Friday, July 31, 2009

Exploring the Amazon

Many months ago, someone with a great deal of common sense suggested that I get an over-bed table to make it easier to do things when I am resting in bed. Make my life easier. Hmmmm, what a concept. What would I want to do that for?!

Naturally, I resisted. First of all, I despise the fact that my body forces me to rest. So to get back at it, I make things more challenging. HAH! So there!

Secondly, just what I freaking need, a hospital table (which, I will point out, is NOT what this person suggested)!!!! YUCK! If you have ever worked in a hospital, especially if you have ever been a nursing student, you cannot see a hospital table without seeing emesis basins, body washing equipment, equipment equipment, blecch! In other words, things that you don’t ever want to see in your own personal bedroom.

However, the reality is that medical supplies are making a slow but relentless march on my home. Canes, a wheelchair, a shower seat, a raised toilet seat. And I actually use all this stuff.

I was always the Princess and the Pea type. If there was so much as a grain of sand in my bed, I was flailing all over the place in misery, looking for the culprit. I NEVER ate in bed. Breakfast in bed? Shudder!

But now I was overturning entire meals on my sheets. So when I spilled maple syrup on my laptop (don’t ask; it was for, um, medicinal purposes, yeah, that’s it…), I realized it probably was time to think about something that would make me more sanitary, if not more comfortable. You know, the thing someone else had suggested months ago. Nothing is ever a good idea unless it is your idea, I always say. Now that it is my idea, I am more tolerant.

I started poking around on line, expecting to be depressed and horrified. Actually, I was looking forward to being depressed and horrified. And I was not disappointed.

The most expansive site turned out to be the real shocker: who knew the stuff that you could buy on!?! Including, ahem, laptop tables. That just happen to go over your bed. But the other stuff!!!! They are not just your father’s books anymore.

I never fully appreciated what a scary place Amazon could be. Although now that I have typed that, well, hellllooo, it’s the Amazon!!

I also bought a foam wedge on the site to elevate my poor swollen legs. Perusing each page, I discover that Amazon has the ever lovely “Customers who bought this product also bought…” feature. Is that because we all have ‘LEMMINGS’ tattooed on our foreheads in invisible ink?

After reading a few examples, I have decided I never, never, never want to know this information. Because interestingly enough (or frighteningly enough) people who 'bought this item' (the foam wedge) also purchased a kitchen counter compost bucket, a baseball cap washer, Cast Iron Cooking for Dummies (more ‘who knew’?!?!), a camera, a set of baby stretchies, Formula 303 Maximum Strength Natural Relaxer and..."Beowulf".

They were also interested in other, more personal products. Such as The Self Wipe.

To me, the appendage holding that device appears rather...aggressive. And really determined. But maybe I just have issues. Looking at the photo, I am not quite sure if that arm looks as though it is about to clean my bum or shove something up it. lol lol

All I can say today is God help me from ever having any such need for any such implement.

More recent adventures to follow soon!


Tuesday, July 21, 2009


I always forget my e-mail readers do not get the same attachments as other recipients! Sorry about that!

Because I know your life just would not have been as full without it, lol, here is the little video I did for my son's birthday.

Thank you for subscribing to my blog. :)


My Sweet Baby James

I was 23 years old when I had my second precious baby, a beautiful and sensitive little boy. We named him James Dennis for my beloved Grandfather, James, for his dad, Dennis, and naturally, because we were 23, for James Taylor's Sweet Baby James.

I was so happy! I now had two adorable bundles of perpetual motion, both so delightful and loving that sometimes it took my breath away.

My sweet baby James had a birthday last week. Because I couldn't get it just the way I wanted it, the little video I was making for him took me over ten days!! YIKES! So it is late and I am so sorry Jamie, because I believe it matters for these things to be on time. (We called James Jamie for short until one day he came home from kindergarten and firmly declared Jamie was a girl's name and he would be called James henceforth. And so has he been. :) )

At any rate, here is a tiny glimpse of the joy and fun you have brought to my life over these past 31 years. Thank you, thank you for being you.

Friday, July 17, 2009

Another Day In the Life

I have missed everybody so much, but I have been under the covers the bed the floorboards the weather. Maybe you should find a blog written by someone healthier?


I was only being polite. Sheesh. What would I do without you guys?!?!

In addition to not feeling well, my laptop hard drive crashed and none of my work is retrievable.

Let me say that again, because it wasn’t quite gut-wrenchingly painful enough the first time: none of my work is retrievable.

But Marie, you are saying, surely you backed up your files?

Crickets. Crickets. Crickets.

That would be a big fat no. All my writing is gone. Work that I owed someone I do freelance writing for is gone. Everything is gone.

I haven’t told my freelance employer yet. What an excuse. “I haven't been well. Oh, and my hard drive crashed so your work is all gone.” I might as well say the dog ate my computer.


I did have several lovely moments today.

I was even inspired to venture out. And of course, a 'venture' for anyone else is an 'AD-venture' for me.

Went to the ATM at my new bank. Couldn't reach the machine. Backed up and pulled up, still couldn't reach. Backed up and pulled up till my tires were rubbing the curb. Still couldn’t reach. Undid my seat belt. STILL couldn’t reach. Saying *&^%&#@#$ did not miraculously make my arms longer. Opened the car door and leaned as far as I could. Eureka!

Fed my card in with my fingertips. Pressed the touch pad for ‘Fast Cash’ or whatever. Got the main menu instead. No big deal. Tapped in $80.00. Little message popped up “insufficient funds for that amount”. WHAT?!?! No way.

My card got spat out at me. Ok, there is no way that is correct. Fed my card back in to check my balance. Accidentaly hit the Spanish button. Tip: Yelling “No Habla Espanol” at an ATM will be ineffective.

The card gets spit out at me again. I am not leaving without money, if I have to beat the thing with my cane. Which I know will only get me arrested, but I am irrational at this point.

And please remember during this whole thing, I am hanging out of my open car door.

Start over again. Push the card back in with the very tippy’s of my fingers, because I can still barely reach. Very carefully do not hit “Spanish”. Hit “Balance”. And voila, there is, well not exactly millions, but substantially more than $80.00. I would tell you exactly how much, but I don’t want to make you jealous.

Just kidding.

I am gifted with a bonus round of an opportunity to make another choice and actually withdraw some of my millions pennies. To be on the safe side, this time I type in $60.00. And what do you know, out pops $60.00! I now know what the problem was.

The ATM is actually my father!!!

Sorry Dad, I know I didn’t really need that extra 20.

By the time I retrieve my card and my money, put back on my seat belt, put my money and card in my wallet and closed the car door, I was freaking panting with exhaustion.

Now I adore you, My Beloved Therapist. But do you see why I don’t go out more often?!?! It is an ordeal just to shake down an ATM for my own 60 bucks.

I am going to put my feet up and relax for the rest of the night. I guaranteed the relaxing part by washing down my evening Oxycontin with a great big glass of cheap crappy pink wine.


Oh. This is dangerous some of you are saying?

Crickets. Crickets. Crickets.

Here is my musical accompaniment for my banking adventure:

And here is the version for all of you who get my posts through e-mail(thank you for that, by the way; xoxo):


Wednesday, July 1, 2009

Suffering No More, Safe At Home

Last winter I attended an Evensong service at my beloved Parish, Trinity Church, Asbury Park (please follow the link for more information about our loving and dynamic congregation). Our Assisting Ecumenical Pastor, Rev. Bill Forbes told a marvelous parable about suffering. I asked him if I could reference it and he generously e-mailed me his sermon transcript.

Rev. Forbes knew about suffering. He had been battling pancreatic cancer for the past five years. Yesterday, his suffering ending and he went home to his Father's arms.

He was an ebullient fixture at Trinity since he and his wife found us several years ago upon their retirement to Ocean Grove. Now mind you, Trinity is an Episcopal Church and Rev. Forbes was a Presbyterian minister. But, as so many do, they fell in love the minute they walked through our doors. He was fond of describing Trinity, a haven of diversity, as "God's Great Experiment. A place where everyone is truly welcome, even a Presbyterian!"

As someone who is living with a chronic illness, I was inspired by the humility and grace he demonstrated in his own journey through uncertainty. Today in one of several published tributes to him, I noted this quote. Rev. Forbes had written, in the summer of 2008, “None of us knows how many days we will be granted. As you look into the mirror each and every day, take time to marvel that you have been created in the image of God. Count your blessings often…Share yourself abundantly with those who need encouragement, hope, and care…Keep that twinkle in your eye and help the world learn to laugh ... May God continue to bless you and keep you as you claim the gift of life each day!”

That really says it all. I am grateful to have known him.

Here is part of my post from last year:

Evensong this past Sunday was a gift of tranquility and grace. Candle lit, with the voices of dozens of guest choristers resounding through our century old church, it was beautiful physically and spiritually.

Our parish’s Assisting Ecumenical Priest, Rev. William Forbes, delivered a moving homily and related this parable:

There was a woman whose happiness was shattered by a great and sudden sorrow. She was torn apart by the death of her only brother, a fine man, who died suddenly in the prime of his life. In her anguish she cried out, “O God, why?” But there was no answer—only silence. She couldn’t live with the silence and she decided that she must go in search of an answer for herself. She thought that she would seek the wise counsel of the holy one who lived in the uncharted wilderness. And so she set out on her journey. She hadn’t gone too far when she came upon an old man sitting alone on a bench beside the road. He was weeping. “Why do you weep, my friend?” said the woman as she paused next to him.

“I have suffered a terrible loss,” he replied. “I have not enjoyed good health for some time now, but the joy and meaning of my life was my dear wife and, unexpectedly she has now died and my heart is broken. I don’t know if I can bear such pain.”

“I, too, have suffered a great loss,” said the woman. “Tell me, do you know why God allows such things to happen?”

He replied, “Some of my friends tell me that I am suffering for my own misdeeds. ‘God is just,’ they say, so my loss must be what I deserve.”

“Do you believe that?” asked the woman. “No, I do not. . .” he said.

“Nor do I,” said the woman. “Come, join me in my search for truth.” And, she took him gently by the arm and they went down the road until they came upon a man who seemed to be wandering aimlessly. “Come, walk with us,” said the pair.

“You will not find me to be very good company. My heart is heavy because I have suffered a great loss,” said the stranger. “And what is that?” asked the old man and the woman together. “My wife, who gave purpose to my life, has left me for another and I am alone in the world.”

“That is a sad and great loss,” said the old man. “Have you found meaning in your pain?” “My friends said that God is wiser than I and must have done this thing to make me stronger.” “Do you believe that?” asked the woman. “I try, but I cannot.” he said.

“Then come with us and let us seek answers together.” And so he joined them and they continued until they came upon a young woman sitting in front of a small cottage. She held her head in her hands and they could hear her sobbing. “Why do you weep?” they asked together.

“My baby has died,” she said. “She was only three months old. She was ill from birth and now my arms will never hold her again, nor will my eyes see her grown up.”

“We will weep with you,” said the woman. “Tell us please, has God revealed to you why we must bear so much pain in life?”

“No. . .my husband says that there can be no God in a world where babies die. He says everything happens by chance and that faith is only for fools.”

“Do you believe that?” they asked.

“I don’t want to. . .” and her voice trailed off.

“Then come with us and we will seek answers together from the holy and wise one.” Together they walked for a very long time. At twilight they reached a bridge. On the other side of the water they could see the figure of the holy one coming toward them. He was clothed in light. They were frightened and they covered their eyes. They wanted to run away, but as they uncovered their eyes and the light grew slightly less bright, and they beheld a face as care-worn as their own. It was a face that had seen as much as life offers anyone. . .

“You have come a long way. What is it you seek?” he asked.

“We seek the truth of suffering. Why does God visit such tragedies upon his children?” There was no reply. They studied his face and drew back as they saw tears running down his cheeks. At length he spoke. . “Forgive me. My heart is heavy, for I am bearing much sadness. I weep for one who has lost a brother; for a mother and father who have lost a child. I grieve for a love which once delighted but is now over. I weep for a love-filled marriage that lasted for many years and is now ended by the death of a beloved wife.”

As these words were spoken, they were all moved with an overwhelming sense of compassion. The woman took the arm of the holy man. The young woman came forward to wipe the tears from his cheeks. The old man grasped his hand tightly and the younger man put his arm around his shoulders.

The woman asked, “Why do these things happen?” He said, “God’s dominion is the dominion of the heart. There pain cannot be prevented. But it can be healed.”

“But what is the purpose of suffering?” said the old man.

“It has no purpose,” said the wise one, “it can only be endured.”

“How can we endure it?” asked the young mother.

“Only by sharing it,” was the reply.

“Show us how,” said the young man.

“This I have done. . .” He said no more and suddenly, he was gone. The woman looked up and saw that they were holding on to one another and caring for each other.

We all experience suffering in our lives, some big, some small, some that takes our breath away with its randomness and cruelty and unfairness.

But one redeeming feature of the pain we endure is our connection with others. That is why I am happy you are here and reading these words. I need your support on this road and I hope you are feeling mine.

Thank you Rev. Forbes for your generosity in sharing this poignant message of wisdom and comfort.

Amen to that. Thank you Rev. Forbes.


Wonderful, Wonderful

I know I am wont to be a teensy should I put it? Ok, hyperbolic. I have taken inventory and honestly admitted on my MS message board that my current hobby is...histrionics.


Hey, it's a very entertaining hobby. True, it can be tiresome, I mean tiring, but it has lots of lovely rewards like attention and, occasionally, laughs. There is almost nothing I won't do for a laugh, sad to say.

So today I went to see Dr. Wonderful for a follow-up visit.


I am so used to being in unrelenting pain, that I had run out of ways to even describe it. Except to say that I am terrified I will have this for the rest of my life. I was able to say that to him today, hoping I wouldn't cry. Yes, gentle readers, I did one of these:


But he looked at my range of motion and read the report from Chris, Physical Therapist Extraordinaire and he was...encouraging!!! He totally got it about the pain and renewed without hesitation the medication that keeps me from chewing my arm off. He encouraged me not to give up and to keep up with the good PT work.



I just have one more question...Doctor, will I ever play the violin again?


I had to add this after the fact because Johnny Mathis is, well, wonderful, and the video is so wonderfully awful it made me laugh.

And of course, I never was able to play the violin, so that was funny. Right? Ummm...right?