The Invincible Strength of True Love

In the Bible, 1 Corinthians 13, verses one to thirteen, is famous for the declaration that love is the most important thing in and beyond life. Every time I read it I am amazed by the simplicity and elegance of the message:  

1 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. 2 If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. 3 If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing. 

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres. 

8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 

13 And now these three remain: faith, hope and love. But the greatest of these is love.

With Elizabeth and Matt’s wedding on Saturday, I saw the lesson of Corinthians over and over in the presence of the loved ones who celebrated the day with us.

I saw it in Liddy and Matt themselves, how they rarely took their eyes from each other through the day and how they quietly exuded pure joy as they became husband and wife.

I made the liturgical stole Mother Susan is wearing last year as a gift for her.  She thoughtfully made a point of incorporating it in the ceremony.

It was so wonderful to proudly share the day with Matt’s family, his parents, his grandmother, his uncles and aunts, all of whom have welcomed Elizabeth into their arms unconditionally.

Three years ago, my parents, healthy and independent, were happy guests at Ryan’s wedding. My father, even though he is just over serious surgery for a broken hip and struggles to get around, told me he would do anything for Elizabeth and made a monumental effort to be there. He was palpably missing my mother.

Of course my sister, my cohort in laughter, irreverence and all around goofiness, was a huge part of making the day fun, along with her husband and oldest son.
 
Memories flooded me as I watched Mary Kate come down the aisle as Matron of Honor. I could see her the day Elizabeth was born, a two year old not quite sure what to make of her new baby sister.

Elizabeth and Mary Kate

James was so handsome as our usher. He had always been like his baby sister’s personal Court Jester. He was a constant, good natured source of entertainment for Elizabeth and would indulge her in playing any game she asked, singing and dancing along with goofy cartoons on TV or acting out scenarios she directed (usually involving dollies and/or Beverly Hills 90210 episodes).

Ryan gave Elizabeth away. As her other wonderful big brother, even though he was so much older, he also was always finding time to play with her, make silly faces, make her laugh.

My sister-in-law and I have been connected by marriage for over 35 years. She is one of the strongest, bravest, most indomitable women I have ever known. She is as gorgeous today as she was the day I met her. She was with us, along with one of her daughters, a beautiful young woman who, along with her five sisters, I am proud to call my niece.

Friends who have watched Elizabeth grow up surrounded us. These are friends who are true soul mates, people who are so good and good to me they never cease to amaze me with their endless loving kindness. Louise and Henry looked after my father for us and brought him home when he was not well enough to stay any longer, even though it meant they had to leave the reception early. Michael and Bill looked after me all day, getting my massively heavy power wheelchair in and out of the SUV multiple times, a huge outlay of energy and effort. Christine videotaped the wedding as a gift. Juanita and Michael are two of my favorite people in the world, elegant, charming, and, more than anything, kindred spirits. To say I am lucky to have all these people in my life does not even begin to do them justice.
 
As our youngest, Elizabeth held a special place in her father’s heart. With the other kids in school, she and her dad often spent their days together with long walks and trips to the park, just the two of them. She remembered him by carrying his pocket watch with her bouquet.

Ryan walking Elizabeth down the aisle.  Dennis' pocket watch is attached to her bouquet in memory of her dad.

Matt and Liddy’s friends embraced them with laughter and affectionate teasing throughout the day. His best man Jonathan, his friend since nursery school, gave a funny, touching toast that defined what a loyal and true friend Matt is.

My happiness was rounded out by running into other friends after the wedding at the church, by friends of Matt’s parents at the reception and by dear ones who couldn’t make it but were with us in spirit.

These people are the definition of love. The family members who spitefully declined Elizabeth’s loving invitations were not missed. They do not meet the criteria. Love is patient, love is kind. It keeps no record of wrongs.

It always protects. Love never fails.

And now these things remain: faith, hope and love. But the greatest of these is love.

Some more pictures:

Here comes the bride, escorted by her brother Ryan.

Elizabeth and Matt

One of the centerpieces we brought home.

The banner I made for them.

Banner close up

 My sister Cathy and I

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A Generous and Thoughtful MS Donation

My wonderfully talented cousin Steve is a skilled and versatile photographer. He (and his generous cohort, Bill Guy) recently supplied some of their photos of the 2011 One Lap of America to MotorTrend Magazine for the accompanying article. (I made a brief visit to the 2010 One Lap of America, brief because I got so lost in Southern New Jersey I was gone nearly as long Gilligan and his pals: http://www.nourishourselves.blogspot.com/2010/05/day-at-park.html)

The MotorTrend article is great and of course the pictures are the best!:

http://www.motortrend.com/features/performance/1106_the_2011_tire_rack_one_lap_of_america/viewall.html

Well, Steve and Bill, with incredible generosity, have donated their fee from the article to the MS Society in my honor!! I am so touched and flattered!

Steve, some of you will remember, was my childhood Howdy Doody companion.  We watched Saturday morning TV together every week after my dreaded ballet lesson (I was an appalling little ballerina). One year older than me, Steve has been like a big brother to me my whole life, only nicer. One example: when we were about 10 and 11 he was teaching me how to play a card game, but I misunderstood the rules. Essentially, I was totally cheating with every hand we played. But he never said a word, he just let me gleefully win game after game. That is the kind of guy he is.

Steve as he always looks to me, no matter how old we get:

Steve in real life (I told you he was a photographer!):

Thank you dear, dear cousin for being so thoughtful and for being a constant source of goodness in my life.   




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Mother of the Bride

Well, I have my dress for the wedding and it is hideous ok. It practically screams Mother of the Bride in all its beaded sparkliness. Well, Mother of the Bride or Las Vegas Showgirl. Or Mother of the Las Vegas Showgirl.

But it fits, and at this point that is all that matters.

I got it from Fat Ladies R Us and it reminds me a Bob Mackie creation. I never liked Bob Mackie.  In this creation I look like Carol Burnett. Except I’m shorter, fatter, have fewer teeth and I have brown hair, not red. I guess that means actually I look nothing like Carol Burnett. I just feel like her. When I put the dress on it feels as though I should be taking questions from the audience and tugging on my ear. Sigh.

Alright, it's not this bad. 

The most important thing is that Elizabeth has a wonderful day and that is all I want. The fact that I will actually have a dress on and not be sitting in the pew in my underwear will make her very happy indeed.




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The Soundtrack of Loss

World War I didn’t have a number at the time it was fought.  We didn’t realize another hellish nightmare would engulf our little planet within the next twenty or so years.  At the time it was called the Great War, although the only thing ‘great’ about it was the number of casualties.  More than 8 million soldiers were killed from July 1914 to November 1918.  The Armistice was officially signed the morning of November 11 of 1918, the eleventh hour of the eleventh day of the eleventh month.

The war was a slaughter, really.  It decimated several countries, most notably Britain and Germany, each of which lost nearly 15 percent of its active male population.  It upended long held perceptions, realigned class systems and led to a period of deep anguish and disillusionment for the many millions of people who had been directly affected by the horror of the conflict. 

In rural Sussex, England, Edward Elgar, the composer, had been able to hear the artillery fire in France echoing across the English Channel.  He was profoundly depressed by the war and the unspeakable toll it had taken.  His music until this point had been bombastic and rousing for the most part, but, now 61 and drawing close to the end of his career, he was moved to write something that was rather out of character.  As a tribute and an elegy, he created a cello concerto in four movements that was haunting and melancholy.    Unfortunately, its premier in 1919 was not auspicious.  Never having an opportunity to catch an audience, it failed to achieve a place in popular repertoires and soon faded into relative obscurity.

In 1965, at the age of 20, cello prodigy Jacqueline du Pré chose to resurrect and record the Elgar Cello Concerto with Sir John Barbirolli and the London Symphony Orchestra.  The resulting performance was passionate and stunning and quickly developed legendary status.  The Elgar Cello Concerto became one of her signature pieces. 

So a composition written to mourn a massacred generation now became a best seller almost fifty years later, interpreted brilliantly by a beaming 20 year old.  Jacqueline was classical music’s darling in the 1960’s and when she and pianist (and eventual conductor) Daniel Barenboim married in 1967 that just doubled the allure.  Their careers were on stellar tracks.   It seemed there were nothing but good things ahead.  Except that is not how it turned out.

When she was 26, Jacqueline began to notice a lack of sensation in her fingers and elsewhere in her body.  She continued to play, but experienced more and more difficulty, her symptoms progressed and, emotionally fraught, her personal life became chaotic.  She was finally diagnosed with multiple sclerosis.  Despite attempts to defy the disease, she played her final public concert at the age of 28 and died of MS related causes 14 years later, when she was just 42.

MS is a relentless thief that had no cure when Jackie was diagnosed in the early 1970’s and is still incurable today, almost forty years later.  It is utterly unpredictable.  Some people never experience anything more than mild symptoms that come and go.  Others have a rapid and deadly decline.  Most of the rest of us fall in between, with a more gradual but undeniable and grievous progression.  There is no way of telling who will have what development.  You just have to wait and see. 

There are medicines available now that can slow the progression down.  Called disease modifying therapies, they all have considerable and serious side effects.  And they don’t always work.  If they do work for a time, it usually is only a few years.

Because MS affects nerves, it can cause damage and malfunction in any part of the body.  Most of us experience fatigue, numbness and burning in our limbs, severe, painful muscle spasms and, eventually, considerable difficulty with ambulation.  Becoming immobile is like approaching the edge of a slippery slope.  Although MS is not technically fatal, the accompanying complications – pressure sores, bladder dysfunction, breathing and swallowing problems – are the things that shorten our lives.

Then there are the other costs of multiple sclerosis.  In my case it has destroyed my career as a business executive and, as a result, my way of life.  I loved my job, I loved to travel, I was so happy and, with my children almost grown, I looked forward to years of productivity and pleasure ahead.  The future seemed limitless.

But I can no longer take care of myself alone.  I have no more independence.  I cannot run to pick up a container of milk or do my own laundry or clean my home.  My marvelous, charming old house, which was my dream-come-true that I bought all on my own, is slipping out of my hands, as I can no longer afford it.  My children, who already lost their father when they were little, have had a terrible time accepting my illness.  One has gone so far as to cut me out of his life entirely, which is the worst, most excruciating loss of them all.  It is so unfair to expect them to take care of their mother and their own children at the same time.  As a widow with no significant other, there is no other caretaker.  It will not be long before I have to move to a care facility, as I can barely take more than a few steps anymore.  With breathtaking, humiliating thoroughness, in six years I have gone from affluence to poverty, from walking to a wheelchair, from health to disability.

There are, sadly, all sorts of tragedies in our world.  Huge, global events like wars.  Public losses of talents like Jacqueline du Pré’s.  And millions of anonymous, small (in the scheme of things) losses like that of the life I used to lead.  All cause grieving.  And now when I think of loss, in my head, I hear the eloquent, elegiac melody created by Edward Elgar out of his own pain almost one hundred years ago.   Played by Jackie in her youthful prime, conducted by Daniel Barenboim, knowing how their stories will play out, makes this performance heartbreakingly poignant.   For me, it is the soundtrack of loss.

(for e-mail readers: http://youtu.be/UUgdbqt2ON0)

Jaqueline du Pré’s birth anniversary is January 26.  WQXR, the New York classical radio station, is graciously planning to honor her that day by featuring one of her prominent performances, although as of this writing it has not been decided which one.  I am so grateful to them for giving her the recognition she deserves.

In the movie Jackie and Hilary, about the relationship between Jackie and her older sister, there is a scene that absolutely captures what it is like every time you remember what MS has stolen from you.  I include it in my annual du Pré post to help people understand how devastating it feels and how truly shattering it is.






(for e-mail readers: http://youtu.be/TpN41toUv-w)

I would ask all of you reading this to remember those of us, approximately half a million in the United States, who are afflicted with multiple sclerosis and, if you are able, to support the organizations that provide services and fund research seeking a cure.

The National MS Society
Multiple Sclerosis Foundation
Myelin Repair Foundation

(I have also posted this entry on my MS Renegade blog)



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It's a Wrap

The hideous swelling in my legs has finally been diagnosed as lymphedema – a failure of the lymph system to do its job properly. We are protected from infection by the constant movement of lymph fluid throughout our body. But when trauma or some sort of damage interferes with the process, the result is pooling of the fluid below where the impairment is. I have spinal cord damage and am increasingly immobile from MS, so my legs are the victims.

I was lucky to find a lymphedema treatment center close to my home. While doing the medical history, the physical therapist said “Ok, so which of your doctors diagnosed the lymphedema?”

Pause here for ironic laughter.

Because I am the one who diagnosed it. My PCP, whom I really do love, kept treating me with diuretics as if it were regular fluid. Can’t tell you how much fun that was, running to the bathroom every ten minutes. And that is sarcasm because of course I cannot run, I can barely stagger three feet. He was solicitous but could not give me a reason for the swelling.

My neurologist, who I used to like, the one who is supposedly an expert on MS, claimed the swelling was due to my sleep apnea. The only problem is, I don’t have sleep apnea. Although he, a man who I swear never slept with me, is convinced I do. Even though I have no symptoms and no one that I actually have slept in proximity to has ever told me that I do. But for some reason he is absolutely fixated on me going for a sleep study. Here is his subtle and gentle way of persuading me after I tearfully told him, from my wheelchair, that I am depressed, can no longer walk, have barely left the house in a year and I can’t wear shoes because my feet are so swollen:

Dr. H: You have swelling because you have sleep apnea and if you don’t go for a sleep study and treat it you are going to die.
Me: speechless with mouth hanging open
Dr. H: You need to treat your sleep apnea.
Me: But…
Dr. H: Or you’re going to die.
Me: But…
Dr. H: That’s what’s going to happen.
Me: But…
Dr. H: You’re going to die.
Me: But…

He has wanted me to go for a sleep study ever since I complained about being tired three years ago. Number one, fatigue is a primary symptom in MS. Number two, I am on a medication which has a black box warning that states it may cause you to fall asleep without warning during daily activities. Two excellent reasons for being tired. Not to mention not sleeping well because of pain in my broken shoulder. Another excellent reason for being tired. But he went straight to sleep apnea and sleep studies, dismissing the medication warning as ‘hardly ever happening’. I declined the sleep study for a myriad of reasons, mostly because I know I don’t snore, so I feel it would be a total waste of time and money.

We repeated the little scenario above several times, he gave my legs a perfunctory glance and agreed to my suggestion of actually addressing the swelling with some form of treatment. MY suggestion, not his. And I only came up with the treatment protocol and diagnosis by Googling ‘leg swelling and MS’. Lo and behold, up pops an entire clinical bulletin, sponsored by the MS Society, which outlines the connection of lymphedema to MS, describes the causes and the treatment. The treatment which, interestingly enough, does not include either diuretics or sleep studies. It is directly correlated to immobility for MS patients and, sure enough, it started as I became less and less able to walk. We are meant to be weight bearing beings and when we are sitting all the time things go wonky. Although in my case, because it is me, things go extra wonky.

So back to my PCP I went, the one who doesn’t threaten me with death. I showed him the clinical bulletin and he was totally respectful and supportive. I found a lymphedema center and set up the appointment. And I started treatment today.

A picture of my actual leg is too appalling to contemplate, so I'm treating you to this lovely drawing instead.

It is not fun. Called decongestive therapy, the key principal is compression bandaging. My left leg is now encased in thick, firm foam and wrapped tightly with elastic bandages. I have to have them re-applied daily, and wear them continuously, for four weeks. Bulky and heavy, it is incredibly uncomfortable and, because my legs are sensitive due to the MS, painful as well. But I am trying so hard to be positive, and grateful. The therapists could not be nicer and they are super enthusiastic about the outcome. I want to be on board, so I am working determinedly at being appreciative that there is a treatment available and focusing on imagining the results.

My goal: to be able to wear shoes to Elizabeth’s wedding in February.

Wish me luck!


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Just for Fun

I've been fooling around with the background to reflect the winter, but I cannot get it to look the way I want and now I am too tired to play with it anymore. I'll try again tomorrow.

In the meantime, I did up a little slideshow to go along with one of my favorite holiday pieces, Do Something Nice for Your Mother by Garrison Keillor. It never fails to make me laugh.

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Changing Times

As I become more and more dependent on my wheelchair and more housebound because my car is not outfitted for it, I find I have adjusted my objectives.

Dream Car then:

Dream Car now:

I am not close to owning either one, but I can dream.  :)  Or ask Santa.
 




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