an other imposed zen sort of life

One of our children is very frustrated with me because whenever she asks me how I'm doing, I always say fine or I'm happy, because right then I am.  ALS is one of those diseases that forces us to  live in the now.

This morning, we had one of those lovely "ALS Moments" which had followed a similarly lovely "ALS weekend". And both involved the toilet.  At one point, I was with Pat while he was on the throne and I had to ask him, "Do you want me to call the girls?"   It was that bad.  But we got through it and now he's all good, and so I'M HAPPY.  Because now he's better and the nurse (who had been late) is here and everything is fine again. For now.

And to be honest, my main concern this morning was
Please, please...don't die on the toilet like Elvis....

This wasn't supposed to happen

This is the Blog post I never thought I would write.

Today, Pat's outlived his prognosis by one day.   When he was diagnosed on May 24, 2012 the rule of thumb was he would live between 2-5 years.  Now he's at Five Years and one day. He has outlived his handicap sticker, three sets of battery vents, two vans, two speech machines, two nursing agencies and a dog.   He's a tenacious son of a gun.

This is not true of everyone  We know of those who died well within those parameters. This is a tough disease. ALS is hard on everyone.  We know medical professionals who have either quit or are planning on it because they can't stand all the deaths of wonderful people they've grown to know.

Of course, we've had help, I cannot stress enough how important the Duke ALS clinic with Dr. Bedlack and his gang have been.  The Durham VA Hospital comes through every time and their care for Pat has been phenomenal. Duke University Hospital and our local people, Drs. Bennett and McQueen at Alamance Eye Nose and Throat go above and beyond when we need them. The Bayada Nursing team got us off to a great start and we're looking forward to working with Full Coverage Private Duty Nursing now.

Since Pat has been diagnosed our grandchildren have also gone through changes. The oldest went from elementary school to worrying about college choices. And we have three newbies who came down to stay and be loved.

Don't pity us. We are here, still plugging away because of the choices we made.  Compassion,yes- such as you would have for any fellow creature of God - but don't pity us.  We have a wonderful life. As Ann Landers used to  ask, " are you better off with him or without?"  Everyday, my answer is "WITH!" and every day, I silently thank Pat for waking up.


Here's who we were at the beginning of the rodeo. That baby in arms was born after the diagnosis.



And here's where we are now.

 and here are the newbies to the family. The youngest is three. We anticipate meeting his children.

Here's to another five years and beyond.

CReATE-ive Red hot Valentines

Nah, this isn't going to be about love or romance but rather inflammation....One of the benefits of having a really terrible disease in the 21st century, is the plethora of information to be found on the interweb. The trick is to make sure you're getting good skinny rather than bad.   Pat  belongs to a group called CReATE.  Here's the downlow on it embedded in an email.

The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.

www.RDCRN.org/CReATe Every once in awhile, they have something called WEBINARS wherein you can either listen in to people smarter than we discuss various topics or you can actually speak to whatever they are discussing.  We're such ignorant chickens, we usually just eavesdrop and they are always interesting.   This past week was all about inflammation, which apparently is a major health bugaboo.  Here is a quote straight from MEDICAL NEWS TODAY about inflammation: Chronic inflammation can eventually cause several diseases and conditions, including some cancers, rheumatoid arthritis, atherosclerosis, periodontitis, and hay fever You will note the absence of even a mention  of ALS.But we're used to being a wallflower at most medical dances.  So, we decided, since again, THERE ARE NO DRUGS FOR ALS..to self -experiment.  We're going for turmeric in a big way, which is an historically proven, safe anti-inflammatory.  Somewhere along the way, I decided what's good for the gander is good for the goose, therefore I've started taking all of Pat's supplements. So in addition to the protandim and lunasin, I'm hitting the turmeric trail.  I can't let him outlive me.

A right restored

A while back during a video conference with our favorite Dapper Dan, Dr. Bedlack, he commented "you don't seem to mind self-experimentation."  After laughing about that comment, we agreed.  It's not like we going to cut off Pat's head and put it in a strudel pan, but at a certain point when one has this sort of disease, and there is no cure, and no real treatments, you're sort of  willing to try anything. I mean, what's the worse that could happen???

So the news about the possible fast-tracking of the RIGHT TO TRY legislation is something that we can get excited about.   This legislation means that people with terminal illnesses who have pretty short term stale dates can bypass the usual FDA's years long approval process and try drugs that demonstrate potential help.  

I think those of us of a certain age (as the French say) remember those horrendous pictures of the Thalidomide babies in Life magazine, which is why the FDA has such rigorous testing. But for those families battling ALS and other diseases, this might be our only hope.

A couple of years ago, our state legislature approved CBD oil, which is a cannabis derivative.   Pat uses a couple of snorts of that a day and between that and the other supplements he takes, his progression is pretty slow.

Life is a gamble, whether you're floating on a raft trying to escape a country that is in chaos or wanting to experiment with a partially tested drug.  We're grown-ups, we know the risks. We want to try.

https://en.wikipedia.org/wiki/Thalidomide



https://en.wikipedia.org/wiki/The_Brain_That_Wouldn't_Die

The Mitford Sisters and Steve Gleason

Awhile back I read the  memoirs of one of the Mitford Sisters. They were those silly English girls  with a father who used to chase them instead of foxes  around the countryside on his horse (which could explain why some of them became either nazis or socialists.)   In it, there was a discussion of changing the log fireplaces into gas heat or something like that.  As the memoirist wrote, it marked the "end of the age of luxury and the beginning of the age of comfort."

Last week we watched GLEASON, the story of Steve Gleason, the New Orlean's Saints linebacker who is now in about the same stage of his ALS as Pat.  We both cried because he and his wife are SO YOUNG..and they have a baby and it was not what either of them pictured for their life together.   We had a chance to raise our girls and although Pat never hunted them through our pastures while riding his horse, we did have pretty good times, until the boys arrived and it mainly turned to worry.  We're still having fun with the grandchildren, but we both know that this is the gravy on our lives.

Steve Gleason has started TEAM GLEASON with the motto NO WHITE FLAGS.  This organization's task is to promote technology which Steve believes can replace many of the functions that nature has provided but ALS has removed from people.

We are big believers in this too, Pat's Permobile gets him around and the stairlift gets him to the upper levels of the house.  He also is  using a vent for breathing, a speech machine for talking, and  a mechanical arm to help him eat his food and play wizard chess.  



Steve's Team Gleason is SO ADAMANT about this that when Medicare didn't provide word processing/internet capable  speech devices for patients, his group stepped in, gave them away and made it possible for those people to communicate again.  The GLEASON ACT, which corrected this, was named for him.

https://www.govtrack.us/congress/bills/114/s984/text/es

http://www.teamgleason.org/letter2/

In the movie Steve and his wife struggle with the disease, caring for the son, reconciling with parents  and trying to get this great organization started all the while Steve's condition is deteriorating.  It is heartbreaking, but as much good work that they do together, from what I could see, they don't understand the importance of comfort.    The movie is a relentless look at living with ALS and this is what takes me back to the Mitford girls.

 The age of technology has replaced the age of comfort.  Steve is a whiz at using his devices, his wife is a whiz at caring for him.  They are a thoroughly modern couple but their bedroom needs an old fashioned hand to make it comfortable. I want to go down and help them organize their room to make it a safe, cozy place for them to visit at night when they are alone with the machines.  I want to get Steve out of that hospital bed and into one of those platform beds that can help him sleep comfortably with his wife so that late at night they can lie down together, hold hands and pretend it is like it used to be.  I want to get them nice dressers to hold all the trach supplies so they don't have to look at everything all the time and be constantly reminded of ALS.  They have done so much for all of us who suffer with this. I want to do this for them.  Because they could be our children and I want to help them.

https://www.tempurpedic.com/bases-and-foundations/

Little and big things

It started with my cold.  I was as sick as I'd been in years (discounting my bout of food poisoning last winter).
Then Pat caught it, and of course, with an ALS patient, nothing is simple.  Yesterday afternoon was probably the scariest time we've had since the trach.   Infection is the bugaboo of our lives, and when something takes hold that quickly and firmly, you just hold on and wait it out.  Dr. Bedlack had told us Superman Christopher Reeves died from an infected bedsore. Germs are our kryptonite.  We walk a thin line in our house. We have to attack infections quickly, but not use antibiotics so much that they are rendered useless.

On Facebook in November, there is a common thread.  Many of my friends write thankfulness posts.

Here's mine.
I"m thankful for big pharma.  People love to hate them because you know, they are big and they make alot of money and don't seem to care. BUT BY GOLLY...without the extremely costly research, testing and marketing, I wouldn't have had the z-pac to give to Pat when he needed it. SO THANK YOU BIG PHARMA...you've made me a happy camper.

Here's another corporate shout out.  Pampers, Huggies, and whoever else makes baby wipes. If you think about it, if we didn't have disposable wipes, we would have to use rags to clean up messes, wipe faces, etc. And that means more laundry, folding and all that other stuff I hate. So thank you Kimberly Clark, Proctor and Gamble and any other corporation that makes home health care easier.

What about cleaning supplies?  Here's a big thank you to Clorox bleach spray.  We can disinfect the bathroom sink in about five seconds...Plastic trash bags? We just tie them up, toss the stuff and don't have to worry about disinfecting the garbage cans.  Plastic cups, plastic straws?  use 'em toss 'em.   Infection control is inversely proportional to landfill control, but in this case I DON'T CARE...

Thank you  Permobile.  When Pat went back to bed, Thor and I kept watch. I was reading THE IMMORTAL LIFE OF HENRIETTA LACKS but that chair is so comfortable, when I sit it in, I'm able to nap as easily as in any leather recliner.  So I did.

Thank you to our girls.  They took me seriously when I told them not to bring the grands around, but they knew enough to visit themselves.   Clare brought me Kung Pao, Anna brought scotch and we watched a really terrible silly movie,  Laina is bringing St. Paul's Barbque tonight.  Emma gets a pass because there is sickness in her own family.

As Laina texted this morning, it was a dangerous Battle of the Boogers, but we are winning...

...so far.

THANKS BE TO GOD.

Paper towels from hell

It's been too long since we last met.  Lots of changes. Pat nearly died and lo and behold, just as the good people at Duke Hospital called for that code blue or whatever that is so scary, our Rector walked in. Proof that we are not alone...and not in that X files sort of way.
Anyhoo, Pat was trached, our lives changed again and WE ARE STILL HERE!

The biggest change was the advent of the nurses, for which we are immensely grateful.  I was drowning, due to Pat's deteriorating condition the summer of 2014.  I had quit working but we were still tending the babies twice a week.  I was about to lose my mind, then unbeknownst to us,  we learned (following the procedure), the VA provides nurses for trached patients.

 After a weeks stay at the Duke ICU, we came home to what seemed to be a MILLION PEOPLE IN OUR HOUSE...it was the welcoming/ check in committee from the nursing company and I just about slit my throat. Pat was useless.  He sat at his dynovox and all he did was tell everyone (who were all women) how pretty they were and I was losing my mind. They were doing what they had to do and I was able to contain myself but MY GOD....They presented me with a HUGE ROLL  of paper towels, telling me that now that they were here, in one of those bizarre insurance things, they would be providing us with enough paper towels (seemingly to encircle the globe twenty times over) so I wouldn't ever have to buy them again. It was a bizarre rendering of LETS MAKE A DEAL I traded my home to complete strangers, but I get a lifetime supply of really scratchy huge rolls of paper towels. The only thing missing was Don Pardo.

 I decided to focus my wrath/anxiety/insanity on the paper towels and it got me through the night.

In honor of THE CLEVELAND INDIANS WORLD SERIES, I have provided a baseball comparison for scale. GO TRIBE

Whispers

Our bathroom renovation has begun and there is  plastic sheeting that protects our bedroom from the dust that such work entails.  This sheeting runs from wall to wall and whenever I walk by it, my air wake creates a gentle movement that has reminds me of the veil in HARRY POTTER and  THE ORDER OF THE PHOENIX wherein the people who have gone on before, whisper as the living walk by.

I'm waiting to hear from Sirius Black soon.

All Pretense Aside

THE VOYAGE OF THE DAWN TREADER is the third of CS Lewis' Chronicles of Narnia series.  In it, one of the characters, the aptly named, Eustace Scrubb, is a vile little fellow.  In Narnia, he becomes a dragon which is not all that great and with the help of Aslan, he endures a  painful shedding of the tough scales to reveal the wonderful boy he really is at heart.

CS Lewis expands on that theme of shedding our mortal coils of pride, greed etc. in his book for adults, THE GREAT DIVORCE.  Everyone has to face their behaviors or human side and cast them aside in order to reach heaven. If your possessions and personality give you comfort on earth, it's hard to let go. Some can't do it and remain locked forever in a grey purgatory.

I've been pretty lucky.  I've taken care of three people as they learned to cast off their mortal coils.  My parents and now, my husband.  I've watched them come to an understanding that they have a stale date, as yet unknown for Pat, but it is there.  And I've REALLY been lucky because in all cases, it's been an easy road for me.

My father was, like many people, a complicated man with many layers and for so many years, not that easy to get along with.  When he got his stale date on the anniversary of Mom's death, his shedding of his dragon hide began immediately.   His layers peeled away as he sat on our front porch, prayed and thought through his life.  He went through his self examination with a fine tooth comb that only a Lutheran PK could manipulate and at the end, revealed himself to be the sweet man we all suspected was there.  It made my job easier as his caregiver because he appreciated everything that was done for him, and although there may have been some regrets he couldn't get to that place while he was still able bodied, I think we were all grateful we got there at last.

In the God Squad column this week, Rabbi Marc Gellman addresses this issue of what to do when your caregiveree isn't that wonderful.  I hope I'm like Dad when it's my turn to be on the receiving end and not that lady.

http://www.tmsfeatures.com/columns/religion/the-god-squad/25506609.html?articleURL=http://rss.tmsfeatures.com/websvc-bin/rss_story_read.cgi?resid=201403111830TMS_____GOD_SQUD_ctngs-a_20140313

We Shall Return

The last big trip we made before we got the diagnosis was to my birthplace, Memphis, with the family newlyweds.We stayed at the Peabody, had cocktails in the lobby while watching the ducks parade around and then suppered at the Rendezvous just down the alley, past the dumpster. We almost didn't make it though. It was around this time of year and a spring storm chose the Memphis airport to be the tunnel for the front that was coming through.  It was the rockiest landing Pat said he'd ever endured and with his business international travels, he'd made quite a few landings in suspect weather.  We looked at each other and said, "Well, if this is it, then we're good to go." and held hands.  I felt a little sorry for our daughter and her new husband, because they were going to miss out on the marriage rollercoaster, but it turns out, they didn't even miss out on the ribs.

Before Pat got so sick, I used to pray he would just get happy; be content with his life and not work so hard that he could barely move at night.  I didn't want him to get ALS, but after the initial horror of it all, he has become happy; happier than I have ever known him.  He enjoys sitting around with me, watching the grands parade through the house and planning the next book he's going to read.

There was an article in the paper awhile back about a woman who after being diagnosed with a terminal illness (I'm thinking it was stage 4 cancer) became happy for the first time in her life. The woman in the article asks, "why did I have to be threatened with death to become happy?" It turns out this is not an unusual phenomenon.

 For those of us familiar with the TV show HOUSE, you may remember the episode where the crippled curmudgeon tries to expose the happy cancer kids for the frauds they are.  Of course, it didn't work.  They really were happy.  Not happy to be sick, but happy children who happened to have that horrible sword dangling overhead.

Today is Ash Wednesday, the day that we who go to liturgical churches are smeared with oily palm ashes and reminded that "we are dust and to dust we will return."  I'm wondering if this liturgy about death is really to get our tushies in gear and to make us remember to live.

Here's a link to the liturgy we will use today.

http://www.liturgies.net/Lent/AshWednesday.htm
http://www.liturgies.net/Lent/AshWednesday.htm

The Best Laid Plans...

..of mice and men oft go astray.


This snow better be nice and be GONE in 24 hours. We have tickets to the sold out BOOK OF MORMON at the DPAC on Saturday!

The Modern Laocoon

We finally made it back to church after an absence of six weeks.  

As usual, the readings were stark in their relevance.  

Our first Psalm reading upon our return to church was 116 which included this verse 

 The cords of death entangled me,
    the anguish of the grave came over me;
    I was overcome by distress and sorrow.

We have various machines to help with the ridiculous amounts of mucous ALS patients create. There is a vest that pounds  Pat's chest to loosen the mucous, a cough assist machine that helps him bring the loosened  gunk up and then what I call a snot sucker that deposits it neatly into a disgusting plastic spittoon.  It was these machines that enabled us to avoid the ER and we are exceedingly grateful for them.  However, every one of of these machines has a power cord as well as a flexible hose that is the conduit between the patient and the machine. The pounder has two flexible hoses that are filled with pulsating air.  Dealing with these double headed hydras as they envelop my body detonates the latent F-bombs  in my head. 

Even as I wrestle these these writhing, slithering bodies into submission, I remember though that, for us, they are cords of life.

Our youngest daughter and her family recently moved back to God's country (or I guess I should say COUNTY).  In fact, they live right down the street from us.

They have two children, one toddler girl who refuses to talk, and one five year old girl who can't stop.  The five year old resides in that funny realm somewhere between fantasy, reality and insanity.  We notice there is alot more glitter on the couch since their arrival from Japan, and other than BOB's gasp of dismay upon seeing, PINK babies in the toy chest that had been previously the home of nothing but steel gray transformers and toy guns, we've all adapted well to their return.

Miss Mess 3 and I were discussing ALS and the effect on her Pappy.  She was bemoaning the fact he couldn't lift his arms any longer and she said, "It's like his battery died."  This was about the most succinct description of ALS I'd ever heard.   And then she proceeded to tell me how she is going to marry Sonic the Hedgehog and have his babies.

Not yet

We probably have more end of life discussions than your normal household.  We have to.  I want to be perfectly clear on Pat's desires because I don't want him mad at me for all eternity,  if I accidently send  him home before his time.  We know he has a fatal condition and so we are perfectly prepared for the worst, but there is always that small voice at the back of our heads that whispers, "not yet."

We've just been through about three weeks of intermittent illnesses of varying sorts, all of which could have easily gone way south at any time.  After the first bout, when we made it through the night and we discussed plans for the future, the determination was no midnight emergency room visits for us.  We have most of the equipment necessary to deal with Pat's issues and I don't want his last earthly situation to be alone in a room surrounded by the same technology we have here.  It may end up like that, but as far as we can control things, we say NO.

I think we're on the comeback trail with this last bit of sickness.  This has been a grueling time, very tiring, but spiked with fun and visits from family and friends.  The biggest birthday party in the world happened and we welcomed home our youngest daughter and her family from the far side of the world .  Our girls drop by and gag at the snot collected in the de-gunker, but they return the next day with their families.  The baby is crabby because he, too, is recovering from bronchitis and we all have survived that arctic cyclone, the polar vortex. (Of course I had to get that in there.)

There is so much loveliness in living. The sun is shining, it should warm up quite nicely for the rest of the week.  Is it any wonder, we both whisper, "not yet."

Happy Birthday STEPHEN HAWKING, 72 years old ALS patient who for over 40 years has digitally shouted "NOT YET!".

Baby it's cold outside

I remember Dad on Saturday evenings, fiddling with the dials on the radio trying to catch the Ole Miss football games.  It was a long way from Oxford, Mississippi to Northeast Ohio and he was desperate to hear something.  It was also a long way from then to the 500 ESPN channels we have now.  He would alternately scream SHIT or HOTTY TODDY and looking back, I don't know if it was a commentary on the fragility of the signal or our team.  This was between the golden years  of Charlie Conerly and the second coming embodied in Archie Manning. (It was probably around the time that Charlie was making money as the first Marlboro Man. He was a handsome devil and looked good on a horse.)

I now feel Dad's pain.  One of the unexpected consequences of this ALS rodeo is the daily fight we have in the van.  I have never understood the heating/defrosting systems in automobiles. Its why I moved south for goodness sake so that I wouldn't have to mess with the damn things. For defrosting the windshield, I find my VISA card works just fine and I have always kept gloves handy so I wouldn't have to worry about about anything else. I have no problem with turning on the AC in the summer. You just hit a button and it's on.

Unfortuately, one ALS sympton is an out of whack metabolism. Pat runs hot and cold and it is NEVER conveniently. Rather than cold in the summer and hot in the winter, it's t'other way around.  So whenever we've started driving down the road in the van, he's having to tell me how to operate the heating system.  I end up mad because he's hard to understand now and he's frustrated and it quickly becomes one of those "Can this marriage be saved?" issues. Finally, I understood the problem.  

Somewhere near The Company Shop on a recent trip to church I screamed,

"I can't do analog! I'm a digital sort of person." 

 It made me feel better, even if Pat didn't get any warmer from that thought. 

There aren't enough words in the world or My Oscar Speech. You can cue the music anytime it gets boring.

Today I am making a feeble attempt to thank people who have been such good friends, neighbors and  family to us over this past 18 months.

First of all, I am very thankful that our daughters live nearby and come to help, visit and bring their famlies. I'm also very glad that they have taken over the turkey duty. (and here I have to thank the sons in laws too, because they are cookers also and do alot of the holiday feasts.)

We won't get to eat that turkey because it was consumed in Okinawa 12 hours ago.  Maybe next year we'll get a sample.

And I must include in these thanks, our daughters' in-laws. They have treated us as family all along.  Whenever we've had to run to the hospital, whether those scary visits at the ER or the happy ones at the Birthing Unit, our family nurse was there popping in to visit.  She also has a very active prayer group and when I've needed the big guns, she hasn't failed me.  And her daughter gives the most marvelous facials!

Our Virginia extended family has been so wonderful with cards,  notes, emergency babysitting when I couldn't do  and other forms of support we could never thank them enough. 

 Closer to home, we have the local in-laws who have been so very good to us and ours with notes, prayers and help.  

I think we're lucky that our daughters all married sons from fine families.  

The other family that must be mentioned is our church family.  The altar guild brings us beautiful flowers when we can't make it to see them in person. St. Martha's Guild   provided a prayer shawl for Pat that does much more than keep his knobby knees warm at night.  A couple of men came to paint the shed. One family has sent Pat a card every week since his diagnosis. Another lovely woman brings us flan because she knows how difficult it is for Pat to swallow. Others have left bottles of wine, delicious little cheese snaps,  cheese cakes and other delicacies.  I can't forget the friend who seeing my proposed menu on Facebook one night, brought me the ingredients and stayed to visit.  Her husband later brought a play pen for Dougielou.  One family in particular will come over and bring a portion of whatever they're eating and they have provided many a wonderful meal when I was too pooped to prepare.  They have provided smoked turkeys and colorful mums, as well as an offer to carve the pumpkin.  We love the visits, casual drive-bys as well as the drop ins for cocktail hour. Our church secretary will check on us every week to see if she needs to open the door for the healing service.  Our church family will not allow us to be forgotten which can happen with this sort of illness. 

Our non-church friends are wonderful also. Some take us out for Mexican food and another climbed up on the roof and finished painting the windows that Pat could no longer reach. One friend will drop by on her way home from work at Elon U. Just to check on how we're doing.

Faraway family have made the trip. Pat's parents hopped on a plane, and despite his mother forgetting her makeup ( a tragedy for a former Ole Miss Cutie), we had a great time.  His brother from North Dakota and sister from Alabama drove up for a quick visit and we had a lovely time eating chicken pie from our church under the carport.

My cousin, from Michigan who is a speech pathologist, gives me good advice on new technology available to assist Pat's speech. Thanks to her and Mr. Zuckerman for providing a path to reconnect after all these years.

My own siblings have all made the trek at least twice and I think the thing that I appreciate most is that I know they would do it even if I weren't here. They are that attached to Pat, for himself.  

And of course, I cannot forget the grandchildren.  One visit from any or all of them blows all thought of illness out of our heads.  They are wonderfully insane and oftentimes bad, but always beloved.

So you see, there aren't enough words to express thanks for all the kindnesses.  In this way I do think ALS has been a blessing.  All that goodness is out there.  I wonder if sometime, we get these sort of  slaps in the face to appreciate them.  Don't wait for that please.  

More Life Lessons Learned Late

Just because you or someone you love has Lou Gherig's, doesn't mean life stops.  Things still happen.  Children from the far side of the world decide to move back home.  The family business must be attended to and sometimes truck tires come flying down the super and hit your front fender.

The last thing happened to us on the way home from Durham VA Medical Center.  It was at the cusp of rush hour.  I was on the inner third lane and there was no where to go.  So I remembered our sailing days when something happens that could lose lives.  I grabbed the tiller of the Dodge Caravan and stayed on course.  I had seen the tire pop off the truck, whether it was on the flatbed or on an axle I cannot say, but it disengaged and barreled toward us at a phenomenal speed.  The trajectory was such that I knew it would either have missed us by an inch or nailed the right front quarter of the van. It did the latter, and only later did we both wonder why the airbags didn't deploy and that was one of the many blessings that occurred in those 5 seconds.  No one else was hit, the state trooper surmised it bounced off us and sailed over the other cars and  into the woods of Hillsborough. We were able to hobble off the highway, as the other drivers realized what had happened and slowed down to let us cross three lanes onto the shoulder.

And then of course, the comedy began.  I couldn't find the hazard button.  Pat had no idea where it was either.  While I called 911, we were both frantically searching for it.  As I was describing the incident to the dispatcher, (and why do they always want to know what color the car is?)  Pat found it. Unfortunately, that day his voice didn't work too well and I couldn't understand what he was saying. He was strapped in  the Permobile in the back. He couldn't lean forward and he can't raised his arms to point.  At this point I was laughing at the whole thing while trying to talk to 911. How could we manage to survive the impact, but not be able to find the hazard button?   Finally, after great effort he was able to communicate to me where it was located and we  settled in and waited for Trooper AJ Gurney, a handsome fellow who was quite kind.

Life doesn't stop and neither do blessings.  If the airbags had deployed, I think many people could have been hurt. I couldn't have controlled that tank of a van and I would have slammed into another car. It was a beautiful clear fall day so the other drivers could see what happened. We had a sweet tow fellow and trooper who helped get Pat out of the van safely. We have daughters who live near enough to come rescue us when things like this happen. And they bring grandsons who are always so interested in crashes and crackups, the conversation is never allowed to get maudlin.

When we first got news about Pat's ALS, I thought I heard a burglar one night.  I was lying in bed and I thought, "go ahead kill us and take everything."  That is known as despair and at that lowest point,  I probably felt closer to Judas than Jesus.  The feeling soon passed and every day since, we feel blessed by life and living.  Some days we feel more blessed than others.

Raking leaves is not an activity for those with OCD.  I have other neuroses, non of which interfere with this pleasant autumn activity. My ADDism is perfectly suited for raking leaves and raising children.  Children's messes and noises rarely bothered me.  I was so easily distracted, I often forgot why they were upset and we would just go on to a new activity.

It was also good for our traveling days of following Pat's  ship.  I realized that if I had my passport, glasses and a credit card I was good to go.  A driver's license was handy, but not a necessity.  We had four children which helped too, it was a nice even number to keep track of. They soon learned to pack for themselves and I rarely cared what they wore as long as they were decent. Our youngest forgot to pack extra clothes for one trip and hence she wore the same thing for a week.  She was, I think, around 2. She has since learned to pack more than one set of undies and totes her own children around the world by herself with great aplomb.

This casualness which was so helpful to me with the kids, isn't so good now.   I find that I have to notice messes and have learned to pick up trash immediately, because there isn't anyone (Pat) coming behind to do it.  This has been one of the hardest lessons.

Pat is the clean freak in our relationship.  He told me one of his biggest fears when we learned about the ALS was that  his beard would get untidy because he wouldn't be able to trim it properly.  I have learned to do that and to also pick up all the bits of leaves that come in through the doors on windy fall days.

Pat is very good about not nagging me when I miss something on the floor, but I am getting better at keeping things straight. I think this marriage can be saved.

Fred Astaire He Ain't

We had the opportunity awhile back to attend Alamance County DANCING WITH THE STARS GALA.  It was a local whoop de doo and our son in law was one of the stars.  This was a fundraiser for Little Pink Houses of Hope, an organization that provides really cool beach vacations for families undergoing the stress of dealing with breast cancer. It is a very worthy cause and one I can get on board with because it is about fun, and I'm all over that.

Our dancer didn't win, because I think he just doesn't have the twerking gene, but also, one of the other stars had a secret weapon...he was a tap dancer, which blew all of the competition out of the house. It was so much fun.

On the way home though, Pat verbalized something I'd been trying to gel in my head.  He said, "This is how well organized cancer causes are. This fundraiser was so specialized.  This was for vacations.  ALS is still just trying to get research money and just get the word out."  I think the Catfish Hunter ALS closet in Raleigh has loaner beach wheelchairs if you want to borrow them.

The ALS association is doing a grand job of getting the word out.  There are walks, beer festivals and other things but compared to the behemoth that is the Susan Komen effort, we are the red headed step children of the disease front.  We're jumping up and down screaming..."LOOKY HERE LOOKY HERE!"

And again, it's all about numbers.  EVERYONE knows at least one family that has been affected by cancer. In my own family, that's probably how we're going to bite the big one.  Pat's the first person I've ever heard of other than Lou Gehrig and Steven Hawking with ALS.  But, the more we talk about it, the more the word gets out and maybe, just maybe..our grandchildren will end up twerking- or tapping- for an ALS fundraiser.   We can only hope...


http://vimeo.com/77240992



http://www.littlepink.org/dancing-with-the-stars-gala/

Square Pegs

The neighborhood where I walk in the mornings has very old pin oaks lined up between the sidewalk and the street.  Their growth area is about two and half feet across, which leads to an interesting phenomena.  The massive trees are all rectangular.  It's a good object lesson for young children starting to discover nature and then trying to capture it on paper.  They assume trees are round, but, if you show them the trees of Davis street, they will see another sort.  You can't quite fit that round tree into that rectangular plot of ground.

Amyotrophic Lateral Sclerosis is like that.  It just doesn't quite fit into any clear category. And, like those trees it seems to morph into something else, and unfamiliar.  In fact, when our daughter and I attended the ALS conference in Durham last year, the keynote speaker, Dr. Richard Bedlack of the Duke ALS clinic (and Pat's doctor) spoke to that.  He said the more they learn about ALS, the less they know.  They're not even sure if it is a true motor neuron disease.

No one even knows how many people have ALS.  That's why it is so important for those who have managed to be diagnosed with it get on the ALS registry.  In numbers, there is power.

http://www.alsa.org/als-care/als-registry/

ALS was first diagnosed by a French Dr. Charcot and until our favorite baseball player told us he was the luckiest man in the world, it was known as "Charcot's Disease."

Here's the link to the Wikipedia page if you're interested.

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

My point  here now is that AIDS/HIV was unknown until really the 1980s and now it is in many cases considered a chronic disease due to medical advances. That has only been 30 years... The sheer numbers or lack of them often determine whether or not a disease will be tackled by the major pharmaceutical companies.  We've known about ALS for over 150 years.