Tuesday, October 17, 2017

It Shouldn’t Be . . .But It Is

Nothing short of a miracle. After weeks and months dealing with the company we wanted to put an iron railing round the front porch—they still didn’t come out to look at it. And the electrician who wandered all over our house looking at all the work which needed to be done—he never sent a quote. There’s the guy who claims there is not a hole in our roof, but we know there is because of water collected in a tub in the attic and the peeling of the ceiling in one of our bedrooms, well he said he would return with his crew, but so far no sign of him.

There there is this. A couple of months ago this bath-room sink was running slowly and the amateur plumber of the household took out the trap and removed a huge mess of black greasy gunk. But he could tell there was more gunk adhering to the pipe going straight down. We couldn’t figure what it was. There was certainly hair, but I denied washing my hair in the sink—it is just not big enough. The sink was working adequately until a day or so ago when it totally refused to drain. So this morning I phoned the plumber who has worked for us before. We always looked forward to his visits, because he brings along his father, a fine old Italian workman who carefully “supervises” his son’s work, all the while telling the corniest of jokes. But not today: at the age of ninety he has finally decided to retire. I called the son just before ten and he said he would be out either late this afternoon or early tomorrow. Miracle dictu, he turned up a couple of hours later and used his magic machine to clear out our pipe. Again it was hair.

It can’t be. . .  but it was.

Saturday, October 07, 2017

October 7, Again.



Today is Trigeminal Neuralgia Awareness Day and once again I want to join in raising awareness of this condition. Even if you are familiar with the medical aspects of TN, please read this article which was taken from the Living with Facial Pain website. It is long, but it puts a human face on the suffering. The book referred to in the article was written by my own neurosurgeon.

"Caring for someone with Trigeminal Neuralgia

This article is written for the benefit of those people who are caring for a sufferer of TN. It describes the very worst circumstances because it is at those times that your help and understanding are most needed. Fear not, it is by no means all doom and gloom! Thankfully, there should be long periods of remission, new drugs are coming onto the market with fewer side effects, and many TN sufferers obtain complete and long-lasting or permanent relief from surgery. But if your partner or loved one is having a rough time just now, we hope the following may be of help.

It is sometimes very difficult to be sympathetic or understanding when a person has a long-standing illness or pain, particularly - as the case of a TN sufferer - they may look perfectly well and healthy. A vicious wound or a broken or disjointed limb has a visual impact and elicits more sympathy than does a hidden pain, but the suffering can be as bad, if not worse. At least with a severe cut or a broken arm, the sufferer (and the carer) knows that, given time and the right treatment, the injury will heal and life will get back to normal again. TN is an invisible disability and, sadly, the prognosis for TN is not so good. Often the outlook is that it will get worse, not better.

TN is unpredictable. It can sometimes be triggered, for example, by a facial movement, such as smiling or chewing, or by the lightest touch or even a cold wind or a draught. On other occasions, though, the same “trigger” will have no affect at all. It’s therefore easy to believe the sufferer is “putting it on”, making a fuss or deliberately avoiding a situation. This is not the case.

There may be times of complete remission, possibly even for years, but these are likely to lessen with time. TN is a progressive disease that requires surgical intervention or treatment with powerful drugs. The drugs can have unpleasant side effects and often the dosage needs to be increased. The surgical procedures can be a frightening prospect. This adds another spectrum to the illness – that of fear and very often of depression.

It is hard enough coping with someone in pain, but even more difficult if that person is fearful and possibly depressed. You may think the sufferer is becoming “paranoid” that the pain might return. The pain is quite literally unbearable and debilitating – like a jolt of lightening – and can be quite terrifying. As you have probably heard or read, it is described as possibly the world’s worst pain. It can be fleeting and so sudden that it’s almost over before it’s begun, leaving the person momentarily frozen with shock. But the jolts can be “zapzapzap” continuously, which is totally incapacitating. The aftermath of what feels like several thousand volts jazzing through your face or head can leave you weak and petrified to move for fear of triggering another attack. Yes, the sufferer is quite likely to be paranoid that the pain might return. TN does that to you!

The person you care for may have difficulty in talking, eating, smiling and laughing. They may suffer facial twitching and/or involuntary head jerks. Additionally, high doses of medication may make them mentally slow, forgetful and confused. They may be exhausted and depressed. Not good company all round really!

You might find you have to sacrifice activities that you both once enjoyed together. If the TN sufferer is badly affected by movement of the mouth, they may not be able to talk and can often be unwilling to join in a social occasion. (They are even seemingly unresponsive to their nearest and dearest, but not through choice.) If they have difficulty eating and drinking, they will be reluctant to go out for a drink or a meal. If their TN is triggered by cold or wind on the face, they may avoid going outside, and so become reclusive.

This makes life harder for all concerned and it is important that the carer does not also become isolated and uncommunicative. Both of you need the friendship and company of others. Unlike, for example, migraines or MS, TN is a little-known disease and will require explanations. You will need to make sure your wider family and friends are aware of the situation and ensure they are supportive too.

If you are looking after or even just visiting someone who is affected in this way, remember that your care and attention is invaluable. They may not be able to express their gratitude, but it will be immense, you can be sure of that. At times when their pain is severe, try not to engage them in long conversations (you may only get a grunt by way of a response!), but just your presence and kind words will do much to alleviate their distress. Try not to make them feel as if they are a burden (even if they are!). Little acts of kindness and words of encouragement mean so much.

Try to accept the fact that they will have good and bad days, and do your utmost to be there for them on the bad days as well, even if it isn’t much fun! It also helps if you can learn as much as possible about their problems so that you can explain the situation to others, hopefully eliciting their sympathy and help – thereby lightening your own load. Also, the interest you have shown by taking the trouble to broaden your knowledge will be greatly appreciated.

To be in the company of a fellow sufferer is comforting beyond belief, but better still is to be with a loved one who has done everything possible to really understand the problem and is patient and sympathetic.

The more you read up on the subject, the better will be your understanding of what the sufferer is going through and the more you will be able to help and advise them. The best starting point would be the book, Striking Back – The Trigeminal Neuralgia and Face Pain Handbook, written by an American neurosurgeon and a journalist and former sufferer, which is available direct from the TNA-UK at £16.50 including p&p.

The pain may strike when talking, so be aware that conversation may be halting or may cease altogether for a while. If it strikes during mealtimes, eating may be slow or hesitant. If you are in company when this happens, you should be aware that your partner may have “seized up” and it would be helpful if you could take over the conversation until he/she recovers or explain to friends why your nearest and dearest has stopped “mid chew”, so to speak. Eye contact messages between you, or hand gestures, will become more important. You may even spot the flinch or hear the intake of breath. Try to pick up on these signals quickly and take appropriate steps to prevent your partner having to suffer embarrassment or further unnecessary pain in trying to explain why they cannot talk or why they are taking so long over their meals.

The sufferer may find it almost unbearable to wash their face or clean their teeth properly. You might have to put up with someone who has bad breath and whose personal hygiene leaves something to be desired. It isn’t their fault and this situation will be temporary!

In the case of couples, the disease may also have an affect on the intimate side of the relationship since the sufferer will not want to kiss or be kissed, have their face or head stroked or, sometimes, risk a hug. This loss of intimacy may appear to be a form of rejection. Please don’t misconstrue it as such. The sufferer may yearn for physical or intimate contact but be frightened that it may trigger a jolt of intense pain. It can almost seem like a form of aversion therapy to have an electric shock when partaking of a pleasurable pastime!

Because the anti-epileptic drugs are designed to suppress electrical impulses firing in the brain, they also have the same deadening effect on other brain functions, such as memory and thought processes. If the TN sufferer is on high doses of medication, their memory could be badly affected. They may have trouble with word recall, they may repeat themselves, forget important dates or arrangements, appear confused or muddled. To some this is a great source of embarrassment and it can make them very self-conscious, as well as being unimaginably frustrating! You may need to be their memory, their prompt and their organiser. Try not to take over the organisation of their lives, but if you are able to “catch them when they fall” and not get irritated at their forgetfulness or temporary stupidity, it would be a great help. The medication may also make them extremely tired and sleepy. The more sleep they are able to get, the better, so try to be understanding about this, too. They may be struggling to achieve simple daily needs while experiencing overwhelming fatigue.

In an emergency, it is possible to get immediate (but, of course, temporary) relief from a “nerve block”. It is always a good idea to write or type out notes about the patient’s TN medical history to take along to a hospital or pain clinic because this is invaluable and even the best carer cannot be expected to remember it all.

The sufferer may have visited several practitioners over many years, been disbelieved and patronised, they may have tried dozens of treatments and therapies, been nauseated and debilitated by the medication, they may have lost their quality of life, suffered desperation and disillusionment.

As a carer, you will need to be protective and supportive. You will need a positive attitude and perseverance. You will need compassion, patience and sensitivity. Doctors, neurologists, neurosurgeons and fellow sufferers are all looking for ways to find a cure."

Tuesday, September 12, 2017

You Can’t Teach an Old Dog New Tricks

I mean, it’s like learning how to fold a fitted sheet. I can't make a fitted sheet look neat even though lately there have been all kinds of helpful videos showing how to do it. It is too late for me to learn. I tend to read a lot of recipes and kitchen hints, as opposed to actually cooking, and although I now know I am supposed to crack a hard boiled egg at the sharp end (or is it the rounded end?) in order to peel it neatly, and that cutting the stem (non-stem?) end of a cucumber gives you bitter slices, I have been peeling eggs and slicing cucumbers with a reasonable amount of success for over sixty years without needing to know such esoterica.

This leads me to my eyes. The two cataract surgeries were clinically a great success. I can now drive or sit and watch television all evening without any glasses, I can now, with the aid of reading glasses, sit all day with a book and see all the words. I replaced the cheap reading glasses with ones that enable me to see the computer screen also, so I should be OK, right? Wrong. No-one just sits and watches TV—I am always reading or checking documents or using my hands at the same time. This means taking the glasses hanging round my neck and constantly putting them on or removing them. Frequently I forget to remove them and gaze fuzzily into the distance and think the surgery has come unglued. No-one reads for any period of time without occasionally looking up at people or staring out the window. Eating is weird: my food is too far to use the readers but too near to be able to use my new eyes. (I have even been known to spill soup on my dangling glasses.) Anyone who has tried this will know what I mean.

It is not just my eyes that misbehave. My arms automatically reach out to the bedside table to grab the glasses without which my brain still tells me I won’t be able to see when I get out of bed. It is like phantom pain from an amputated limb. After sixty odd years of wearing glasses they have become a source of comfort.

I started to explain all this to my surgeon when I went back for a check-up.  He immediately whipped off his glasses and put them on me. Eureka. He wears progressive lenses with plain glass at the top. As soon as my eyes heal he will give me a prescription for new glasses with the same properties and I will joyfully revert to wearing glasses. Basically progressive reading glasses. As he smilingly said, “Very expensive reading glasses."

Sunday, August 27, 2017

Cyclops

The Cyclops by Redon
This is rather an adorable depiction of Polyphemus. (Or, as Veronica loved to say, Totes Adorbs.) The colors pop and he looks like a toy small children would enjoy. (If you want to encourage nightmares, try googling “Cyclops” and see some of the monsters who are lurking on the Internet.)

So why am I writing about about the Cyclops? I feel like one these days. I knew last year that I needed cataracts removed, but since I was already lined up for inter cranial surgery, I didn’t want too many people messing around with my head. When I finally got around to calling for an appointment, I had to wait nearly five months—which either means my eye doctor is fantastically skilled and in demand or there are a lot of people walking around with cataracts. I waited patiently and was most encouraged by the account of a fellow blogger on her surgery and the wonderful results that were achieved.

When I was asked after a thorough examination if I wanted to go ahead with the surgery and if so, when, I replied, “As soon as possible.” I had the cataract removed from my left eye on August 11 and I am scheduled to have the right eye taken care of this Thursday. Like Maggie May I had a new lens implanted which has given me back my distance sight: unlike her I can function with the left lens popped out of my glasses. After the next surgery I will be legally able to drive without glasses, though I am going to have to pick up cheap reading glasses at the drug store. How my vision will be for using the computer I don’t yet know.

I can only concur that the world is brighter and that I am so happy I finally took this step. The one-day check-up, the one-week check-up and soon the three-week check-up are pretty tedious. I will be using steroid eye drops for a while. It is just about impossible for me to get the drops in my eye and I tend to land up with the expensive liquid running down my nose.

So the lens still in my glasses would have needed a new prescription without surgery and my view though the empty side of my glasses is great for distance, lousy for close up. My brain is coping, but I can’t wait for Thursday. Being a Cyclops is not much fun.

Tuesday, August 22, 2017

The Days Dwindle Down . . .

The co-inhabitant of this house complained yesterday that the Solar Eclipse had snuck up on him.  I have forewarned him that the next solar eclipse is April 8, 2024 and to start preparing now. It’s even coming through Detroit. But events do have a habit of sneaking up, don’t they?

The last major visit of the summer is over and I am still working on washing sheets and towels. Andrew and Marcie and their six children arrived from Maryland last Saturday, stopping off to spend Friday night with Liz and Jeff in Canton. That gave them eleven kids to find sleeping accommodations for. I didn’t ask. We were short one bed the first night, but the customary arrangements of cousin mix-and-match sleepovers took care of our problem.

Aristotle was discussed.
How much easier it is when the children are older. I didn’t have to decipher breakfast requests or figure out what everyone wanted to do. “When do we get to see our cousins?” was the most uttered question. The first day was Josephine’s eighth birthday, so we celebrated with a large cake and some of the cousins came over to share it. (Sorry, Josephine, I can’t find the photos.) Three of the “local” cousins have jobs, so there was often someone missing, but for the most part everyone was able to join us.

On Sunday we managed to get together at our park. We had four children and their husbands/wives with us and seventeen grandchildren. Fortunately it was beautiful weather, so all the children swam and then played volleyball. When I walked over to watch them, I discovered they were actually burying each other in the sand.

Is this legal?
After abusing the volleyball equipment, they went on to abuse the park’s wheelbarrows meant to transport coolers etc. to the tables.
Charlie gives Veronica, Joe and Lydia a ride



















It never takes long when we have guests for patterns to develop. However early I got up Andrew had already taken a drive along the lake and visited Starbucks (just like his older brother did when he was here.) Marcie slipped out in the early hours to run long distances as part of her training for the Marine Corps Marathon in the Fall. The children were all eager to discuss the classes they would take in the Fall and the boys were anxious to get back to their swimming team.

Before long it was time to say goodbye.

So far I have only found four forgotten  items to be packed up and sent off.  Wonderful visitors: I miss them all.

The days of summer are gradually dwindling down. I suspect there will be another monsoon or heat wave—this is Michigan after all. But I am thinking about buying some new chrysanthemum plants and some new sweaters. Soup sounded pretty attractive today in the cool of the morning. One grandson is already back at college and out practicing on the soccer field, the other is leaving at the end of the week.

All in all, summer is coming to an end. But I suspect it is not the dwindling summer days I miss, but the days of visiting children and grandchildren, the days of heavily laden cars backing out of the driveway. Of being together.

Wednesday, August 09, 2017

Vita Would Not Approve

It was twelve years ago that I got the misguided notion that my garden might somehow, some day resemble Sissinghurst. Too bad, I thought I had included a photograph in that post, but apparently I did not, proving that even I realized that a few dabs of white do not constitute a white garden.

In that post I mentioned my David phlox and the faithful nicotiana. The nicotiana must have died out and I had forgotten I even had it, but sometime ago I planted a bunch of shasta daisies which have really taken off.

Too much white—too much yellow, for that matter, and the purple clematis which once covered the arbor is going to meet its maker. I just don’t have the stamina to work in the garden the way I used to. The trouble is, as long as we are here I have to do something with the flower beds. I can’t just leave them.

Today I noticed that my grocery store, my occasional source for inexpensive plants, has pots and pots of chrysanthemums and asters ready to add a touch of autumn color. Not a white one in sight. Then I start  thinking of all the work involved in moving around my current plantings and re-organising the neglected garden.

I think I will buy a large book of photos of Sissinghurst instead.

Monday, August 07, 2017

Two Down, One to Go

Another jumbled post, because I have been too busy to write and because so much has been going on. So here are a few notes, because I am sure before long I will be wondering what it was we got up to this summer.

The two and the one I refer to in the title of this blog are sets of visitors. Summer was always the prime season for guests. Not so much any more as some  family members are not as handicapped by the school calendar which made the summer months the best time to take a trip. Even so, life is complicated: I was lamenting to my son how sad I was that my sister-in-law (part of our last group of guests) had not seen Liz and her family while she was here and she had seen little of some of Kate’s children, because of their summer jobs. He replied, “Life is not full of problems. It is just full of life.”

I love guests and count myself lucky to have known so many wonderful role models in hospitality. One of my great satisfactions in life is that my children are kind, generous and welcoming souls. (Pretty means cooks, too, because entertaining always requires a lot of cooking.) And I grieve that I am finding it a little more difficult these days to roll up my sleeves and get to work in the kitchen.

It is hard for me to explain that in England there was little concept, at least when I was growing up, of inviting semi-strangers into your house for a meal. As soon as I arrived in California, I met Dick and Carol Trapp, who became my greatest role models. As I was later to find out, Classics teachers don’t bring home large paychecks, but the Trapps added a place at their table for so many, and eventually for me, as they had done for Ernie before me, and it was at their house that I first met my husband to be. This photo is a memento of Christmas 1964, the second Christmas I spent at their home.

Al and three of his sons were our first guests. Gody was working, as was my oldest grandson, Emmanuel, who earned college money this summer as a lifeguard. These visits tend to be cousin-fests and we do our best to mix and match the next generation. How times have changed: a couple of Kate’s boys also stayed one night and I woke up one morning to find Charlie, a pot of coffee already made, emptying my dishwasher!

Ernie’s sister-in-law came next, driving in from Chicago with her daughter Megan and two granddaughters. Megan and my daughter Lucy have been partners in crime from their childhood, through college and living in France. Lately Megan’s life has taken her to at least seven far off US cities, so this was a grand reunion. The idea was that their children should join the spirit of cousin-fest, but it appears that Lucy’s Joe and Megan’s Cecilia are both at the stage where “mine” is the uncontrollable mantra. Fights ensued.

 Don’t they look sweet and harmless?

We have suffered through yet another Michigan monsoon, we celebrated several birthdays, all of which I failed to commemorate, we have mourned the passing of friends and I finally went to my long awaited appointment with my ophthalmologist.  The upshot is that I am having two cataracts removed, the first this Friday when Andrew and his family arrive. Lousy timing, but as Andrew himself said, “(Life) is just full of life”.

I also turned my attention to the garden, managing to remove not only weeds and vines, but handfuls of phlox, shasta daisies and black-eyed susans, which have proliferated in alarming numbers and needed thinning with a firm hand,

Finally this guy celebrated his birthday yesterday
and Thursday will mark our fifty-first wedding anniversary.

That will do it for now. Watch this space.