) basically to save my life to keep me out of pain that might make me depressed or suicidal. I had nothing in my life but the pain and my precious dogs. Everything else fell apart. I was starting to understand the nickname of this horrible condition. 

I have a condition that is subtitled “The Suicide Disease” (Trigeminal Neuralgia). Wikipedia actually has an easy to read, accurate, description of it. It is really hard to treat and destroyed my old life in many ways, yet it led me to a new life. I am finding it hard to be grateful to an illness that causes me pain almost every day. But, God has His plan. I NEVER believed that before. I didn’t like it when people said that to me after my son died. Or. when my uncle died. Or, when my aunt died. Or, when I found out I could never have another baby. Or, when my husband left me because of that, and went and immediately “found” someone to do that with, and did, just that. Good times.
But I believe it now. Even though as I type this, I am laying so my face is propped up against a heating pad, I would NEVER take my own life. Being the mother of a child who died through no fault of his own, (or anyone’s) I would never harm my relatively healthy body. That isn’t the point of this blog. Some people (about 25% of patients with this disease) who don’t have the medicine that barely works for me (most of the time) do take their lives. It is impossibly heartbreaking. I pray that all of us afflicted with this find doctors who understand our illness and don’t shun us as “pill seekers.” Drug addicts, especially those who steal medicine from people like me (yes, it has happened) have never had pain like ours. I am thankful I have a doctor who knows I am not a “pill seeker” and that since I have recurring shingles in my ear and cranial nerves, that I am not having a party. My life is about living with pain and still being grateful.
I am thankful for my wonderful husband, family and friends. It hasn’t been easy. My old Myspace readers will recall me reporting friend stealing my pain meds, leading to a doctor thinking I was a pill popper. (I NEVER TAKE MORE THAN PRESCRIBED-that is a good way to be DEAD, fast). I lost a job I loved, a husband I once loved, a home I felt secure in. I have had family problems because they, understandably, tire of seeing and hearing me in pain and feel helpless. They lost patience with my dizziness, forgetfulness due the medicine, and the fog of the incessant facial pain. They despaired the loss of the “old Cherie.” Some friends have become distant, too. Still, other “friends” drop away after I refuse to share my medication with them. After I cheerfully tell them what doctors to go to for their “ailment” and offer to help them make an appointment, they disappear. I can see them coming a mile away, now. It’s pretty sad.

I couldn’t do what I used to do, at least not in the same way. My ex husband just fled. He was unsympathetic and had already seen me through infertility issues (and actually cited that reason on the divorce papers) and just bailed, regardless of my standing by him for nearly ten years of  the incurable Ulcerative Colitis with which he struggled. I wouldn’t do anything differently. I take my vows seriously. I have never left anyone I have promised to take care of for life. The stress of his cruelty (he made fun of my balance problems and hearing loss that came with the Ramsay Hunt Syndrome that caused the “Suicide Disease.”) and desertion made it all worse. But, after everything I had endured in my life, I was not going to let some jackass ruin the rest of my life. Crying makes the symptoms worse. Laughing makes them bearable. I stopped crying eventually and looked at my life in front of me. 

I thought I was doomed to have nothing but the pain and my dogs. Feeling supremely alone, (on the advice of my MD and some friends, and with my parents blessing, since they couldn’t help at the time) I packed my car and moved to a warmer place that would take me and my dogs.
Somewhere I could afford on my newly slashed income. After meeting some horrible people, and some true angels, something wonderful happened. 

I started doing things for others. I was getting involved helping the shut-ins in my new little community around the holidays. I walked my beloved dogs. I got out of my own head. I made some friends. Had my heart bruised a little. Went on horrible dates.  I wrote blogs about them. Writing helped me cope. Comedy and laughing still help me to this day.

 Then, just when I concluded that most men out there are after one thing–I ran into a miracle.  A strong, handsome man, who had never married, had no children and DID NOT WANT ANY, but loved them. In fact, he was studying to be an educator. Shortly after our first date, he was about to don a Clifford the Big Red Dog outfit for a school assignment. He could write and speak complete sentences and wasn’t a scoundrel! Well, not anymore, anyway. His friends have assured me he had his moments as a ladie’s man. I am glad that part of his life is behind him.

I couldn’t believe I met a man who understands me, takes care of me when needed and I take care of him whenever he needs me. I never thought I would laugh again. Boy, was I wrong.
Plus, the dogs approved.
I never thought I would trust a man again. But, I was sent a man who accepted me AS IS. He loves me, not just my “potential.” It took some soul searching, but I eventually concluded that if this amazing man can love me at my worst, to paraphrase a fake Marilyn Monroe quote, he deserves my best. I took one more chance. 

We now have a combined family of real family and cherished friends. When I am down, they are there to delightfully distract me.  Meditating in prayer helps me deal with the “mind numbing” pain. Bible study helps me put my pain in perspective. Jesus and Job had it worse.
I now live in the most peaceful place I have ever lived.
It is quiet and the pace is slower. I miss having my friends and family close by but thanks to my smartphone they are always in my pocket. Now, with Skype and video calls, we really can feel close until our next visit.
I have found a new doctor up here in the country and he is determined to help me control this pain and help restore as much of the “old Cherie” as humanly possible.My dogs loved it here when we moved. Sadly, my Yukie (the white dog pictured above) passed away suddenly in 2010. He lived his last years in a peaceful place and got to see his “mom” happy. We got “Harlan” a few months later.
One of the most surprising parts of my journey is my affinity for chickens.
I had never met a chicken before March of 2009, now I have a little flock and absolutely love raising them. I sell the few extra dozen eggs when I can to friends here in town. Their eggs make my cupcakes really special, and I give them as treats for my husband’s students.

Ironically, none of my new life would be possible, I suppose, without “The Suicide Disease.” In a way, it actually gave me a new life. 
I may have the “suicide disease” but I wouldn’t miss a minute of my life, just the way it is.
**This was written before my twin sister came down with the same illness, four years later. I am glad I am able to help her know what to expect. 😦

Happiness Loves Company, Too

Nobody started at my baby with a tortured face. I had to count my blessings. I smiled because I had him 15 months and three weeks, while there are many who don’t get that long and some who couldn’t bear children at all. So, I smiled. I cried later. “I had the rest of my life to cry, why make my baby boy upset?” I told myself. I still cry as I wander this world without him, but I laugh more than I cry now.

People have asked me, over the last 20 years how I get up in the morning while knowing that my child is dead and I can’t have any more. They expect me to be some sort of zombie or in a mental hospital. My answer to them is that I just try to make the most of my life here on Earth because my son was robbed of that opportunity. It would be an insult to his memory to not be grateful for every minute I have here, so being bitter and miserable is not an option. Poisoning my body with drugs or alcohol has never been an option in my life. I have little patience for people who do that and oddly, most of the people I knew who did that had a lot less of reason to do so than I would.Some people have asked me how I manage to be cheerful. I even had a boss of mine ask me not to be so cheerful in the morning as I was bringing him his coffee. He was a miserable, cranky, negative person but he wasn’t going to take me down with him. I kept smiling, and got a better job. Life is too short to be around people who can’t deal with cheerfulness. There is enough misery in the world. Why spread it around?It’s easy to be cheerful if you count your blessings.I learned how to count my blessings and deal with what life gives us with grace and dignity from my late Uncle, Billy Petrino. A detective for the Town of Lexington Police Department in Lexington, Massachusetts, he had a unique approach to life and work that I have tried to adopt. He died at age 56 of cancer. He worked up until a month before he died. He never lost his hair so he looked a little skinnier but he just kept going. That in and of itself was amazing and admirable.What I took away from my many talks with him was that one of the worst things one can do to another is to assume you know all about them. To think you know everything they possibly could possibly say about a subject and act bored. That kind of prejudice is corrosive. Keeping your mind and heart open to people, regardless of YOUR OWN past experiences is difficult but key to loving people the way God wants us to love.My dear uncle Billy told me that the reason he did his job so well is because he treated every one who stood in front of him as if they were his only case. As a detective, he dealt with the families of murder victims as well as people who were locked out of their car. Treating them both with the same amount of respect and patience was his key to success. The attitude that the person locked out of their car, while lucky they aren’t the family of a murder victim, still had a problem that deserved his full attention won him awards and commendations. He was just keeping his heart and mind open. He was keeping cynicism away and a smile on his face. I try to follow his example. It isn’t easy.My dad, from the time I was able to comprehend speech, told me to “count my blessings.” He told me at Christmas that there were people who had nothing and to remember how fortunate we were to have what we had. He told me that there were kids who were deaf or blind, or couldn’t walk or were in Children’s Hospital fighting cancer and to “thank God that I am healthy.”When I complained about never going anywhere in the summers, he told me to be grateful that I had a fenced-in yard with a pool because lot of kids without a yard to play in at all. When I complained that I wasn’t thin enough or tall enough, he told me I should consider myself lucky that I didn’t have a big weight problem or horrible acne, etc.. Dad ALWAYS had a answer for why I shouldn’t be complaining. Bless him.Sure, Dad’s approach flew in the face of my uncle’s (his brother) approach to life. He minimized whatever I was going through by comparing me to people going through “real problems” but he was partially right. Things can always be worse and that way of thinking has really helped me through some dark periods.Thinking “it could always be worse,” I smiled when I had a baby who was suffering from a fatal illness because he was able to be held without pain. There was a mom in my support group whose baby was in so much pain she screamed at the slightest touch, regardless of the methadone they gave her for the pain.I smiled because my baby while possessing the course facial features that are hallmarks of his disease, was still cute and cuddly and not severely deformed like the little baby in the waiting room next to us, whose skull was not fused properly at birth for some reason and whose eyes were not in the right place.Nobody started at my baby with a tortured face. I had to count my blessings. I smiled because I had him 15 months and three weeks, while there are many who don’t get that long and some who couldn’t bear children at all. So, I smiled. I cried later. “I had the rest of my life to cry, why make my baby boy upset?” I told myself. I still cry as I wander this world without him, but I laugh more than I cry now.I just kept smiling and dealing with the blows of life with a “things could be worse” attitude. Thinking of Uncle Bill, I wring happiness out of whatever situation life throws my way. Sometimes it is hard to find the happiness and blessings in certain situations but it is always there.I am still smiling because I can see, hear and think. I can smell the flowers in the summer, the crisp autumn air and the Christmasy snow smell in December. I can see the delight on my husband’s face when he sees that the dog has learned a new trick or when he has put the finishing touches one of his wonderful, homemade soul food recipes. I hear my beautiful friend Tanya’s voice on the phone, her adorable son cooing in the background. I can see and hear my mom, sister and wonderful niece on Skype. My sister and niece do artwork that I can enjoy and my mom knits me scarves and blankets, though she is legally blind. I can behold my precious sister Lauren and her culinary feats. The list of things for which to be happy goes on and on.

Shockingly, this approach really makes some people really sick.

People roll their eyes at me. They say I am too cheerful. One malcontent said she can’t bear to hear me talk. Some have even said things so hurtful that I cannot repeat them because it just spreads pain. This has been said to my face by people who are just rude and behind my back–conveyed to me by people who thought they were doing me a favor. Those people are not in my life anymore.People who are powered by negativity and cynicism tend to be especially prone to what I call, “happyphobia.”Happyphobia is the inability to be around people who have a good attitude. It is as if your happiness contributes to their misery. It a zero sum game to them. It is a horrible way to be, I’m sure. I find myself being empathetic and imagining how awful it is to be misanthropic and negative all of the time.To them, I say, “Smile.” Life is too short to waste it on being miserable. If you frown and are negative, you will only get more negativity. If you smile, count your blessings and think of the happiness in any situation, you will get more blessings and at the very least, a lot more peace.

There is Nothing New Under the Sun: Bullying

Today, I am thinking of “bullying.” I grew up in Bedford, Massachusetts. At the time, it was viewed as sort of the bastard child of Lexington and Concord as it was in the middle and not as historically significant. Now, of course, most of us who grew up there can’t afford to live there. But, back in the ‘day,” it was a fairly respectable place in which to grow up.


Hi. I am Cheryl. I also answer to “Cherie” and “Bunny”

Me, at 16
I was 16. Notice my dad had me wearing a Massachusetts Marksman Assoc. T shirt.

After decades of ups and downs, (really bad downs, at that) living in Massachusetts I decided I needed a change. I moved to Kentucky for reasons that will become clear in future blogs.

Today, I am thinking of “bullying.” I grew up in Bedford, Massachusetts. At the time, it was viewed as sort of the bastard child of Lexington and Concord as it was in the middle and not as historically significant. Now, of course, most of us who grew up there can’t afford to live there. But, back in the ‘day,” it was a fairly respectable place in which to grow up. 

We lived in the poorer section of town. My dad was a cop, which made my twin sister and I even more conspicuous than twins usually are in a small town. He stopped people speeding and emptied out their beers at the boat landing. We were called “pigs” from the time we were in 4th grade. That made our lives hard.

If that wasn’t enough, girls hated us because we were blonde, identical  and somewhat pretty and “developed”early. A girl in sixth grade called me ugly and I believed her. At the time I thought I was a troll. A jilted “boyfriend” of my sister’s who was a year ahead of us spread rumors all over  John Glenn Junior High that we were “easy.”  This made the girls happy to hate us before even meeting us. I remember all of their names. I wish I didn’t. 

Boys liked us because we looked a lot older than we were. This made the girls loathe us even more. One girl actually accused me of “stuffing my bra” and finally one day I took it off under my shirt to prove it wasn’t stuffed after she and the other girls she hung with cornered me in the bathroom in sixth grade. I remember everyone who was there. They seem to have hoped I forgot. Some are Facebook friends. I have forgiven them. 

My mother told me not to sink to their level. My Aunt told me they were jealous. Jealous of what?? I just wanted to be left alone. I didn’t look like any of Charlie’s Angels so I thought myself a beast.

Then there was the boy who liked me so much he punched me in the face when I said I liked his friend better. He cracked my cheekbone. It did wonders for my self esteem. His dad was high up in town government so nothing was done. My dad was a policeman. It made no difference.

Junior high was more of the same. Being called a ‘slut” before you know what one is was horrible. Seeing your name on the bathroom wall is something you never forget. I remember who did it and why. It made me very intimidated and withdrawn for a while.

One of the people who did this to me actually laughed about it at our 10th high school reunion. She said it was because I ‘got all of the cute boys” and that is why they gave me a hard time. I asked her if she would like to chip in for my therapy bills. She thought I was ‘SO FUNNY!” I was only half joking.

I have no idea why, but by ninth grade I was my own person and thought didn’t care about these girls anymore. I made friends with boys and briefly had one boyfriend. After that ended, I just hung with my “boy” friends and worked on cars with them. First theirs then my own. I learned about computers because in shop class, the teacher thought my time would be better spent learning how to create a database than to rebuild a lawnmower engine. I joined that class to be away from the girls who hated me. And hate, they did.

One girl put the word out that she was going to “kick my ass.” One day after school, she approached me and two friends of mine. Bullygirl decided to pick on my friend first. She grabbed her by her face and dug her nails in to her flesh. Too bad for Bullygirl that I was born with a sparring partner (my twin) and my Dad taught me how to fight. After I told her to leave my friend alone, she turned on me. She went to punch me, I ducked and proceeded to kick the living crap out of her. She went away bleeding and saying she was going to sue me.  For reasons I will never understand, she wanted to be my friend a year after that. She will be getting her own blog. 

Ironically, the person who I was sticking up for turned on me, too. She turned into Bullygirl 2 and smashed my sister’s head into a locker. Why did they never just go at me first? I lost it and mopped the floor with her, earning a suspension from high school. This girl and her older sister never let up. They keyed my car which I had just painted myself with the help of my “boy friends” and they chased us all over town in their cars.

Their mom was a local prostitute who hung out in the local hotel lounge and was crazy so she let the BullySisters do whatever they wanted. It got so bad that I had to take them to court to get a protective order. The court granted me the order and told them to stay away from me. I didn’t want anymore fights or suspensions. I just wanted to live in peace. My family was falling apart but that is a story for another blog.

My point is, that “bullying” has been around since the beginning of time and will continue if parents and teachers don’t do anything. My parents tried to help but no teachers or administrators took it seriously.

They slashed our tires. They constantly called me a slut, usually across a parking lot or hallway. One day, one of the BG‘s had her brother loosen the lug nuts on my old Camaro’s brand new rims. My “boy” friends worked at a garage and had them put on with a hydraulic thingamagig so they were definitely loosened on purpose.  After my tire fell off, thankfully I was only going 30 miles per hour, I took my Dad, the cop, to the BG’s.

When confronted, they laughed and said they did it but I couldn’t prove it.  My father was never predisposed to be on my side so he really didn’t do much. So, feeling completely alone, I got out of Bedford. It held nothing but bad memories for me. I lived with my Aunt so I could attend another school. I had one friend in Bedford and I missed her, but I needed to get away from the craziness.

Lexington was the next town over and was a much bigger place. I loved it there. The Bedford Bullygirls drove a big truck (her boyfriend’s)  over to Lexington High to key my car.  They did damage the car but thankfully, I saw them at it from my computer class and contacted the police.

They were supposed to be in school then so they got in trouble. A policeman who was friendly with my Uncle, a detective, put a stop to the nonsense. They finally left me alone. I made good friends that I still have today at Lexington High and graduated on time. How I was able to concentrate on my studies is anyone’s guess. I still have nightmares about not graduating on time.

If I had it to do over again, I would have gone to the principal and NOT engaged in fights. I hope girls today have more sympathetic teachers.


The kid who punched me: Lots of arrests. Total loser.

The girls who harassed me in elementary school? Let’s just say they have led interesting lives. Most are okay now. 

Bullygirl 1–Dead of drug overdose after several abortions and two children, one born addicted.

Bullygirl 2-Pregnant at 17. Gave birth sometime after graduation. Whereabouts unknown.

Bullygirl3/Brother: Both did jail time for drug charges. In and out of trouble with the law

Bullygirl4-who ran me off the road–dead in a wrong way crash, while driving drunk that killed an innocent man. What a legacy.

Me? I went to school after my son passed away and it took almost a decade but I got my Bachelor’s in English from UMASS Boston. Working my way through most of the time and raised lots of money for my son’s charity.  I got As for the first time in my life. I could concentrate and actually loved my classes. I relearned all of the skills I missed while being constantly anxious and harassed in high school. 

I am happily married. 

The lesson I learned is to be true to myself and God will sort out those who are evil.

And He will. That is his job, not mine.