Living with the Suicide Disease

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 kicks 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 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.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 who don’t have the medicine that barely works for me (most of the time) might consider it, and that is heartbreaking. I pray for them.
I am thankful for my wonderful husband, family and friends. It hasn’t been easy. My 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 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, the loss of the “old Cherie.” Some friends have become distant, too.

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) 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.

 Then, just when I concluded that most men out there are after one thing–I ran into a miracle.  A strong handsome man, who has never married, had no children and DID NOT WANT ANY, but loved them. In fact, he was studying to be an educator. 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.

In fact,  met a wonderful 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 wonderful man can love me at my worst, to paraphrase Marilyn Monroe, 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 iPhone, they are always in my pocket. Now, with Skype, 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. 😦

Country Living vs. City Living

This a list of observations since I am not only a Yankee, I am a city girl. I live in a pretty part of Kentucky. It is peaceful but I am still in “culture shock.” I will be updating this list frequently, as events occur.

City Living: I stepped over a drunk to get to my apartment once.

Country Living: No drunks in the yard, but plenty behind the wheel of every type of vehicle known to man. Defensive driving is a survival skill.

City Living: Sometimes I couldn’t find where I parked my car.

Country Living:  I have to look behind me when backing out to make sure I don’t run over one of my chickens or the neighbor’s dog.

City Living: Rats frequented the alleys and near dumpsters.

Country Living: If you don’t get an exterminator or set bait down, mice will live inside your HOUSE. One jumped out at me when I was going for a fork. I jumped out of my skin and finally, my DIY husband admitted defeat and we called a pro.

City Living: If a domestic animal is run down by a vehicle, people are sad and might call the Public Works department so people don’t have to see the remains of the poor creature get pulverized by traffic.

Country Living: That’s what buzzards are for.

City Living: If you go 30 miles over the speed limit, you could get a very expensive ticket, raise the points on your insurance, and if you do it more than once you are in real trouble.

Country Living: What’s a speeding ticket? I see Cletis and Jimmy Joe hauling ass at about 80 mph on surface roads without a cop in sight. From the state of their vehicles, they have no job. Where they are rushing to is anybody’s guess.

City Living: Yearly inspections on your vehicle. Yearly excise taxes based on the book value of the car.

Country Living: You get your car inspected once. ONCE by someone who works in the office of your county’s registrar. Usually it’s a secretary. No mechanical inspection. I suppose they just need to make sure it has 4 wheels and doors that close. Excise tax? Here, I don’t think that would be a good revenue stream, judging by the clunkers I see on the road, including mine.

Dos and Don’ts When Someone has Lost Her Only Child

Dealing with someone who has experienced an unspeakable loss (of a baby or child of any age) is often difficult for friends and family. Here is a quick guide for dealing with those who are suffering. These are my experiences, all are true. My son died  of gM1 Gangliosidosis after 15 months and three weeks of life. 

PLEASE DON’T SAY:

  • “Are you trying to have another one?” -As if a replacement will help.
  • “What did you do to your HAIR, I HATE it!” -shouted at me  the day after my baby died, as I opened the door to a now departed relative. She had avoided me while my son was dying.  This was in response to a short, dark hair cut. My hair was not a priority at that moment. Apparently, it horrified her and she just had to let me know. In short, use your brain.
  • “Oh, I forgot. The rest of us have NO problems compared to YOURS.” -a relative’s favorite response to any attempt by me to put any problem in perspective, even if I don’t mention my late son.
  • We KNOW!” in an exasperated tone, when expressing grief or your new-found (or old) pain at attending (or refusing to attend) baby showers or infant/toddler’s birthday parties. Sadly, very close family were the worst offenders.
  • “Maybe God meant for you not to have a child . . .” (after a death of a 15 month old and many years of frustrating, failed infertility treatments.) Again, a close relative.
  • “At least you didn’t have time to become attached.”  (Blink)
  • “You are so lucky you don’t have kids!”
  • “You can have another one, can’t you?”
  • “Oh, you can’t? Why don’t you adopt!?”
  • The disease (that killed your son) only hits 1 in 100,000? You should play the lottery!” {THIS WAS SAID TWICE}
  • “Wow, you have the worst luck.”
  • Nothing. The pain of people simply dropping out of one’s life as if their child’s illness  and death is contagious to their children is horrible. 
  • “Are you still upset about that? It has been # months/years.”
  • “You really should keep your grieving private. Just between you and  your husband.” (said to someone I know)

BONUS: If a child is dying: DO NOT SAY THE FOLLOWING:

  • Have you gained weight?  – another relative. Ignoring my child, who we brought to a family function because nobody wanted to come to visit us in the city because of the parking. We had to bring our nurse and a portable oxygen pack, but really, my weight was the REAL issue.
  • If you are an MD at a teaching hospital, please don’t make guesses at the baby’s life span to your med students as if he were livestock in front of his 23 year old mother.
  • Again, if you are an MD, don’t say, in response to a missing immunization card, “it’s not like he is going to be going to kindergarten!” Dr. Lynne Karlson of New England Medical Center‘s Floating Hospital said both comments to me. I was stunned at her lack of humanity. I still am all these years later.
  • Just keep praying for a miracle. (in a tone implying that we haven’t prayed hard enough–not helpful)
  • And my personal favorite: “You should be happy you will have an angel in heaven now!”

It has been a long time, but I still bristle at the thought of those comments.

I learned that the people you THINK will stick by you might not, but God always puts someone else in your life to take his or her place. I have seen it happen over and over.

Don’t Discourage Talking About the Loss

Sometimes, people who think that they are doing the grief-stricken a favor by urging them NOT to talk about the death are thinking about themselvesTHEY don’t want to be uncomfortable so they attempt to make the one who had to bury their loved one feel guilty for sharing their feelings. If you don’t want to listen, read a blog, or look at a photo, don’t. But, keep your feelings of discomfort to yourself and thank GOD that you only had a millisecond of it, and not a lifetime.

The last thing someone dealing with grief needs is guilt about how their feelings effect YOU. It is not about you. You will be dealing with grief someday yourself so try a little empathy.

Sometimes just acknowledging that the grieving woman is having a bad day is enough. Birthdays, death anniversaries, holidays are often very hard for someone who has lost a child. Some people go overboard, but most don’t. Tact and kindness go a long way here.

If you are dealing with grief yourself and don’t like the way someone else is dealing with their grief, recognize that people grieve differently and keep your negative comments to yourself.

DO SAY:

The best thing to say in almost all situations like this is “I am so sorry.”  A hug is nice, too. Or, if you are so inclined, “. . .tell me about your son/daughter.”  It won’t make your friend worse. If she cannot talk about it, she won’t. More likely, she will be delighted to tell you about her child. One of the worst things about losing a child is the fear that he or she will be forgotten, even to the parent herself. Talking about it at times, helps.

How are you getting along? If you need to talk, I’m here.

And mean it. Like almost everything in nature, feelings need to be let out. If they don’t, they fester and explode or worse, back up and become poison. Listen to your friend. Ask her how she is doing physically. Encourage her to take care of herself. Sometimes, grieving can lead to depression, drug or alcohol abuse, or even suicidal thoughts.

Keep an eye on your friend. You can kindly steer the grief-stricken friend to talk about other things if you think she is stuck. Or maybe get her a book like How to Go On Living When Someone You Love Dies, by Therese Rando. 

Isolation makes everything worse. If you care, listen. It will do wonders. Invite your friend to do things to get her out of the house. Scrapbook parties, exercise classes, shopping, comedic movies, walking your dogs–anything is better than sitting in an empty house.

Keep asking. Sometimes she won’t accept an invite. But she will come around. Don’t give up.

Take it from someone who knows. Losing friends along with a child just adds to the tragedy. Don’t let it happen.

I love you. Everyone needs to hear that. ❤

Happiness Loves Company, Too

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

REPOSTING FOR BULLYING AWARENESS

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.

Epilogue:

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.


Living with the Suicide Disease

Trigeminal Neuralgia-Living with the Suicide Disease.

19 Chickens and Counting

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 kicks 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…

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A House of My Own – Sandra Cisneros

One of my favorite authors. One of my favorite books. The House on Mango Street, by Sandra Cisneros. I am hearing the little girl’s voice in my head.

A House of my own.

Not a flat. Not an apartment in back. Not a man’s house. Not a Daddy’s. A house all my own. With my porch and my pillow, my pretty purple petunias. My books and my stories. My two shoes waiting beside the bed. nobody to shake a stick at. nobody’s garbage to pick up after. Only a house as quiet as snow, a space for myself to go, clean as paper before the poem.

The Last Thanksgiving (from the archive)

The Last Thanksgiving

Current mood:thankful

This time of year brings back very good and very bad memories for me. I try to concentrate on the good. Sometimes the bad just creeps in like horrible background music at an otherwise pleasant brunch.


Thanksgiving that year was supposed to be spent at the home of my then-husband’s employer. He was in the radio industry and announcers at that particular radio station were close friends. He acted as if there was an unwritten rule that if the boss invites you to his second home in western Massachusetts, you went. There was no such rule.
But this was to be our son’s last Thanksgiving. I was sure of it.
Our son, who for the year since his first Thanksgiving struggled with the basic functions of living, was not doing well. MRI reports showed that the disease we were told he had when he was two months of age was getting worse.
I insisted that we stay home. Our once beautuful but now crowded apartment would be safer for Jamie than the two hour car ride and cold, lake front house. To that my then-husband said, “Just because his life is ending does not mean mine is.”
I stayed home (after some tears) and he left. I invited my sister and friend Flo to come spend the day with us. I made a turkey and we took turns taking care of Jamie. A nurse who was scheduled to come bailed out on us but we didn’t mind. Another nurse who cared about Jamie stopped by our little Boston condo to say “Happy Thanksgiving” to him and give him a kiss.
He had just gotten over a respiratory infection. He was actually feeling a little better that day. We sang to him, held him and read to him, in between suctioning and respiratory therapy.
I said a prayer. I thanked God that I got to be with him that day and that his eyes were open and he was responsive.
The few days that followed were not so good. He was increasingly fussy and restless and his respirations were different. Jamie perked up immediately when his father finally came home that Sunday. Jamie was 15 months old and had distinct preferences in the people around him. He missed his Dad. His father’s voice always made him look or smile, when he did smile.
I don’t know how I hid my hurt or resentment but I just did. I knew something was wrong. Nobody ever believed my instincts before my son was born but it was different now. My instincts were always right and nobody wanted me to be right, and I can’t blame them. My son was living his last days on earth. I knew it. If Jamie’s father had believed me and not dismissed me as ‘melodramatic” he would have been there, with his wife and son, saying thank you to God for the blessings we had and spending 4 precious days with his son. I knew he would be sorry for going to his boss’ house. My friends told me that I am not responsible for his actions and what were to be his regrets. Still, I felt to blame.
Jamie died 4 days later.
Thanksgiving has never been the same since. I still thank God for my blessings but this time of year cuts through me like the cold Boston wind off of the harbor. I miss him. That was one of the two best Thankgivings I ever had because I had my son with me.

Now, the chill wind reminds me of funeral flowers and burying my 15 month old child in warm clothes in the hard earth of Westview Cemetery in my hometown of Lexington. I try to think of all of the fun I had with him but November will always bring memories of the kindness of strangers, the tears, the loss. Going home the night of his memorial service and crying like babies, my husband and I, next to the empty crib.

It is many years into forever and I still remember every inch of him. His beautiful blue eyes, his golden hair. His voice is always with me. And for that, regardless of the pain, I am thankful.
 

iF u rItE lIk tHiS u lOoK sToOpId

I am addressing a pet peeve. It is something we all do now and then but I think we should clean up our acts because it is making reading a nightmare.
A run-in with someone who types exactly the way she talks reminded me of this topic. Also, there is a blogger looking for a book deal who types as if he went to the Chris Rock school of grammar. That might work at the Improv but it does not translate to the page. “no whut i iz sayin?”

We all do typos. It is unavoidable. That is NOT what I am talking about. Am I the only one who tires of trying to read blogs and/or comments written phonetically?

Am I the only one who thinks it is a form of hostility to make blogs almost unreadable? Text message and street talk does not belong in any piece of writing that hopes to be taken seriously.

Replacing the word “women” for “bit*hes” and “men” with “nigga” has come back with a vengeance. Among all races.

Can anyone honestly say they prefer trying to wade through filthy words in an effort to wring some sense out of what the “writer” has written?

In the year since we elected the first black president you would think something would change.*Update: President Obama would call you a jackass!

And what the hell happened to little connector words like, “is” and “are”? This is from a blog I read last year– It is a response by the blogger to someone who said something rather dumb. Are you ready?

“u stupid”

But this person wants people to read a BOOK written like that?

It doesn’t show any kind of credibility to write like you aren’t familiar with the language. You aren’t “tough.” You are just ignorant and have contempt for your readers.

How can you expect to gain the respect of your readers if you present your ideas like you haven’t passed second grade?
u tnk ppl can undastand ths? SRY
I’m not a perfect writer but try to type so anyone reading it can understand my words. “People understand me” not “ppl’undastnd me”.
Just in case the offenders can’t understand me. Let me break it down:
Allz I sayin iz u rite lk this u hella stoopid
PSSST Only cute little kitties can get away with writing like this…

I am sure someone will be offended and call me a racist or worse. To them I say:

What? I don’t understand? I am a “cracker???” Who duddnt undastan?

Um… how about…

NO?

See? Spelling DOES count.

And remember WORDS ARE IMPORTANT!

Am I on glue? Is there anyone you subscribe to who writes blogs like this?
WHY DO YOU READ THAT GARBAGE?
Do tell.

Me, Who?

This is a look back. My life today is wonderful and I am grateful to God for every day.

It’s not easy to know what is true for you or me
at twenty-two, my age. But I guess I’m what
I feel and see and hear, Harlem, I hear you:
hear you, hear me—we two—you, me, talk on this page.
(I hear New York too.) Me—who?
—Langston Hughes, “Theme for English B”

I read those words as a young woman, in college for the first time at around twenty three years of age. I was too old to be in college, I thought.  My 15 month old son had just died after a lengthy, fatal illness. I didn’t fit in anywhere. The question, “Me—who?” was one I was asking almost every day.

I was definitely a daughter, sister, niece, granddaughter and friend. But the question didn’t go away.

There was a reason I questioned my identity so much just then. My sense of self was damaged from the ordeal of caring for and losing a precious baby. I was unsure if my husband wanted any more children and it was unclear by my history of infertility if I could even have another child even if he wanted one. I wasn’t even the same woman he married. I was stronger. Fearless in someways but scared of more loss but really, what could be worse than losing your child? I found out. Losing your child and your husband within a few years of each other.

Was I still a mother? I was no longer a wife. Would I ever be a mother or wife again?

I was every woman’s worst nightmare. I was happily married, gave birth to a beautiful baby boy and even though he looked perfect, he had a fatal disease that took his life. Worse still, it was genetic between my husband and me. Meaning, if he met a woman on the street and had a child with her, he would have an almost 100% chance of having a healthy child with her.

And he did just that within a few short years after I read the question, Me—who? I was replaced utterly. She even worked at my old job. Had a healthy child for the man I once adored completely. The man whose child I bore. My heart broke. I was a failure as a woman in that man’s eyes and I feared, the eyes of those closest to me and even strangers on the street. Friends chose their sides. More loss. I rallied and made a comeback but I was hollow. Nothing I was doing then made any sense until I finished college.

It took me years to heal.

Am I still a mother? Before you say, “of course,” think about it. You are sitting with a bunch of women who are chatting about (complaining about,usually) their children and the subject of childbirth comes up. Someone describes a situation you encountered in your labor and delivery but do you share your story? Or do you become quiet because you don’t want them to ask you the typical questions such as, “how old are your children?” or “how many do you have?” You don’t want to see their horrified or shocked reactions to your truth. So you stay quiet. You are a mother in secret.

Then when someone learns you had a child who died and your husband left you for someone he worked with it is awkward. People so don’t want to be you they avoid you. They don’t want that fate!
Nobody says, “when I am a little girl I want to bury my only child and have a man I love grow away from me and leave.” It can be a very lonely place. I am someone nobody wants to be. Ever.

But, I don’t let it get to me. I am my son’s mother certainly and my identity has been shaped by my son’s birth just as surely as any other woman, but people don’t want me to own that part of myself. It makes them uncomfortable. They want me to move on. They want a tidy ending for me. It makes them angry at me at times. It sounds kind of mean but it happens.

In a way I got my own happy ending. I am grateful to God that I finally found a man who loves me even though I cannot bear children.  He actually just wants me. So, the answer to “Me, who?’ became clearer.  But the “mother” question nags at me.

So, what am I to do?

I pretend that I am just a childless woman who has dogs, a cat, chickens and a loving husband. The mother part of me is still there, but not doing anything, like an old, rusted car in the yard.