Monday, December 22, 2008

Thanks and No Thanks

While I have been in my funk and not keeping up my blog, I have actually been blessed with many things. Primarily, the blessings have taken the guise of people, so many people, who have expressed love and encouragement to me.

There have also been things that have been kind of crappy.

So I have made lists of each.

Thankful for:

My friend Christine. She has done things like bring me books when I was in the hospital and even my kids didn’t come visit me. She makes me laugh. She tells me I am wonderful. She introduced me to chocolate peanut butter pie. Oh wait, I am mad about that last one. But I still am grateful for Christine.

My sister, who I might go for weeks without seeing or speaking to, but we will start in mid-sentence where our last conversation ended. She knows. She gets it. I am glad she is my sister.

For Jane. Jane is a brilliant and hilarious writer from England. She writes a shriekingly funny blog, which I love, and she writes for the BBC, which makes me dead jealous. Jane threatened me with [her] nudity if I didn’t start writing again. However, Jane dear, you forget about the picture of you standing behind the Prehistoric Woman picture board. I am so stupid, I didn’t realize it was a picture board and thought it was actually you, topless and dressed in furry rags. Right. In public, standing next to your husband and two of your children. Never mind how scary it is that I didn’t give it a second thought and considered you more brave than weird. My point is I already thought I had seen you naked. So that’s not much a threat now, is it Jane? You will have to come up with something better than that.

For chocolate peanut butter pie. Oh wait, I am mad about that one.

For my blog readers, who never give up on me and leave wonderful, warm, encouraging comments.

For my MS board friends, who never give up on me and say rude things that make me laugh my ass off.

For Cathy, who never gives up on me. Period.

For Trinity and my friends there, especially Michael, Bill and Dell, who never give up on me.

Dr. Wonderful, for not giving up on me, for actually sending a hand written note when I missed a follow-up appointment for my shoulder.

Dr. H, for not giving up on me even though I question everything.

Dr. B. for always letting me talk and acting like he is completely sympathetic even though he probably thinks I am a total Fruit Loop. For not giving up on me after all these years.

Hmmmm, I am sensing a pattern here.

Have I mentioned chocolate peanut butter pie?

So where was I…oh, right, the shitty stuff. It seems churlish to list bad things, but I will anyway, because that is just the kind of ingrate I am. lol (Oh, another thankful for: Barb, because she loves it when I say ‘churlish’.)

Not thankful for:

For a person dying last month from an infection related to the medicine I take to treat MS.

You know what? That’s enough not to be thankful for.

I’ll bet they weren’t too thrilled about it themselves.


Many, many truly humble thanks to those of you who have kept coming back even when I didn’t.

Monday, December 15, 2008

If All of Us Got Together…

Every morning I shuffle out of my bedroom, into the kitchen and I feed my little dog and two cats. It is a ritual, sometimes comical, sometimes wearing. The cats cry and wind around my legs as though they haven’t eaten in decades. The dog shadows my every step, from the bedroom, to the kitchen, to the sink to fill the kettle, to the stove, to the cupboard, to the pet dishes, to contented munching. Then I have my tea and my breakfast.

Despite the ups and downs, well, actually, downs and downs, of my recent life, none of us, not me, not my children, not my animals, have ever been hungry.

But for people in close proximity to my home, perhaps even right next door, hunger is a very real fact of everyday life.

My church, Trinity Church in Asbury Park, has had a food pantry for more than thirteen years. It started when Asbury was a wasteland and the neighborhood surrounding the church was desperate and marginalized. The pantry continues to operate three days a week and has always prided itself on having no means testing or other such restrictions. There has never been a ‘deserving poor’ versus ‘undeserving poor’. Hungry was hungry.

The food that stocks our Pantry comes from several sources, from parish donations, from cash donations, but most importantly, from the Monmouth and Ocean Counties Foodbank. This post is a plea to help save that organization and, consequently, to feed our quietly suffering neighbors. I and over 100 other New Jersey bloggers are dedicating today to the “We Can’t Let This Bank Fail” campaign.

Our economy is facing the worst crisis since the Great Depression. More families everyday are finding one or both parents out of work. People are without jobs, and food, who never, ever imagined they could face such a predicament. Yet just when the need for food at the Foodbank is the greatest, the resources are at their lowest.

Kathleen DiChiara states it simply, but her one comment says it all: if all of us get together, we can keep the Foodbank supplies at needed levels.

There are so many ways to make a difference, some of them as effortless as tearing off one of those Check Out Hunger coupons at the supermarket.

The website for the Community Foodbank of New Jersey has an incredible amount of information about this silent crisis. Here are some ideas that you can act on:

• Start a food drive at your workplace, church or school.
• Engage your children, have them help you pick out and deliver non-perishables. You are raising responsible human beings and helping your neighbors at the same time.
• Donate money directly to the Foodbank. Even a little bit helps.
• Volunteer to help out at the Foodbank if your resources don’t stretch to donations. Again, it is a great way to help your children understand the value of giving back to our community.

If you can’t donate and you are unable to volunteer, pray for everyone involved: for our new administration, that they will guide us out of this crisis; for those who are struggling, that they will stay strong and not despair; for those who are serving, that they will find peace and gratification in helping their fellow New Jerseyans.

Here are some website resources, for you to help or seek help:

The Community Foodbank of New Jersey:

Trinity Church, Asbury Park:

New Jersey Hunger Prevention Advisory Board:

NJ Helps (free and private):

And here is the roster of incredibly generous and talented bloggers taking part today to raise awareness (brava to Debbie Smith of for pulling this together!!):

3) Jersey Girl Cooks
4) Simply Sable
5) John and Lisa are eating in South Jersey
6) Padma's Kitchen
7) Chefdruck
8) Life Lightly Salted
9) My Italian Grandmother
10) Cook Appeal
11) Crotchety Old Man Yells at Cars
12) Mommy Vents
13) This Full House
14) Paper Bridges
15) Motherhood Avenue
16) The Kamienski Chronicles
17) Down the Shore with Jen
18) Fits and Giggles
19) House Hubbies Home Cooking
20) Nourish Ourselves
23) Off the broiler
24) Mrs. Mo’s New Jersey Baby
28) Savy Source Newark
29) Momlogic New Jersey
33) Best of Roxy
34) Citizen
36) Jersey Beat
37) Pop Vulture Phil
41) Mike Halfacres Blog
42) Somerset08873
43) Family, Friends and Food
47) New Jersey Real Estate Report
49) More Monmouth Musings
50) Man of Infirmity
51) Another Delco Guy in South Jersey
53) Average Noone
54) Cleary’s Notebook
55) Welcome to my Planet
56) The Center of New Jersey Life
57) Sharon’s Food Blog
58) Morristown, Chatham, Summit, and Madison NJ Real Estate
59) Midtown Direct Real Estate News
60) New Jersey Real Estate
63) The Ridgewood Blog
64) Book a Week with Jen
65) Banannie
67) Matawan Advocate
68) Take Back the Kitchen
69) The Joy of Toast
70) Route 55
71) Montclair
72) SaveJersey
73) Stompbox
74) Joe the Blogger
75) Environmental Republican
76) Stacey Snacks
77) Subversive Garden
78) New Jersey Pathfinder
79) Cooking With Friends Blog
80) Triple Venti
81) Read All About It
82) Rich Lee on Media
83) Likelihood of Success
84) Cape Cuisine
85) The Business At Hand
86) NewJerseyTaxRevolution
87) Figmentations
88) MiddletownMike
89) Caviar and Codfish
90) A Day in the Life
91) Mack’s Journey Through Life
92) Alice’s Restaurant
93) Tiger Hawk
94)Politics Patrol, The Bob Ingle Blog
95) The Food Chain
96) Henson’s Hell
97) Cranbury Conservative
98) Baristanet
99) New Jersey: Politics Unusual
100) Jersey Shore Blog
101) Plainfield Today
102) Beacon Bulletin
103) Journal Square Jersey City 07306

Wednesday, November 26, 2008

Evil. Again.

My dear friend Manju (a frequent commentator here and the writer of "Of Cabbages and Kings" blog, link to the right) is a resident of Mumbai, where today there has been yet another hideous, pointless theft of innocent lives. The terror continues for the hostages and the citizens of Mumbai.

Manju says she has been glued to the television all day. It is the middle of the night there. She is home and safe. For now. Her heartbroken and heartbreaking words: "In one day Mumbai seems to have gone from being a commercial centre to pure anarchy."

If it is your belief system, please pray for Manju and her family. For the residents of Mumbai and India. For all of us in this fragile world.

If it is not your belief, then please at least keep them in your thoughts and hearts.

Be safe Manju. We love you.

Friday, November 21, 2008

In The Depths

I unexpectedly slid into a wicked black hole a few weeks ago. Awfully dark and terribly deep. And silly me, there I wallowed, remembering hardly any of the tools I had on me to get back up.

Thank you to those of you who have reached in to help haul me out. I am more grateful than you can ever know.

In maritime/hydrographic use, depth means the vertical distance from the plane of the hydrographic datum to the bed of the sea, lake or river.

ha ha ha ha ha ha ha ha ha ha ha ha

What the heck am I depressed about?!?! At least I never, ever have to understand what that means.

I am working on some posts, so I will be back to what passes for normal for me soon. Fingers crossed. :)

Wednesday, November 5, 2008

God Bless America

For the first time in a very long time, I am proud to be an American.

Barack Obama, with his dignity, intelligence and stature, will now be the face of leadership for the United States. A face that represents so much of our rich, cross-cultural society. A face that doesn’t wear a vacuous smirk. A face that reflects grave comprehension of the pain and fear our citizens are experiencing in these terrible times. A face that had no advantages apart from brains and democracy to lead him to the White House.

John McCain is clearly a good and brave man. As Obama said last night, McCain has experienced horrors that none of could us imagine and few of us could endure unscathed. McCain was gracious and generous in his concession speech, markedly exhibiting distaste and disapproval when some of his audience contemptuously booed at the mention of their new president’s name. I believe him in his pledge that he will do everything in his power to help Obama as he leads our country.

I want to believe McCain, because working together is the only way we are going to be able to move forward. Working together, our elected officials can restore the good name and credibility of the United States. Together they can create an effective machine of peace and a model of honorable and responsible leadership.

As Helen Keller once said (in my Quotes to the right), “Alone we can do so little, together we can do so much.” Together, we chose Barack Obama.

God bless America.

Monday, November 3, 2008


Every vote counts!!! YOU count!!

Not voting means this could happen:

Would you want that to be you?!?!? I didn’t think so.

No matter who you vote for, just do it.

Saturday, November 1, 2008

My Journey, Part 4

And where was all this fun leading? The second day I was in the hospital, Dr., we’ll call him Green, the neurologist, advised me I had something called Transverse Myelitis. I asked, what about the Multiple Sclerosis the ED doctor mentioned? “Oh,” he replied casually, “You are too old for Multiple Sclerosis. My oldest MS patient is 45.” Well that made me feel better, sort of, except for the “too old” part. I had never heard of Transverse Myelitis and immediately called my sister to look it up on the Internet. The results she read me were horrifying, with causes like AIDS and Lupus, and dire prognostications of permanent, crippling disability. It was also a symptom of MS, but I figured he had ruled that out for me.

Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.

While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.

About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.

The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.

Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.


I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.

Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.

He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”

There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.

In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.

The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.

I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.

So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.

My friends tell me if anyone can handle this, it would be me.

Time will tell.

Thursday, October 30, 2008

My Journey, Part 3

I have raised my children alone for most of their lives, even before my husband died. He was a tugboat captain who was away as much as he was home. I was the homemaker, the disciplinarian, the homework helper, the story reader and, finally, the breadwinner. I didn’t get sniffles, I didn’t take naps. I had my last two babies at home. I was indestructible.

Suddenly, here I was, on the other side. It had been me before assessing patients, asking embarrassing questions, performing humiliating procedures, examining private parts with clinical detachment. But now a nurse asked me in front of my son when my last period was. Another came in while my son and pastor were chatting with me and pleasantly, loudly inquired if I had urinated yet. The neurologist, while surrounded by four or five eager residents, asked me if I had noticed that some of my symptoms had begun as I entered menopause. This was the day after he had gallantly told me I was too old to have MS. “ I haven’t GONE into menopause yet, for Pete’s sake. I am a freak of nature, still fertile at fifty.” The residents cracked up, but he looked irritated, as though I were breaking the etiquette rules of being paralyzed and in a hospital. Levity needed to be checked at the door.

There seemed to be a concerted, and successful, effort to make me feel old, unattractive and nothing more than a mass of body functions. Were they having meetings at night trying to think of the most demeaning treatments and/or questions?

The adorable medical student who was assigned to me was required, as part of his report, to interview me regarding my sexual history. I’m a mature adult, I thought, no problem. First question: Are you sexually active? Ok, so I haven’t had a date in, cough, cough, ok, a while, but I would be if I could be. I assumed being ready, willing and able qualified. The fact that I was not actually having sex with anyone at the moment was, in my opinion, a technicality. These thoughts went through my head so fast they barely registered before I answered, dope that I am. So, yes, I replied nonchalantly, blissfully unprepared for his reaction. “REALLY?!?!” he exclaimed in clear incredulity, if not disgust. He almost fell off his chair. I was mortified. I obviously looked heaps worse than even I thought. Next question: Are you involved with men, women or both? Now it was my turn to be shocked: “Or both”!?!?!?! I suppose I should have been flattered at the implication I could attract both genders when the fact was at this point I could scarcely scrape up one member of the opposite sex. “Oh my God! Men, men! Just men, only men, nothing but men.” It was starting to sound like entire Sixth Fleet, so I stopped short. “Oh my God, but not too many men, not that many.” I was babbling. Next question: how many? Oh crap. I came of age in the late Sixties and early Seventies. This kid is going to think I am a complete pig. So I lied, guessing at what felt like a decorous number for a fat fifty year old. “Four?” I offered. There were no gasps of either shock or pity, so I relaxed a little. Further questions about birth control, childbirth, number of pregnancies, number of children, forced or unwanted sex. Answers: Always careful, natural, 4, 4, no. Lie, truth, truth, truth, lie. No way was I going into any more detail about my life and hard times with this sweet little boy.

I discovered that anyone would have claustrophobia in an MRI coffin. Xanax became my new best friend. But even that was not too much help for the brain MRI where not only are you encased in a 2 foot diameter tube, but you have a cage-like mask snapped in place over your face. And you can’t move. For over an hour.

The neurologist pushed for a lumbar puncture, which I did not want. I agreed tentatively and reluctantly after the promise of heavy-duty sedation. Oh, and a possible diagnosis and, yay, best of all, discharge! “I want to be sedated within an inch of my life”, I told my regular doctor that morning when he stopped in to see me. I love him because he is so good-natured and sympathetic. “ I don’t blame you.” he replied reasonably. However, unbeknownst to me, this slipped through the cracks and nothing extra was ordered.

The obnoxious nurse I had that day came in while I was saying this to my doctor and, without speaking to me or introducing himself, started asking him questions about “she” and “her”, i.e. ME!!! When he paused to take a breath, I firmly stated to him, “SHE would like to be told ahead of time when SHE'S going for HER lumbar puncture.” My doctor chuckled, but the nurse just glared at me and went back to what he had been saying. Twenty minutes later, he came in and said, “Transport is here for your spinal tap.” I said, “But I haven’t had any sedation. And you never told me.” He checked my chart and said, “Well I can give you .5 milligrams of Xanax.”

Considering I wanted to be at a point where they could tell me they were going to remove cerebrospinal fluid through my eyeballs and I would say okey dokey, .5 milligrams of Xanax was not going to even begin to cut it. And I told him so. He started huffing and puffing. I was obviously very inconvenient and annoying. “I would have to call your doctor for something more.” “Knock yourself out then”, I replied with all the dignity and indignation I could muster while wearing blue gingham pajamas. He trumped me though, not just by being fully dressed, but also by spitefully canceling the crucial test I already didn’t want. That’s when I had my melt down, getting on the phone to the nursing supervisor and starting to pack. Within five minutes I had five doctors and three nurses in my room, with soothing, psychiatric, talking-someone-off-the-ledge voices, offering me massive doses of Valium. They had me at 10 milligrams.

A lumbar puncture is a diagnostic test that withdraws spinal fluid by sticking a large gauge needle directly into the space right around your spinal cord. YOUR SPINAL CORD! If that wouldn’t freak you out you would have to be a stone and of course would have no spinal cord so you would have no reason to be upset. Mine was to be done guided by x-ray. I assumed that was because I was fat, which only added to my distress, but later found that because it was more precise with x-ray guidance, the sample was better diagnostically. Silly me. Afterwards, my regular doctor acknowledged he had never experienced one and asked me how it had gone. I was chastened to admit that despite my fear and general carry on, it had not been that painful, just merely awful. To feel the searing burn of the anesthetic, the pressure and almost audible pop of the insertion and the shocks as nerves are stimulated is beyond unpleasant, even while stuffed to the gills with Valium.

Next: So what's wrong with me, besides the obvious?!?!

Tuesday, October 28, 2008

My Journey, Part 2

The second week in August I started feeling an odd sensation gripping my waist, like something was tightly wrapped around my middle. It was hard to take a deep breath and I would be winded after just a few steps. I had incredible pain in my back. The prospect of stairs, never mind the actual fact of having to climb them, practically brought me to tears. I had to attend frequent meetings in another building, down the hill from the main facility where I worked. It was so difficult to walk back up that I found myself actually praying God would get me back without disgracing myself by falling on my face halfway there. He always came through for me, I always made it, although I would be sweating and literally gasping for air. I finally realized I had to do something. So with all the wisdom of my 19 years of education, my 13 years as a nurse and my 50 years of life, I made an appointment at last. With a chiropractor.

To be fair, he listened and gave me a seemingly thorough neurological exam, the results of which should have sent me flying to an emergency room. A test for proprioception, outstretched right pinkie to nose with my eyes closed, overshot my nose and landed at my left eye every single time. Over and over again I missed abysmally. Hmm, he said, rather than the totally appropriate, holy shit!

How long have you had a problem with bradycardia, he asked. Never. Well your pulse is 40. FORTY!? He could not get a blood pressure. These alarming signs still did not send me to the hospital. He said he believed it was the vitamins I had begun taking for the leg spasms I had been having that were keeping me up at night (more ignored symptoms). Ok, if he was selling, I could buy that. He adjusted my spine. I went back for four more visits over two weeks. Then I started having trouble walking. That was on a Thursday. I went to see him Friday night, my legs scissoring as I struggled to put one foot in front of the other. He tested the strength in my toes. My left foot and toes offered no resistance. None. Zero. They were floppy and flaccid. He would not adjust me and said he thought it was time for an MRI. It was actually time for an ambulance, but I was in total denial. He looked at me gravely and asked, “What are you most afraid of?” Because I truly believed there was nothing really wrong with me, there could be nothing wrong with me, I laughed and said, “Well, that I have a debilitating neurological disease that will kill me.” He didn’t smile. Uh-oh.

That night I was fascinated by my useless left foot. My leg was now so weak that I couldn’t lift it to cross it over the other when I was sitting in bed. Saturday I spent cooking for our church picnic the next day. I was dragging my leg as I scuttled around my kitchen like Quasimodo. I went to bed that night all ready for the picnic, still insanely believing, hope against hope, that these were some transient aberrations. I woke up four hours later and could not empty my bladder. I couldn’t walk normally and my right eyelid was drooping so much it was practically closed. Almost my entire body was numb. I finally had had enough.

I got dressed, intending to surruptiously drive myself to the hospital. However, when I opened my bedroom door, the three adult children who lived with me were all still awake and sparky at 3 o’clock in the morning. Indeed, two of them had only just come home. Ahh, to be young. When I emerged fully dressed from my bedroom in the middle of the night, their jaws dropped. They dropped even farther when I told them I, who never even acknowledged a cold, was going to the emergency room. They all wanted to come, but the prospect of that scene, with all their different personalities and coping styles, was like something out of the Marx Brothers. I finally agreed to let my oldest daughter come with me. I still drove, an in-denial control freak to the end. Independent, private. How little I was aware that my existence was about to be irretrievably altered. I was driving straight from the world of ignorant bliss to the world of slap-you-in-the-face chronic illness.

At the hospital, no one seemed particularly upset by my symptoms. Indifferently triaged, I sat in the waiting room for over an hour. Knowing the first thing I would be treated to was a catheter, when I was finally called I cheerfully told my daughter to wait for me there. “A cortisone shot, and I’ll be right out!” She looked at me like I was nuts, but she stayed put.

And then, for the only time besides giving birth 28 and 29 years earlier, I became a hospital patient. Off came the clothes, except OF COURSE for my underwear. I may be Episcopalian now, but the Catholic modesty I was raised with is indelible. On went the threadbare gown, worn previously by untold, and probably unwashed, hordes. Ick. I described my symptoms to a bored physician. I was embarrassed that I had had the numbness in my hands for months but had done virtually nothing, so I said it was “a few weeks”. He asked, when did it start? Because I was too stupid to make my answers match my prevarication, I honestly answered May. This was now the last week in August. “MAY! That’s MONTHS!” he exclaimed, as though I had committed murder. “O.K., well its still weeks.” I meekly replied. I told him about the urinary hesitancy (which implies seconds but had been over an hour) and he immediately ordered the dreaded catheter. Goodbye knickers. I tried to get out of it, because I had finally managed to go, but clinically I knew they needed to evaluate any urinary retention. My nurse came in with the sterile kit and introduced himself. He seemed to be nice man and I had no doubt of his competence. But I said something I would not have been capable of a few years earlier: “Can I please have a female nurse?” He was very gracious and accommodating, but definitely looked disappointed, which I found a trifle creepy. Later, when it was time for it to be removed, he popped his head in, snapping on gloves. “Is it ok if I take it out?” My head said “What on EARTH makes you think if I didn’t want you to put it in I would be perfectly fine with you taking it out?!?!?!” But I was forced by years of good breeding to sweetly say, “Would you mind terribly if I had a female nurse again.” Oy vey. He did not look as accommodating this time, but a lovely woman came in and disconnected me. I couldn’t get my bloomers back on fast enough.

Now Mary Kate could come be with me. One of the staff went to get her and my girl walked in with a steaming container of tea that she had gotten for me, unasked. She is truly the perfect child. It was the best thing I had ever tasted, a cup of normalcy. We sat and watched Hurricane Katrina cruelly descend on New Orleans. But my mind was careening. What was wrong with me? Did I have a brain tumor? Did I have Lou Gehrig’s disease? Did I have AIDS from those accidental needle sticks at work years earlier, or careless love with the wrong person? A CT scan was done, blood was taken. The doctor came back. The blood work and CT scan were telling them nothing and, as I still couldn’t walk, or feel, they were admitting me for more testing. “But”, he said blithely, right in front of my dear, pale, loving daughter, “we are probably looking at Multiple Sclerosis.” And he breezed out.

I was stunned, but for all the wrong reasons. I had a brand new job and no sick time. They didn’t know me well enough yet to be aware I NEVER took off sick from work. I couldn’t be admitted! Additionally, because I could not take sick time yet, I would not get paid for any time off and would be losing money every day. On the other hand, I was almost relieved. I could give up trying to pretend I was well and finally get help. The words “Multiple Sclerosis” did not even register. Mary Kate began straightening my sheets and smoothing them over my legs. I looked up at her and she was crying. Taking her in my arms, we held each other and shook.

Next: Testing, testing and more testing. And a steady diet of humiliation.

Sunday, October 26, 2008

Long Day's Journey Into MS or a Story of Pathological Denial

Some of you have read this already and I apologize for the repetition. It feels a little self indulgent (ok, majorly self indulgent), but what the heck, isn't that what a blog is for? :)

This is the story of how I discovered I had MS.

Bending my head forward one day to examine something closely, I had the sensation of warm water rushing down my chest, arms and legs, right down to my toes. It was so tangible, I looked up at ceiling in shock, prepared to see a cascade emerging from above.

But like a surreal scene in a horror movie, there was nothing. No crack, no hole, no leak, no water. I tentatively patted myself down, feeling for moisture. Nothing. I lowered my head again and it happened again, but now I felt shooting pain along with it, like heated wires. I recalled the feeling that had gone along with the sciatica I had in my last two pregnancies, so I assumed my middle-aged spine was springing a leak. A disc problem, the result of years of poor posture and, well, just years. Fascinating, I thought idly, how we are put together, that everything is so connected something in my neck can affect something in my toes. And with that burst of genius, I did not give it another thought. This amazing sensation was a new part of my existence, whether I lowered my head to write a check, to put on a tee-shirt or follow the hymnal at church. Uncomfortable, but surely benign. Because I did not get sick. Ever.

Years earlier, I had experienced several episodes of numbness in my legs, from the hips to the toes, for about four weeks each time. I was afraid to drive because I had trouble feeling the pedals. Utilizing tremendous common sense, not to mention regard for public safety, I drove anyway; I simply was afraid the whole time. Pinched nerve, I thought. I did mention it to my doctor when I went in for a rare visit. He agreed. I did not get sick. Ever.

Years before that, I had dealt with an eight week bout of vertigo. Treated with Antivert, nothing really helped until it finally, gradually, dissipated. Once over, I put the incident out of my mind. Like the intermittent numbness I had in my hands that I first noticed while visiting my family in Ireland. Like the muscle spasms that cause my hands to jerk dozens of times a day. Like routine bouts of dysphagia. Like the back spasms I have three or four times a year that are crippling in their intensity and last for days. When I allowed myself to think about it, I chalked my symptoms up to neuroses. I was dizzy because I was unhappy at my job. Ten days with my mother in Ireland and it was a perishing miracle that all I had was numb hands. Surely I couldn’t swallow because I was trying so hard to lose weight I was making myself crazy. The back pain was the somatization of stress. I could think of no rationalization for my hands twitching, therefore I ignored it.

My left hand, where it rested on the warm surface of my laptop, began to feel pins-and-needles numb in May of 2005. The numbness gradually spread up my arm. I thought, hmmm, carpel tunnel. But, as a nurse, I knew the wrong areas were affected. Maybe something from the heat of the laptop? Then my right hand started to go numb. Over the next few days, it spread up my right arm as well. I couldn’t feel textures. My handwriting was unrecognizable. I went to push my hair behind my ear and couldn’t feel either the hair or the ear. I ended up ineffectually slapping at the side of my head. This scared me enough to call the doctor, who ordered a spinal x-ray. Totally normal, as we had both expected. Because I…you know the rest.

That month I was offered a new position after three miserable years working at a job I hated. I passed the physical with flying colors. Although it had been hard to produce enough urine for the drug test. Again. Because another one of my problems, conveniently ignored, and certainly not discussed, was an inability to urinate at times, despite having a full bladder. One night I had gotten up and, half asleep, shuffled to the bathroom. Where nothing happened. My eyes flew open as I completely woke up with a start and thought, “Oh my God, I AM SO FAT I HAVE BROKEN MY BLADDER!!” (I am obsessed with fatness.) But I did nothing, told no one, thought of it no more. Each time, I put it out of my head. Sort of. For a growing anxiety and fear was creeping ever so slowly into my consciousness.

I started my new job as a Director the first week of July. I was happy and proud of myself. And I was slowly dying.

My hands were so lacking in sensation that I had cramps from gripping the steering wheel driving to and from work. I had to pick a pen up with one hand and place it into the other in order to write a confounding scrawl. My feet started to get numb, then my legs, then my groin.

My girls and I went out to Lancaster to get a new puppy the first week in August. We rambled up and down through the lush farm fields of Pennsylvania. We ate breakfast at a stuff-yourself-all-you-want Pennsylvania Dutch restaurant, giggling non-stop because we couldn’t stuff ourselves nearly as much as we wanted and because we were the only ones in the place under 80. We drove by an Amish family in a horse drawn buggy, whose little boys waved sweetly and enthusiastically at us as we passed them. And then we brought home our adorable Isabella. But that lovely day was shadowed by the fact that I knew there was something terribly wrong with me. I knew it, but couldn’t process it. A pinched nerve, a pinched nerve, I whispered to myself. You are really sick, something whispered back. I shut that out.

Next: I get worse.

Friday, October 24, 2008

A Funny Thing Happened on the Way to Work

A few days ago, on my way to work, I was behind a pick-up truck at a stop light.

In big letters across the back it said “ALPHA MALE”. Underneath, in smaller letters, it said “Randyman Services”.

Well my jaw fell open. I thought that was illegal.

I was scrambling for a pen and paper to get the number when I realized there was a wet leaf stuck on the lettering. It formed a line that closed the ‘H’. Instead of “Randyman” it actually said “Handyman”.

Phew! That could have been embarrassing.

Saturday, October 18, 2008

County Jail

And now for something completely different...

Since my life is currently exceedingly uninteresting (thank you God!!), I am falling back on past writing.

This is an essay I wrote two years ago while I was in graduate school (be prepared, it's a little long):

Outside, there was the illusion of the Emerald City, lit and sparkling in the dark. Oz with barbed wire. Our graduate class in Research was here for a tour. We would be writing observations and then adding personal commentary, prior to applying the data to research projects on prisoner’s rights. Most of us, ranging in age from early twenties to early fifties, had never been in a jail before. Either as visitors or residents.

I expected it to be cold inside. And it was, briefly, in some spots. But mostly it was suffocatingly warm. It has the initial, off-kilter atmosphere of institutions that run 24 hours a day: remnants of meals being eaten at odd hours, a whiff of cedar from somewhere, aftershave when you don’t expect it. At one point, for only a few seconds, an inmate passed with a barrel full of wet mop heads and there was the sour smell of cleaning fluid and dirty water. Otherwise the air was innocuous. We would be told, numerous times, that the Sheriff was very proud of the smell, or lack thereof. He frequently reminded us that this was thanks to his innovations and general excellence.

The visitor orientation was meticulously managed and we observers were as carefully watched as we were watching. Perhaps even more so. In a large, utilitarian, ersatz courtroom, students’ faces were studied by five men. Each one of them had a clearly defined role. The guards postured aggressively. Our initial greeter, the Undersheriff, was smooth and impeccably dressed. The Lieutenant gave a practiced speech. The Captain seemed uncomfortable, either about speaking in front of a group or because his suit and shirt were two sizes too small. For whatever reason, he appeared less than happy about visitors.

I could not have anticipated that I would ever contemplate using the phrase “I wanted to puke” in any assignment for graduate school. However, that was my frequent sense while we were being treated to this performance.

The Undersheriff was a small, natty man who looked something like Ed Sullivan. I actually even wondered, looking at him closely, if he was wearing makeup. He efficiently rattled off statistics advising us the jail, between volume and revenue, was one of the biggest corporations in the County. At first, for about 2 minutes, I was impressed by the smooth and professional presentation. Then I realized that before our eyes an extraordinary PR juggernaut had begun to roll.

The theatrical build up as each official was put forward to give his spiel was unintentionally hilarious. The Undersheriff introduced the Sheriff so effusively that if he had been introducing God Almighty Himself, I still would have thought he was little over the top. The only things missing were drum rolls and strobe lights.

The officials’ poses demonstrated an almost cartoon-like aggression, a complete waste of energy for the majority of the credulous and benign graduate students they had in front of them. The Sheriff was articulate and has the mannerisms of a movie Mafia Don. His favorite words were “I” and “me”. I knew we were observing major ego issues when the Sheriff proudly regaled us with tales of all the celebrities he had “worked” with at the jail, ticking them off on his fingers like virtual trophies.

Blustering emphasis on improvements, advances, humane treatment, concern, money saving, money earning. We were frequently told what we would see. Or what we were being ordered to see? Subtle suggestions? Not so subtle suggestions? A great deal of testosterone and self-congratulation throbbed through the air.

I kept wondering who they thought we were that they had to sell us such a bill of goods regarding their beneficence and exemplary management. We were a bunch of goofy grad students for Pete’s sake!

Our tour commenced.

Impressions of pipes, cinder blocks, purely functional industrial fixtures, gouged layers of heavily waxed linoleum. Bleak fluorescent light flickering. The sound of doors slamming over and over and over again.

We were corralled through dingy corridors and down dark stairs to the booking area, which is incongruously painted in salmon and teal. Alongside state of the art fingerprint identification technology sits an ancient, battered, wooden fingerprinting stand. Plastic chairs, metal desks. Buzzers, doors, doors and more doors. Painfully young new inmates stared at us through glass. Boxes of latex gloves sat on a desk, a reminder of rampant HIV and hepatitis. No other Universal Precaution interventions, such as masks, were noted, despite a recent upswing of tuberculosis.

There were no clocks anywhere. Except in the Control Room. Right above the shotguns holstered to the wall. Endless barren halls, battered, pock marked floors, mirrors mounted to reveal hidden corners around a chimney. And then, the prisoners.

Could there be a more hopeless sound than a metal door closing irrevocably on your freedom? I could not bring myself to do anything more than glance at the inmates. It seemed the most obnoxious invasion of privacy to gaze at them as if they were animals in a zoo instead of respecting the fact that they were human beings at their most vulnerable. Before we entered the common area they were chased back away from us, not unlike a lion tamer beats back the beasts at the circus. This, it was emphasized, was for our safety.

The pods in the jail are three tiered and color-coded. Each has an individual gym and a shared outdoor exercise space, perhaps 20 by 30 feet. The cells have metal doors with glass windows. Meager mats cover stainless steel bunks. Chips of paint and stains from dried fluids dappled the floors.

Some inmates ignored the visitors entirely, continuing to watch TV, lie in bed or talk on the multiple payphones. Others taunted and jeered. And there were those who simply stared.

I had the absurd impression of the movie set from Jailhouse Rock and half expected Elvis to slide down one of the metal poles. The way the evening was orchestrated, I would not have been one bit surprised if the prisoners had formed a chorus line and burst into song.

On a scale of 1 to 10, with 1 being a state of delirious happiness in every aspect of your life, and possibly even having magical powers, and 10 being a slow, painful death, jail would have to be a 9. So the incongruous absurdity of being cheerfully ushered into the guard’s dining room for cookies and drinks at the end of the tour was especially offensive.

And then receiving “gifts”, like kindergarteners after visiting the firehouse?! It defies imagination to think what people do with the things they handed out, which included a Monmouth County Sheriff Department patch. It was a farcical touch that befitted a Saturday Night Live sketch.

I can’t help feeling anybody who thinks they are that wonderful is heading for a fall. Because there but for the grace of God goes any of us.

And so we headed back to our lives and academics. We left behind a desolate stronghold and two unique populations, one smugly superior and one grounded in defeat.

Sunday, October 12, 2008

The Week That Was

Not one remotely amusing or interesting thing occurred all week. Considering the year I’ve had, I am taking this as a good thing.

I have not had any Deep Thoughts either.

I have noticed my Deep Thought posts are the ones that receive the fewest comments. As in…none. Perhaps they are Deeper than I intend.

I will try to be more observant in the coming week. There must be something funny going on.

Sunday, October 5, 2008



Changed the template. I do that every few months because I just get so bored with one thing. Which is weird, because I never do that in real life. I never rearrange the furniture. I practically need to be sedated before I will think of changing curtains or a bedspread. But there you have it, I needed a change. I am trying to find the one that feels the most right.


What did they used to say women did to cheer themselves up? Had their hair done and bought a new hat?

Well, I got my hair cut.

Before hair:

After hair:

And I made a hat:

And the beginnings of a sort of matching scarf:

Had dinner with three dear friends last night.

Bella and I went to the St. Francis service at church today to be blessed along with dozens of other people, dogs, cats, birds and a horse. Although the horse stayed outside.

Bella was knackered afterwards. Doesn’t she look it?

Our church is an incredible community. Check out our website:

About the Apple

The little notes about donations in Dennis’ name were on apples because that was part of the Fall theme.

Ryan and Claire

They will be home soon!!! It will be so good to see them!!

Thursday, October 2, 2008

A Gift

I have many wonderful people in my life who are very good to me. Sometimes, when I get lost in a maze of ceilings and finances and loneliness and illness, like this week, I tend to forget that.

My friend Debe in Missouri is an accomplished, innovative artist. She also has MS, but continues to express and generously share her talents.

Yesterday I was surprised by a package. And this is what was inside.

The attached note says:

Sweet Marie,

A bottle of Goddess dust to help ease your pain and worries.

Gaze upon it. Remember I will think of you daily and send healing prayers

Her kindness has literally taken my breath away.

To say ‘thank you’ feels like the most banal and inadequate response possible. So what I am called to do is to share her love and hope with anyone reading this post who also has a need for healing prayers. I know so many of you have just as many things to deal with and worry about as I do, if not more.

Even if I don’t know you, even if I don’t know what you are carrying, please know I am sending healing prayers your way and will also think of you daily.

And thank you Debe, for this treasure, for your love and for your friendship.

Sunday, September 28, 2008

The Ceiling Saga, Continued

Well, unfortunately, when I woke up Saturday morning, the ceiling was still collapsed.

Same with Sunday morning.


On the plus side, the living room ceiling hasn’t caved yet.

And I have received lots of good advice.

As tempting as it is, I have put any suggestions involving actually killing the contractor on a back burner.

Ditto for “just put a match to it”.

My sister Cathy said: Ok, let me get this straight…he offered you your money back?
Me: Yes.
Cathy: But he said only if you didn’t tell the insurance company?
Me: Yes.
Cathy: And you said, no, I am telling the insurance company?
Me: Yes.
Cathy: So why didn’t you keep your mouth shut, get the money and THEN tell the insurance company?
Me: GGAACCKKKK!!!!!!!!!

My Son the Lawyer is in New freaking Zealand on his honeymoon. Well, I guess he deserves that. lol He will be back in a week. In the meantime I will see what the insurance company has to say.

I will tell Ryan to be very, very mean to the bungling scam artist who left me with this mess. That ought to be entertaining considering Mr. Contractor’s incompetent knickers were in a twist from me yelling at him.

What kind of contractor can’t take a little yelling, anyway?!?! And from a girl?!

Ohhhh, right. An inept, swindling one.

Friday, September 26, 2008

Just Another Relaxing Friday Night

A cup of tea, reading, knitting, feet up in bed. Ahhhh.

So I can take it in stride when MY SUNROOM CEILING FALLS DOWN!!!!!

I’m sitting in my bedroom when I hear this ungodly crash. And this is what I found:

The roof and ceilings were repaired in April. And now the repaired ceiling is lying in soaking wet pieces on the ground. I would not call this a successful job.

I frantically called the contractor who had done the work. And guess what? He was SNOTTY. What is this, an epidemic of snottiness? My ceiling is on the floor and he’s nasty to me?!?!

He actually said to me that he told me at the time the roof was unfixable. And I would find this acceptable? I said to him, are you kidding me? You said I can’t fix your roof and I said okey dokey then here’s $3000 thanks for not fixing the roof?

And he replied “I can only assume that you are talking to me like that because you are upset.”


My CEILING is on the FLOOR and I am hurting his feelings because I raised my voice?!?!

“If you think that was bad” I replied, “then hear this: I paid you to fix these things AND NOW MY FUCKING HOUSE IS FALLING DOWN!!!!” Because the living room ceiling is looking pretty precarious too.

We went back and forth, him insisting he told me he couldn’t repair the roof, I saying he never told me any such thing, until it was obvious we were getting nowhere. He offered to give me back my money if I didn’t call the insurance company.

Oh, I don’t think so. The insurance company recommended him. They are definitely going to hear from me. So he said forget it then, sue me. That is when I hung up. And filed a claim with my homeowner’s.

Now I have to go cry for a little while because an up part of my house is down. And it is a terrible mess that I am going to have to clean up. It is just too much.

I am so tired.

Monday, September 22, 2008

A few more things...


I loved my wedding purse! It is my Stevie Nicks bag.

Everything I choose my fashion arbiter Christine rejects as "too Stevie Nicks".

Hey, I LIKE Stevie Nicks. I can't help it if I am an aging hippie. And I have good, classic rock'n'roll taste.

Christine is ten years younger than me. You didn't see me out on the dance floor waving my arms around like a fool to Bon Jovi!

I do try to forget hearing a rock critic refer to Stevie Nicks as "the Norma Desmond of rock'n'roll". Ouch.


When I got the hotel to meet the boys before the wedding, the four handicapped spots in front were already taken. I was strung out and stressed out, still had to put my make-up on and hadn’t been able to zip my dress all the way up in the back because of my broken shoulder. Not a happy camper.

I drove around fruitlessly trying to find a spot I would be able to walk from. There were NONE. I was close to tears because I was also late.

So I parked in the front, figuring I would get one of the boys to move the car for me.

When I went in, I said to the clerk, “I can’t believe you only have four handicapped spots for this entire hotel!” And she got SNOTTY with me!!!! Can you believe it?!?! Alright, so I looked like a mad woman, frazzled, no makeup, my dress drooping down in the front to reveal my underwear. But she was mean. To a handicapped person! So my only apparent handicap at that time was that I appeared to be insane. But still.

She said, "Ma'am, we have plenty of handicapped spaces."

I replied, with total maturity and self restraint, “Well thank you SO MUCH for your sympathy and helpfulness. It is so gratifying to see such a demonstration of really outstanding customer service.” And I said it sort of loud.

So she said, with super-sized snottiness, “Ma’am, we have at least four handicapped spots at each entrance.”

So I said, “Oh, like the other entrances that are a football field length away?!?! Well that IS helpful.”

What I really wanted to do at this point was start jumping around yelling “ATTICA! ATTICA!!!” or at the very least chain myself to a chair in the lobby. But I realized that while in principle Ryan might support my pursuit of social justice, choosing this particular moment could cause him to be less than pleased.

So rather than make a massive a scene in the hotel lobby, I just had her call his room and up I went.

She may claim that I stuck my tongue at her when we left. But I will deny that to the day I die.

(When Bob went to move my car, there was a spot right in front. Ah, the irony.)

My Birthday

It was yesterday. I was mumble mumble mumble years old. Chronologically. Maturity wise I am approaching 12.

I had actually been awake for about an hour before I remembered it was my birthday. That struck me as a little pathetic.

But Ryan and Claire surprised me at the post-wedding brunch with a cake. I was so touched I forgot to take a picture of the cake before it ended up looking like it had been ravaged by a pack of rabid badgers:

It was delish.

Everyone sang happy birthday and I got this beautiful card from my FIVE children:

I can’t deny the fact that they like me!! Right now, they like me. lol

Happy Birthday to me!!

Sunday, September 21, 2008


And what a wedding it was. It is an incredible experience to be in the same space as 200 people who are simply overjoyed to be together. It would not be an overstatement to say the day was absolutely perfect: the company, the weather, the happiness, the fun. And oh, everyone had SUCH fun.

First there was the groom and his handsome groomsmen. With the exception of Claire’s brothers, these are boys (ok, men!) that I have known since they were little guys. Not only have they grown up to be stunningly attractive, they are the nicest, kindest, funniest, sweetest people you could ever meet (and I have discovered even though they are new in my life, Claire's brothers also fit into those categories!):

Ryan, looking very cool, calm and collected indeed on the way to the church:

Ryan seeing Claire as she appears at the back of the church:

Here comes the bride:

Makes me cry:

My four, Elizabeth, Mary Kate, Ryan and James:

At the beach:

The reception was a blast. Ryan and I danced to In My Life. The great band kept everyone dancing. Yep, I was able to dance thanks to my dearest friends, who held onto me so I could feel normal. Thanks Michael, Christine, Cathy, Bill and Peter! I danced A LOT with my friends holding me up. The band was awesome and played a lot of Bruce. Of course when they started Jersey Girl, I was in the Ladies brushing my teeth (ok, I'm a teensy bit neurotic about oral hygiene). But within minutes, me, my sister, my best friend Christine were all belting it out. 'Cause down the Shore, everything's alright...nothing matters in this whole wide world when you're in love with a Jersey girl!!! lol

I didn’t cry as much as I thought I would. I felt so sad for Ryan that his dad wasn’t there. But Ryan and Claire did not forget him. Dennis was mentioned in the program and his memory was evoked at every table.

(I don't know why apples; when I find out, I will tell you.)

My sister-in-law, who I LOVE, sat next to me. My nieces (3 of her 6 girls) were there as well, along with my cousins, my aunts and best friends (I am lucky enough to have even more wonderful people in my life; I only wish I could have invited them all!!). I was surrounded by love. How blessed I am!!

The reason I didn’t cry buckets because I was so, so happy for these two, who are clearly meant for each other. I was choked up thinking of my precious little boys, how they have grown and how proud I am of them.


There are places I remember
all my life
though some have changed.

Some forever, not for better,
some have gone
and some remain.

All these places have their moments,
with lovers and friends I still can recall
some are dead and some are living;
in my life, I’ve loved them all.

But of all these friends and lovers
there is no one compares with you
and these memories lose their meaning
when I think of love as something new.

Though I know I’ll never lose affection
for people and things that went before
I know I’ll often stop and think about them.
In my life, I love you more.

Saturday, September 20, 2008

The Rehearsal

The rehearsal dinner was a resounding and joyous celebration.

First came the church part. Blah blah blah blah.

I am not usually like that about church stuff, especially worship. But this was just droning, YOU - stand here, YOU - stand there, YOU - sit, YOU - bow. Excruciating. And now I will probably disgrace Ryan and Claire because I didn’t pay a bit of attention and will have no idea what is going on tomorrow.

I was too busy enjoying my grandson.

Already scoping out the girls. Hey, James, good choice. That one is a doctor, but unfortunately is already married.

All the boys and girls took the instructions very seriously.

My two precious, handsome boys , Ryan, James (the best man) and my lovely new daughter. Oh, and an extraneous clergyperson:

Then we went and we had us a PARTY.

We were in a local restaurant, in the front room, with the doors opened up to the outside. On a cool, breezy evening, it was perfect.

The service was cheerful and attentive, the food was awesome, the company was the best. That room glowed with the sheer pleasure of each other's company, happiness for Ryan and Claire and gratitude for the opportunity to join together for such a wonderful occasion.

Isn't he gorgeous?!?!

Ryan was made an honorary member of the bride’s family.

He made a moving speech on how much he and Claire loved everyone there and how thrilled they were to be surrounded by so much affection and support. Then he, with beautiful and loving words, he thanked me specifically. Although he didn't mention my tan.

This is me (see how tan I am? lol):

Everyone is full of joy for these two beloved young people.


The Wedding!!!!!!

Thursday, September 18, 2008


I cannot believe that I now have any experience with this subject, which in the past I have expressed nothing but disdain for.

Disdain, that is, until I tried on a dress that made me appear to be an illustration from “Ghosts of America”. My skin looked like the white underbelly of a fish, blending with the beige of the dress to create the understated yet hideous fashion statement of having a wasting disease.

My daughters go to the tanning salon on a regular basis. “Isn’t it relaxing?” asked Mary Kate.



Why sure.

Here are some of my relaxing thoughts:

Gosh this is loud.

This is really scary.

Is it supposed to be this loud?

Maybe the bed is broken.

I wonder if the girl remembered to set the timer.

Maybe the timer is broken.

Do I have enough bronzer on? I think I don’t have enough bronzer on.

Maybe I have too much bronzer on.

Maybe I will turn orange.

I think she forgot to set the timer.

Gosh it’s getting hot.

Is hair flammable?

I am positive she forgot to set the timer.

Could this bed be defective?

Maybe it’s defective and has freakishly strong UV rays.

Maybe I am going to burst into flames any minute. Starting with my hair.

Agh!! Agh!!! I am going to end up in the burn center swathed in bandages and loaded with IV pain killers.

Actually, now that I mention it, that last part doesn’t sound too bad.

She forgot to set the timer!! I know it, I know it!!! I am going to be immolated, I know it!!! My children will gaze sadly at my charred remains, hold each other and say “I hope she left some money.”

The whole store will burn down and it will be all my fault. It will be known as the “The Great Tanning Disaster of 2008” and will have my name inexorably linked to it because it will turn out I had some weird genetic predisposition to spontaneous combustion when exposed to a tanning bed.

I will not only die a horrible death, but an embarrassing one too.

CLICK!!!!!!! The machine snaps off. Phew!!! I am alive, unscathed and, um… pink.

Alrighty then, all ready for tomorrow!!!

Monday, September 15, 2008


I decided to try out my make-up before the wedding.

I have been tanning, because with my pathetically white skin I looked like a corpse in my beige dress. I know, I know, I wouldn’t have believed it either if you had told me I would do such a thing. But I did.

Anyway, as I am now a whole different color (a color that I do not think actually occurs in nature), I had to buy new foundation. While poking around the make-up department, I saw false eyelashes. Because my sister was not there to say “ARE YOU OUT OF YOUR FUCKING MIND?!?!”, I bought them.

Now I have to tell you [yet another reason that it is a very good thing that I am in therapy], I have a hard time looking at myself in the mirror. So I always put my makeup on using a little tiny mirror, doing one piece of my face at a time. Then I take a quick glance to make sure everything matches and I’m on my way.

Besides the obvious, there are certain disadvantages to this method. Like occasionally being really, really surprised at the outcome. And not pleasantly surprised either.

Last night I put on my new makeup on using my teeny little mirror. I put on my false eyelashes and a nice dramatic, dark lipstick. I brushed my curly hair. Well, beat it into submission anyway. I was stoked, certain of stunning results. I looked at the finished product in the bathroom mirror. I was stunned alright.

I have only one word for what I saw. One word repeated over and over.

Hahahahahahahahahahahahahhahahahahahahahahahahahhahahaahhahahahahahahahahahahaha hahahahahahahahahahahahahahahahahahahhahahahahahahahahahahahahahahahahhahahahahaha hahahahahahahahahahahahahahahaha

I looked like my father in drag.

(N.B.: NOT that I have ever seen my father in drag!! Or that I know of any occurrence of him being in drag. It’s just I look like him and I looked like him with a ton of makeup on. Yikes, way to start rumors!!)

I couldn’t stop laughing as I peeled and scrubbed everything off. Why I am laughing I do not know. Anyone with half a brain would be weeping and having nightmares for weeks. I found it hilarious.

I don’t know what I am going to do that day, but it won’t be that scary clown get-up. No offense Dad.

Saturday, September 13, 2008

Cranky Saturday

I am cranky.

On a typical Saturday, I have maybe three or four errands to run.

Today I have THIRTEEN!!! Mostly associated with the wedding.

What I really want to do is knit:


Have a cup of tea, read and write:

(Alright, so it isn’t War and Peace. Cut me a break.)

I will admit, I am spoiled. After 31 years of raising children and putting everyone else’s needs first, I have an abundance of “me” time.

So I will get my stuff done as quickly as possible and hie myself back home to my yarn, book and laptop. Except by that time it will be time for wine, not tea.

Cool. :)

Monday, September 8, 2008

A Prize Winning Blog


I won a prize from my dear friend Jane in England who writes a great blog, I want to say it is hilarious, which it is, but it is also serious sometimes, and thought provoking. But mostly it is hilarious. And, clearly, Jane is extremely discriminating. ha ha ha

When I first read her post, granting this award to five blogs she thought were deserving, mine was listed first. I saw nothing but that big “Number One” next to my name and I was off like a rocket ship, gushing and blubbering and groveling in gratitude. A few hours later, when my vision had cleared, I noticed the disclaimer “…in no particular order…” ahead of her list.

Oh. Never mind.

I was pretty embarrassed and Jane had had a good giggle at my over-the-top reaction, but all’s well that ends well. ?!?! Whatever, I couldn't think of a way to end the paragraph.

Naturally, because this is my life, nothing is ever easy. There were rules associated with the award. Rules that took me five days to figure out.

So to start with, I will list the rules. Here they are:

1. Select 5 blogs that I believe deserve this award for their creativity, design, and interesting material or for contributing to the blogging community.
2. Each award has to have the name of the author and also a link to his or her blog .
3. Each recipient must then show the award and put the name and link to the blog that has given her or him the award itself.
4. The award-winner and the one who has given the prize has to show the origin of the award which is

Ok, they might seem simple to you, but I felt as though I went blind every time I read them. Hey, I never claimed to be a brain surgeon.

Then I had to pick five blogs. The hardest part. One, because there is really a lot of good stuff out there. Two, because I have not had the time to keep up with all the good stuff.

So here, IN NO PARTICULAR ORDER (so no one will embarrass themselves like I did; not that any of them would be likely to), are five blogs I think deserve recognition because of their unique talents:


Joe writes this eclectic blog, along with several others, that is remarkable for its humor, insight and crankiness. I love crankiness; it is my favorite emotional state because I think it uses up a lot of calories. Joe and I have a great deal in common, including a [probably unhealthy] love of toast. I was dismayed to see several things that I actually quite like on his list of things that piss him off, but we will save that discussion for another day.


This is Kate’s Life. And a rich one it is. Kate is a remarkable girl (sorry Kate, but when you’re younger than at least one of my children, you have to be a girl). She is very funny, extremely perceptive and sensitive and, best of all, also occasionally cranky. Are you sensing a theme here? Kate is also a physician, in her psychiatric residency. She already is a remarkable and empathetic practitioner. She is going to be one of the best.


For anyone who loves New York, this blog is a gift. I can’t walk these walks anymore, but I get to experience them vicariously through Teri’s site. She does the most incredible amount of research and her observations are spot on. I am always so grateful for the photos and the essays she posts. Talk about a Valentine to the City!!


When I first started my blog, the idea was to chronicle my loss of millions of pounds over the ensuing months. Well we know how that ended up. But Jessica, who was one of my first readers and commenters, has kept up her commitment. She is a sweet girl, generous with her praise, encouragement and friendship. She will always be special to me.


When you read Barb’s blog, you want to call her and have her come over IMMEDIATELY for a cup of coffee and commiseration. Everything that happens to Barb has happened to me at least once. Except for the being from Texas part. I am from the Bronx. But see, they both have ‘x’s in them!!! Her girls are precious and remind me of how much fun I had with mine until they grew up and became soul-sucking parasites (forget I said that, Barb, you are clearly a much better mother than I am, so no fears there). Barb is funny, smart and touching all at the same time. You will wish she lived next door.

So there you have it. Check out these great blogs and spread the word!!

…as I continue to gush “I can’t deny the fact that you like me!! Right now, you like me!!!”

Wednesday, August 27, 2008


Gee whiz, this work thing really gets in the way of your personal life!!

Between work and wedding and physical therapy three times a week, I have no time for anything.

But here are a few things that have been on my mind.


I got a new prosthesis this week. This always makes me cranky and unhappy. It reminds me of all the things that could have been and of what I don’t have. This is usually something I try not to think about too much. But at a time like this, denial, my good and faithful lifelong companion, deserts me. Reality is unavoidable.

I have big green eyes. A few years ago, the ocularist who was making my prosthesis remarked I had beautiful eyes. I thanked him politely but cringed. I wanted to say “You mean I may have had beautiful eyes. I could have had beautiful eyes. I did have beautiful eyes.”

But not anymore.

It just makes me sad.

Living Alone

I am currently living alone for the first time in my life. It is blissful.

I had one 23 year old parasite I mean child still living with me until 3 weeks ago. We had a serious, civilized discussion and she organized herself and moved out as a responsible adult.


In my dreams.

What really happened is she ignored me the day of my eye surgery, went out that night in my car and left me alone for the whole night, let my indoor cats out by leaving a door open and committed various and sundry other passive/aggressive insults to my existence.

So I calmly explained to her why this was a problem for me and how she was exceeding my boundaries.


In my dreams.

What really happened is I had a lunatic, maniacal melt down and did an imitation of the kid in The Exorcist, complete with head spinning and levitation. I think I spoke in tongues too. Because after a while it wasn't even English anymore, just shrieking, incoherent gibberish.

So she is now living with a friend and all are happy. Well, I actually don’t know if all are happy.

But I sure am.


IV Solumedrol, which I have been given multiple times to treat out of control MS symptoms, has many terrible side effects. Osteoporosis, kidney damage and diabetes are all things that it can cause with repeated use.

So what is my concern about this powerful steroid? Excessive facial hair.

Last night I dreamt that dozens of bristly little hairs burst out all over my chin and face and no matter how many times I plucked them, more kept popping up. It was horrible.

What can I say, I’m shallow. A hairy chinny chin chin is a fate worse than death.

Sunday, August 17, 2008

But Wait, There's More...

I had shingles this winter and was really sick. But not that bad. My mother called. She had me at Death’s Door:

Kay: Oh, you poor thing. I am so sorry this happened to you. This is horrible. This is terrible. Oh my God. How are you feeling?
Me: I'm feeling better today. (I hear my father in the background "How is she?")
Kay: (to my father) She says she feels horrible!

Very generously, my parents offered to bring me lunch. They were just going to drop it off, so they wouldn’t even come in. When my mother called she asked what I would like.

Me: Umm, a sandwich would be nice.
Kay: Ok, what do you like?
Me: Um, I like chicken salad.
Kay: Oh, your father and I love chicken salad. A & P had chickens on sale last week, buy one get one free. I stuffed one and roasted it. You know how your father loves that. And I made nice green beans with it. I cut the other one in half and made soup and chicken salad. Your father loved it. He loves soup and a sandwich. It's his favorite thing.
Me: I make good chick....
Kay: Ok, see you in a little while.

P.S. I got a turkey sandwich.

Saturday, August 16, 2008

Kay and Jerry Congratulate Marie

I finished my Master's last summer. It was something I had wanted for so long and I was really proud of myself. When I got my diploma, I called my parents. They were out, so I left them a message.

Here is the return phone call.

I swear I did not make ONE WORD of this up:

Kay and Jerry Congratulate Marie

Mom: Marie? Congratulations dear. You must be so happy.
Me: Oh, I am, it is such a…
Mom: So when are you going to start your Ph.D.? Ha ha.
Me: Well actually, I’ve really been consider…
Mom: Because you have such a love of learning. Wait a minute. What Jerry? Tsk, I can’t hear him. WHAT JERRY?
(I hear my father in the background “Tell her I said congratulations”)
Mom: Your father says congratulations.
Me: Oh, tell him thank…
Mom: Jerry, Jerry, she says she’s going for her Ph.D. WHAT JERRY?
(I hear my father mumbling)
Mom: Your father says that’s wonderful.
Me: Tell him thank…
Mom: So we just got back from the doctor. I have terrible diarrhea and I can’t walk.
Me: You can’t walk?
Mom: No, I can’t walk.
Me: You can’t walk at all? How did you get to the doctor’s?
Mom: I have to hold onto everything. And I have a headache. But the diarrhea is better today.
Me (grimacing; I do not want to hear about anyone’s diarrhea): Oh, that’s good.
Mom: What dear?
Mom: So the doctor says I need to have another scan to check my brain.
Me. Ohhh.
Mom: What dear?
Mom: Wait a minute. JERRY! THERE’S SOMETHING WRONG WITH THIS PHONE AGAIN! So what else is new with you?
Me: Well…
Mom: I haven’t heard from you brother all week. And your sister must be enjoying her cruise. Good thing I didn’t go with this diarrhea. And not being able to walk.
(My mother obviously forgets that she was not invited to go on my sister’s HONEYMOON.)
Me: So I…
Mom: What dear?
Me: SO I WAS …
Mom: The doctor is very concerned about me. JERRY! I CAN’T HEAR WITH THIS PHONE!
Me: Ohhh.
Mom: What dear?

I went through 25 minutes of this: diarrhea, deafness, brain lesions (hers), did I think the lump on my grandson’s forehead was cancer because James would not be able to cope with that he would fall apart (it’s not cancer Ma, What dear?, IT’S NOT CANCER MA!!!!!!!), her neurologist was handsome and she finally told my father he was losing his mind, but she promised him she would take care of him and stick by him because he had been a good husband and that’s just the kind of person she is.

I did not get more than two dozen words in.

OY VEY! No wonder I’ve been in therapy for decades.