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.

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. 😦

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.

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.