Grief

Grief is like a nightmare you can't wake up from. On Wednesday my step-son, Louie, died at the age of 27 of complications from the muscular dystrophy he struggled with all his life. Nevertheless, it was unexpected. My dear husband has been his devoted and sole caretaker all of his life. I lived with him for almost 15 years. If you ever want to donate to a cause help the Muscular Dystrophy Association help find a cure for this horrible disease. And please stop back here in a week or two when I am able to write again.

Scars (cicatrices)

There are scars where blood once bloomed
on bodies born pure, their stories live on.

A dog engraved his teeth marks on
Laurel, a girl I knew long ago,
leaving a concave spider web
splayed on her cheek.

As a child in a hospital ward
I saw a little boy's charred skin,
his outer layer like pieces of
red crumpled paper.

Metal forceps created
a crooked mark on my husband's
sweet newborn face,
still visible decades later.

My son's six year-old leg
collided with a bicycle pedal
that left a forever grin
stamped on his shin.

Dad's leg carries
a long scar from childhood
bone infection that took
a year of his boyhood away.

There is a diagonal slash
across Helen's chest,
a betrayal of a breast
and its landmines of cancer.

My visible scars are of parts uneeded,
an ovary full of potential disease,
breast tissue that burdened my body and spirit.

Some unseen scars have
their own stories,
little demons of iniquity,
embedded with tears.

Americans with Disabilities Act - Richard Pimentel

Have you ever heard the name Richard Pimentel? I hadn't until I watched a movie called "Music Within" last week. It's an amazing and true story of a man who almost single-handedly pushed for the creation of the Americans with Disabilities Act. As a young man, Pimentel wanted to make something of himself despite a horrific childhood. He had a gift for public speaking and debate, but ended up in VietNam and came back with tinnitus so bad (from an explosion) that he couldn't hear.He found it almost impossible to go to school or find a job. He met a man, Art Honeyman, with severe cerebral palsy who was smart and making his way through a world that treated him cruely because of his disability. There's a scene in the movie where they ask them to leave a restaurant because Art was disgusting to the other customers. They refused to leave and were arrested under the "Ugly Law, a statute that prohibited public appearances of people who were unsightly. I looked at my husband and said - that was only 30 years ago, but then the movie reminded me that the ADA was not signed into law until 1990! Before that time people with disabilities could be asked to leave public places or not even have a way into them, they could be denied jobs, be discriminated against in any way! Unbelievable isn't it?
Richard Pimentel wrote "Tilting at Windmills" a disability training program designed for managers and supervisors to work with people with disabilities in 1981.
"Music Within" is a good movie and a great story of one man's success and ability to make a positive change in the world.

Michael J. Fox

I don't intend to make this blog a series of You Tube videos - but this one needs to be seen. Watch the whole thing.

Removal

Removing your existence from this world must

be normal, seem acceptable in the Hughes family.

Nicholas existed in Alaska, a professor

of fisheries and ocean sciences, far removed

from London and the sealed off room he slept in

as his mother gassed herself in the kitchen,

far removed from the poetic lifestyle of his parents.

His father so beautifully wrote of his little son's eyes as

wet jewels - the hardest substance of the purest pain,

as I fed him in his white high chair.

Was the pain frozen on that childhood day?

Or was it the day his stepmother gassed herself

taking his four year-old stepsister with her?
Was the glorification of his mother's death

the deciding factor or the notion that his father's

infidelities caused her suicidal anguish?

What made Nicholas entertain the irrevocable

thoughts before he hanged himself at age forty-seven,

removing his existence from the earth,

just as his mother and stepmother had before him.

(Nicholas Hughes, son of Sylvia Plath and Ted Hughes, died March 16, 2009)

Erasing Names

This past week it was time to do the Christmas cards. I remember a time when I actually looked forward to sitting down and writing little notes to everyone and now somehow it seems more like a chore. Maybe because with email and cell phones we are able to communicate with those we don't see often so much easier than 10-15 years ago. I went through my address book to check and see if there was anyone new to add to the list. There was not. But sadly there were five names to eliminate. Two friends and three relatives, gone from this earth, but not from my heart. What is sadder than erasing someone's name? The loss of two friends this year is still difficult for me to fathom. They were both in their fifties, so close to my age. Jeanne left two teenage children that she will never see grow up. But both friends were women of deep faith and I know they are held in God's heavenly arms now. The poem I posted last week called "To Have Love" was in part, about my thoughts for their husbands left behind and alone now. The photo is a shelf in my writing room. Three dear friends gone. Two from cancer and one from muscular dystrophy - rest in peace.

You'll Never Walk Alone

Today is the 43rd telethon for the Muscular Dystrophy Association. Jerry Lewis helped to establish this organization in 1952 and has been hosting the telethons since 1966. His efforts have raised approximately $2 billion for neuromuscular patient care and research. The International Fire Fighters are the largest single sponsor of MDA since 1954 raising over $250 million. At the end of the telethon Jerry Lewis will sing this beautiful song by Rogers and Hammerstein:

When you walk through a storm keep your head up high

And don't be afraid of the dark.

At the end of the storm is a golden sky

and the sweet silver song of a lark.

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on, walk on with hope in your heart
and you'll never walk alone.

Muscular Dystrophy Fundraiser - A Bocce Tournament

Yesterday my husband and I put on our sixth annual Bocce Tournament to raise money for the Muscular Dystrophy Association. A couple years after we moved into our house my husband said he wanted to build a regulation 80' limestone bocce court in our backyard.(see photo - before the bocce-loving throngs arrived) I'm not sure I even knew what bocce was until I fell in love with this Italian. But that's what we have in our backyard and it's provided a lot of fun for friends and family because it's a game anyone can play. The tournament has 32 teams and generally lasts around nine hours. Probably 100+ people visit our backyard during that time. We have a raffle with great donated prizes such as tickets for Major and Minor League teams, gift cards to many area restaurants, signed footballs from the Browns etc. My husband works for many weeks to make this fundraiser a success and thanks to our generous friends and family - it always is. Those people alone bring in over $4000 every year. The winners receive a coveted trophy and their name engraved on a plaque.

Then on Labor Day weekend my husband and stepson, who has Duchenne's muscular dystrophy, proudly present the check at the local station televising Jerry Lewis's Labor Day Telethon. The MDA telethon has been televised and hosted by Jerry Lewis since 1966, but Jerry has been working for and raising money for MDA since 1952. Before he became ill several years ago he would host the entire 22 hour telethon non-stop. Now he comes in at intervals and always, at the end, sings a tearful version of "You'll Never Walk Alone."

If you are not aware, there are 40 different neuro-muscular diseases that can each devastate victims and families. My friend Jacquie, who passed away in March had MD. The most famous person was Lou Gehrig, the New York Yankee for whom amyotrophic lateral sclerosis (ALS) is named after.

Muscular dystrophy is not to be confused with Multiple Sclerosis, which strangely enough, two of my family members also have now.

Anyway - it's wonderful, inspiring day and boy - ARE WE TIRED!!!

The Dichotomy of a Day

My husband may never know how much it means to me that he always takes a day off for us to celebrate our anniversary. We've gotten into the habit of spending a day riding our bikes along a beautiful wooded towpath trail that follows the remnants of the old Erie Canal. Yesterday we rode 7 miles one way, had lunch in a little town and rode the 7 miles back. The only thing hurting at the end of the day was the result of inadequate bike seats - ouch! It's quite an historic area and there are markers to teach you about the building of the canal. The photo is of one of the remnants.

The dichotomy of the day was because after we came home from such a pleasant time together, we showered and dressed and visited another funeral home. My friend Jeanne lost her 6 year battle with cancer. She left behind two teenage children and her husband, Jay. We became friends in junior high and then, in the 80's she moved next door to me. I'll never forget walking over to meet the new neighbor with a plate of brownies and Jeanne opening the door! Jeanne loved butterflies and the room where we said goodbye to her was filled with them - in the flower arrangements and decorating the collages of photographs of her life. Looking at the photos I realized that I couldn't even imagine what Jeanne looked like without a smile on her face. She loved her God and I have no doubt that Jeanne has left her cocoon and is now a beautiful butterfly.

Too Late

I just had to erase my friend Jacquie's name from the list of things I was going to do on Spring Break. Jacquie, age 55, died Friday of muscular dystrophy. She had been in and out of the hospital since October. I visited a few times, but not enough. Now it's too late. My advice - don't ever have to erase a friend from a list of things to do. Just do it. Her husband's email was entitled - Jacquie's got her wings - yes she does - and no one deserves them more.

Affliction

Despite the title of this post - I will celebrate the day. Another snow day - another Winter Wonderland outside to revel in all day. Another day at my laptop - the place I feel so comfortable at these days.

Yesterday was a difficult day. I had to work until 9PM for conferences and did not see one parent. Sad. The roads were horrible coming home. You would think when your car is only a few years old, has good tires and sand bags in the back that it would stop when you pressed on the brakes - but I always feel like I'm the only one sliding into intersections and pumping the pedal and saying nasty words to my little Rav. It was harrowing.

But the worst part of the day was that, for unknown reasons, I could barely walk yesterday. My left hip was in so much pain that I had to hobble slowly through the halls. Embarrassing. If I'd just sprained my ankle, say - I could just say - I sprained my ankle. But when everyone asked what happened - uh- I don't know!!! The two cortisone injections rejected their role and betrayed me. It's too long of a story to tell. Back to the doctor today.

Somehow I am slowly realizing how this experience is changing me, and I have hope that I am learning something. I was reading some essays by the famous French writer Simone Weil. She wrote :

Affliction is an uprooting of life, a more or less attentuated equivalent of death, made irresistibly present to the soul by the attack or immediate apprehension of physical pain. . . and nothing else has the power to chain down our thoughts.

Affliction is something specific and impossible to compare with anything else, just as nothing can convey the idea of sound to the deaf and dumb. And, as for those who have themselves been mutilated by affliction, they are in no state to help anyone at all and are almost incapable of even wishing to do so. Thus, compassion for the afflicted in an impossiblity.

THAT'S what bothers me the most. The way pain causes you to be self-absorbed and unable to be of use to anyone. Yesterday when one of my students showed up at my door during my lunch crying and kicking the wall because someone took his lunch - I had to practically crawl up the stairs and down the long hallway to investigate the problem. I wasn't as interested in solving his pain as my own. I hate that.

Weil continues: Affliction causes God to be absent for a time, more absent than a dead man, more absent than light in the utter darkness of a cell.

I think she is describing depression here and I would agree. Depression to me felt like God had abandoned me. However, I am recognizing how pain can easily lead to depression.

Affliction hardens and discourages because, like a red-hot iron, it stamps the soul to its very depths with the contempt, the disgust, and even the self-hatred and sense of guilt and defilement which crime logically should produce but actually does not.

The people you love and live with get to suffer too. As much as I try not to whine and cry, my husband has commented on my tendancy to be in bad moods these past few months. I want to say "Duh!" But then again, it seems unfair that he should have to suffer along with me. Being a man, he wants to fix it, but even the four doctors I've been to can't seem to do that - yet.

I wrote this before I read Weil, but we seem to concur:

Affliction

Pain

physical, bodily pain

grinds your spirit

scarifies your soul

harasses your plans

hounds your brain

vexes your senses.

Pain

give me morphine

give me oxycontin

give me knowledge

walking, moving

spread out my limbs

give me my life again.

Pain

give me doctor

without a damned perscription

an expert on a real body

look at me, move my parts

discover my affliction

take my insurance.

Pain

make me understand

what it's for

the reason I have this human

fallible, fragile body

what can I learn

from pain?

A Beautiful Moment, A Beautiful Family

I have an amazing and loving extended family - a whole slew of first and second cousins, most were originally from Pennsylvania and now spread out all over many states. Our parents were siblings and all of that generation is gone except for my mom and dad and my Uncle Dick. This weekend we all went to PA to celebrate his 90th birthday. Uncle Dick has Alzheimer's and is in a lovely assisted living center.

On this particular day he sat quietly at a card table and did not seem to notice the din of voices around him until someone would enter his viewing range. Then he would smile and say he was glad to see you. My cousin says "he knows we belong to him ."

My Uncle Dick has always been one of the happiest, most positive people I've ever known. He raised six children and entertained us all with music - from the piano, to the trumpet, to enthusiastic singing. One of our favorite memories as children was spending New Year's Eve at our cousin's house and hearing Uncle Dick play Auld Lang Syne on the trumpet on the front porch at midnight. The neighbors would all come out to hear it.

The party was lively and noisy as all of us cousins, our families, and some of Dick's friends enjoyed conversing around him. At certain moments during the afternoon I would watch my cousins lovingly care for his needs and attend to him with such dignity and grace.

In the midst of loud conversations and laughter two voices broke through. A man was kneeling next to my uncle with his arm around him. They were singing "I've Been Working on the Railroad" in perfect two-part harmony. Everyone stopped in silence until the long (many versed) song was through. My cousin told me that's the only song he remembers all the way through. It was a beautiful moment.

Later I thought about the man kneeling next to my uncle and the sensitivity and respect he had displayed by reaching into my uncle's memory in the best possible way. It was an act of love I hope never to forget.

Whining and Pain

Today I am wondering why God made our bodies so complicated and fragile. I am not at church right now because I have a mysterious eye problem. My eyes are swollen and red and itchy for the third day. I look even older and more haggard than usual. I went to a family event yesterday and saw cousins I see only once a year. I wanted to say to everyone - I usually don't have these ginormous bags under my eyes ! But I didn't say anything.

I'm in a lot of leg-hip pain this week (and have been for the past year) My doctor had given me cortisone shots and they didn't work. He said - there's no room for pride in medicine, and I'm just going to tell you I don't know what's wrong. He's sending me to a rhematologist. I thanked him for his honesty. It was refreshing not have another useless perscription thrown at me. I will keep this doctor.

A few years ago I had back pain that continued to worsen. I was given a number of drugs and I tried rest and home remedies with no relief. I finally went to a physical therapist. He sat me on a table, had me stretch my legs out in front of me and asked me to look at them. One was shorter than the other! He leaned me back, put his arms around my body and yanked. Presto! He'd put my dislocated pelvis back where it belonged. Most of the pain was gone immediately. The doctor I had been seeking help from at the time had never even touched me or looked at me - just given me perscriptions that never would have put my pelvis back in place. Why? How hard could that have been? I struggled unnecessarily for months.

I haven't been able to do my yoga or put in my 1-2 miles of walking a day for almost 4 months and I feel like I'm in the wrong body. I'm somewhat depressed and completely lacking energy, and yet I know I have so much to be thankful for. I know that others are in much more pain and suffering than I am. It's a spiritual struggle every day between being thankful because I can carry on, I can walk (it just hurts) and having a pity party for myself because I can't do everythingI want to do right now.

I'm supposed to believe in miracles and that God can do anything, but I know He won't zap me with healing for my myriad of ailments (there are a few more). That's not the way He works. I live in the real world and in a human, fallible, vulnerable body. He'll help me get through the day, maybe guide me to the right physicians, teach me tolerance and compassion for those that suffer more than me. Maybe I'll learn to stop feeling sorry for myself or something else good will come of it. I don't know. Maybe somewhere in the blogosphere someone will read this and know the answer and we'll become life-long friends. Thanks for reading.

Being Human

I have a long list of personal aberrations. Most are livable but annoying. Yet, one experience in disease changed me forever. I do not have it now, but I live with knowledge that my mind and body are capable of it. During a brief but significant period of my life I experienced clinical depression. Not a mild bout of the blues, but a descent into a black pit so deep that hope was a distant memory and I had no idea how to begin to start crawling out. There were months when fantasy and reality were almost indistinguishable, and the sole reason for opening my eyes in the morning was my two children.

Living in the world and not feeling anything is like being dead - except you're not. You are still in the world with people who love you, who have expectations of you, people who care but don't understand, and people who don't care and tell you to snap out of it. But you can't snap out of it any more than you can snap out of the flu or the chicken pox.

It was the worst thing and the best thing that ever happened to me. It changed me for the better. I journeyed out of the darkness to feel more human than I'd ever felt before. I knew myself better and it gave me a permanent ability to empathize with other human being's struggles.

I felt stronger as a woman knowing that, even with professional help and medication, I still had to create the will to live from deep inside me. I was still the one that gathered the massive determination it took to fully heal. I will always regret my children seeing me at my weakest, but I am also aware that they saw me get better and carry on in a new life. When crisis visits their lives, as it surely will someday, I hope they will remember and understand that there is always healing and hope.