EHLERS-DANLOS SYNDROME - THE CAUSE OF A HUNDRED MYSTERIES - Updated July, 2024)

Silver S. Parnell

2020

Age 66

NO ONE HAS X-RAY VISION

This is one of those posts that I write, not for myself, but for the thousands of people I represent. I hope to encourage people not to judge the sufferings of others by simply looking at the person. No one has x-ray vision. No one can miraculously feel the pain that is being endured by any other person, especially in a world in which people are punished for expressing pain and suffering, and many of us put on a brave face and a smile, just to keep from being criticized harshly.

Just the other day, I  told a neighbor of a difficulty I was having, in response to her question about how I was doing. Instead of being sympathetic and understanding, she got on her soap box and started lecturing me about how I should not feel this pain, how I should pretend I have no suffering, and how I should not tell anyone the truth.

This is so tedious.

BUT PEOPLE WILL JUDGE

There is much advice from judgmental folk that advocates for putting on a sunny face, but the majority of the Biblical injunctions when dealing with suffering say that we are to be sympathetic, to be loving, to be like Jesus. Jesus said to serve one another. He said to treat one another as we would wish to be treated. The Old Testament advised us to rejoice with those who rejoice and mourn with those that mourn.

No one wants to be lectured when they are in pain. No one wants or needs advice when we are depressed or hurting, but we live in a judgmental, selfish world. It is SO much easier to criticize the pain of other people than it is to do anything to help alleviate it. 

OLDER THAN I LOOK

I write about my personal experiences so that you all my extrapolate my experiences to include those of millions of American sufferers of a mostly hidden, inherited disease.

My whole adult life, people have been telling me that I look very young for my age. The other day, my bathing assistant reacted with great surprise when I told her my age. Many people would be thrilled with this state of affairs, but looking young for one's age CAN be the sign of a little-known syndrome called Ehlers-Danlos Syndrome (named after the researchers who pinned this down. I wish scientists wouldn't do this. It just makes it difficult on all those of us who have to wrap our mouths around the name. Why didn't they call this super bendy disease or circus girl syndrome.)

IDLE CURIOSITY OR IDLE JUDGMENT?

Many people have expressed curiosity about my disability status. I think part of the curiosity (which, in some people, is actually judgmental suspicion in nicer clothes) is that I just don't LOOK like I am disabled. I look great, apart from being fluffier than what is fashionable in this era, but you can't see pain, you can't see fatigue, you can't see the mutated genes or the multiple body parts that are composed of collagen, which is malfunctioning, due to the mutations.

LOTS OF BROKEN BONES

When I was about 9, I was standing in a field, watching some other kids play baseball. I had been standing too long when I started to feel a sudden increase of weakness in my knees and ankles. This wasn't new to me. I'd been dealing with persistent fatigue and loose joints my whole life. Usually, I would sit down at this point, but there was nowhere to go.

Mom, I need to sit down," I said to my mother, tugging on her shirtsleeve. A diffident woman who never liked me much, she just looked at me and made a face. My ankles gave way and I fell to the ground. I broke my elbow that time. In the next few years, I would go on to break the metatarsal bones in my left foot 5 times, wearing a cast on my foot each time. That foot is a different size and width from my other foot today, and because it is longer than the right foot, I have a hammer toe that happened overnight, it seems to me.

I was 13 before I had enough control over my muscles to know how to avoid the fatigue and falling that the bendy tendons, ligaments, and the rest of the connective tissue structures would cause. We were a long time away from learning about this rare condition, and I didn't really put conscious effort into getting control of my body. It is just one of those things that you DO when you inhabit human form. When you're a kid, you learn to ride that thing.

NOT DESTINED FOR THE CATWALK

I am not sure why I ended up being one of the sufferers of EDS and related genetic disorders. I just remember eating the same or less than my sister. She was skinny. I was tubby. It was weird. Losing weight has always been particularly challenging, as I have to practically starve myself to pare down, and the weight comes right back on my frame, with seemingly little effort.

Because of the loose joints, due to overly stretchy and "double" joints, I was never able to wear heels. I was overjoyed when Birkenstocks became popular. They are very expensive, however, and many of the styles do not fit me because of my wide forefoot.

Because of the foot issues, the style of clothing I could wear was dictated by the Birkenstock shoes. I had to be REAL creative about it. Sometimes I could find men's boots that came in wide enough sizes to fit me, so for a long time, I wore pants and cowboy boots or jodhpurs. This suited me fine when I was riding 4 hours a day in boarding school. But I can also remember hand cutting and sewing "maxi dresses" to the floor, made from Indian cotton fabric, printed in paisleys.

The entire trajectory of my life was determined by my wonky feet and my hypermobility spectrum disorder. I couldn't have changed much about it. Thank goodness I had some modesty and preferred to dress with some actual clothes, rather than the sky-high heels and short dresses that became popular at the waning of the hippie era.

SHAKE YOUR TAIL FEATHERS

I began working when I was 11, in 1965, but in my 30's, most of you will remember that I was a religious, where I was a nun, searching for peace, in a Hindu convent (which is where I read about Jesus and became converted to Him!) While cooking one day, I fell right on my tailbone and cracked it but good, smack dab on the hard Mexican tiles. With the already existing scoliosis at the hip, previously broken tailbone, and chronic back trauma, I was in terrible shape. In fact, I had to be scooted around in a wheelchair which, evidently, the other nuns really resented because the head of the convent went to the Swami in charge and told him that I was "faking it," in her words. She knew nothing, of course, and hadn't so much as questioned me or the doctors, nor had she seen the X-rays that clearly showed the multiple issues. I suppose she thought I looked just fine and decided I was "malingering."

In the Catholic faith, gossip is actually a collection of different sins. In these circumstances, it would be considered a "mortal" sin. The Vedantists don't believe in sin, however. Lucky break for those nuns because my name was in their mouths far too often. I used to think I was especially despised by them, and it puzzled me, because I loved them. But, many years later, I now know that women just gossip. Nearly every woman I have ever met has been a gossip - except my friend Jane and a small handful of people who keep their own counsel.

I left that convent, just positive that I was going to find a lovely Catholic community. All I had to do was find a Catholic Church, join the RCIA class, get baptized, and I would be golden.  But people are people everywhere

One of the Ehlers-Danlos websites pointed out this tendency of others to judge harshly those who are afflicted with this syndrome, as looks can be deceiving and some people really DO prefer to judge a book by its cover. Although EDS and related genetic disorders are not curable, I feel wonderful knowing that I am vindicated, after years of people treating me unkindly as a result of this illness.

LOOKING GOOD AND FEELING BAD

The pain of EDS and related genetic disorders, in particular, is far greater than what one would expect upon examination of the x-rays of the osteo-arthritis that shows up rather early in life. That is because only part of the pain is related to the bone-on-bone pain of the arthritis itself. Some of it stems from muscular stress and injury caused by the muscles having to do the work that ligaments and tendons are supposed to be doing. Some of it is caused by the syndrome itself, which is somewhat related to fibromyalgia. There are new studies on the pain aspect of EDS, and more news should be coming up about that aspect fairly soon, I would bet. The related hypermobility spectrum disorder will be affected, as well, I would think.

DEPRESSION

Depression is also one of the symptoms, though it does not appear to be situational, but rather a chemical function arising out of the mutations of the genes that cause this illness.  I read an article recently that was too far above my comprehension. Something about brain chemistry was discussed in relation to the depression. It is not the typical depression, and I think that there may be some specific anti-depressants that would be called for, under these circumstances. FORTUNATELY, I am able to fight the depression with prayer and meditation. It doesn't "fix" it, but I am remarkably cheerful, considering everything I endure.

During the course of my reading about Ehlers-Danlos and related genetic syndromes, I began to learn about the lesser-known presentations in some forms of this disease, I felt like I was making check marks on a looooong list of weird physical symptoms that had hounded me my entire life, starting in early childhood.

DENTAL MALFORMATIONS

A high palate and "crowded teeth" are another common feature of those with EDS, and I have that as well! When I was a child, they wanted to pull 4 teeth to solve the crowding issue.

SIX VERSIONS OF EDS

My doctor and I are still comparing notes between my symptoms and the research. We have not pinned down WHICH version I have, because testing was not available at the time my hypermobility spectrum disorder was diagnosed, but it appears obvious that, of the 6 different types of EDS, I seem to have the most common form of it, the hypermobility type, which is being called hypermobility spectrum disorder at this time. I could also have another version that involves the heart, but funding for the genetic testing was not available when I went to see the specialist for my EDS.  Hypermobility spectrum disorder is "less severe" which probably accounts for the long time in which it has taken for me to be diagnosed. I've always known there was something, in particular, that was wrong with me....something that would explain the physical problems that have caused me such pain and inconvenience my whole life, but I don't think that the doctors have been terribly interested in diagnosing. These days, it seems that medicine has to be fixated on dealing with the symptoms, since insurance companies pressure doctors to handle many more patients than is probably good for us.

Frankly, my diagnosis was fueled entirely by my curiosity and the fact that I am an experienced researcher. I was motivated and just happened to hit upon the right websites. Once my doctor was alerted to my symptoms dating back to childhood, however, he jumped right on board. We are all happy to have an explanation of my complaints.

YOGA MASTER

My experience of EDS was initially "tipped off" by extreme double-jointedness in my whole body. Even though I am in my 60's, I am still really bendy! I can bend over and touch my palms to the floor without bending my knees. Makes for a great showing in a yoga class, but can lead to lots of sprains, strains, falls and breaks, which is what I had my entire life, starting in early childhood.

If you have EDS or hypermobility spectrum disorder, DON'T do yoga!  That's the worst type of exercise you can do. Strength training and aerobics are OK, especially the strength training, because your muscles have to make up for what your tendons can't do.

CLUMSY KID

Children with EDS or hypermobility spectrum disorder are often accused of being "clumsy," and that is because they have not yet developed the motor skills necessary to take over where the tendons and ligaments are loose. Even today, I have to move slowly and do all my physical activities very deliberately, otherwise, I am prone to tripping, falling, dropping things, and breaking many items.

Before I was 5 years old, I remember my parents calling the doctor to come out to the house in the middle of the night because I was having terrible pain in both legs, starting from the hips on down. The doctor diagnosed them as "growing pains," but now I read on various EDS websites that many sufferers of this disease have those awful leg pains as children. The explanation is that the effort needed by the muscles to take over for what the ligaments and tendons are supposed to do causes terrible muscular pains and spasms.

ARTHRITIS AND ALLERGIES

(Asthma and multiple allergies are also common in people with EDS. I remember the doctor coming out to the house for THOSE issues also.)

My tendons, cartilage, ligaments and all the other things that are supposed to hold my joints together are unreliable and let me just fall where I may. I remember once when I was about 10, I was standing in the back yard, just watching other kids playing, when my left ankle gave way and I fell to the ground, breaking my right elbow.

SUPER BENDY DISEASE AND PURPLE VEINS

By the time I was 11, I'd had 5 casts on my left foot, having broken numerous bones from falling as a result of my ankle just giving way. At the same time, I developed severe varicose veins before the age of 13. I have had MANY sprains and strains of my ankles, which is common with EDS and with the hypermobility spectrum disorder.

NARROW HEELS AND FLAT FEET

I've never been able to find shoes with any ease, since I had bunions while still very young, extremely wide feet with narrow heels, and flat feet. The collagen-based structures could not hold my feet together in the way that they do in normal people.

BRUSH YOUR TEETH CAREFULLY

Likewise, nothing could hold my spine in place when I was brushing my teeth too vigorously one morning when I was about 24 years old, and my back went into horrific spasms. I missed at least a week of work and was put on strong muscle relaxers.

I CAN'T STAND THIS JOB

The veins in my leg, in addition to being varicose, also have defective valves that cannot push the blood back up to the heart. Consequently, I've never been able to hold a job that involved any standing. In my early 20's, I got a job at Nordstrom's in a mall in Los Angeles. I was excited about getting a 40% discount off any clothes I would buy, but I only lasted 4 days. My job should not have been physically taxing for a young, thin, and "apparently" healthy woman, but it caused me extreme pain in my legs and hips and, by the end of those 4 days, I became bedridden and stayed there for more than a week!

JUST LIKE MY DAD

One of my legs is longer than the other, not by much, but this was confirmed by more than one chiropractor. My father had the same problem. This brings up the fact that this disease is inherited from one's parent or parents.

BUILT LIKE A SPIDER

Purchasing clothing has always been particularly difficult, especially when trying to buy pants because my extremities are too long for my torso. This is quite common. Usually, the fingers are also very long, but I did not inherit that aspect. I am really tired of my arms popping out of the sleeves of all my shirts and my pants looking like I am going to a flood. In the early 1970's, you used to be able to buy all sorts of slacks and blue jeans that were not hemmed because some women were wearing sky-high platform shoes, I suppose.

Due to a very short torso, not only are the pant legs too short, but the "waist" of all pants rides up to my arm pits...just one of the several reasons that I prefer to wear dresses, rather than pants. "Maxi dresses" are never long enough, though. If they fit in the bodice, they're at least 4 inches too short in the length. This is really inconvenient because I am keen to hide all those ugly varicose and spider veins.

I DON'T SEE WHAT THE PROBLEM IS

When I was 10 years old, I was reading my mother's library of books. My parents never bothered to buy us children's books. I was reading Shakespeare's complete works and Somerset Maugham and O'Henry, but at school I was getting D's. It was decided that my vision was the problem, so my mother took me to the optometrist who asked me, "read the top letter on the eye chart."

I said, "What eye chart?"

It turns out that, due to the fact that the human eye is made almost entirely of collagen, people with EDS are often extremely nearsighted, with multiple astigmatisms, floaters and cataracts. Operating on the cataracts may not be recommended, however, due to poor wound healing. Also, I have macular degeneration, from which I have already become blind in one eye. Without glasses, I am legally blind and have been since a child.

FOUR EYES ARE NOT ENOUGH

I must wear glasses constantly, changing from one version to another, to accommodate different vision issues, depending on whether I am reading, writing, watching television, going outside in the sun. It is extremely important to protect my eyes from all glare and sunshine so I never have to make a decision about whether or not to have surgery on my eyes.

My eyeglasses HAVE to have adjustable nose bridges because, like many EDS sufferers, I have an extremely narrow bridge. For some, their entire nose is quite skinny. I can't take advantage of the low-cost eyeglasses that are advertised on television all the time, as they're all plastic, and even the little eyeglass patches with adhesive on them won't keep the plastic glasses from sliding down to the tip of my nose.

WAKING UP DURING SURGERY

Local anesthesia often doesn't work on people with EDS, something that doesn't surprise me at all, but which surprised the last dentist I saw, many years ago. By the time he finished shooting me with novacaine, the first shot had already worn off. After that experience, I had to get all my work done with a dental surgeon who would put me out.

Last year, I had surgery on one of my fingers. There was a growth that turned out to be benign. The anesthesiologist refused to believe that local anesthesia does not work for me, and dismissed my constant complaints with a paternal, condescending manner. I ended up waking up twice during surgery! The anesthesiologist's resident, not expecting me to wake and see what he was doing, was reading his email on his telephone! I told him, "Hey! I'm awake! Put me back to sleep!"  He did so, without a glance in my direction or an apology.

While the written post-surgery directions told me that I wouldn't have use of my arm until many hours after surgery, my use and function on that arm was completely normal when I woke from surgery (for the last time.) At the time of this surgery, I was unaware of EDS. My negative experiences with this surgery could have been alleviated, had I known.

FACE CREAM NOT NECESSARY

There are some dermatological signs in EDS, and I have very slight presentations in this regard. Soft, velvety skin is one sign. Super stretchy skin is another, which I did not not seem to have when I was younger, but as I edit this blog in 2024, the super-stretchy skin has appeared, especially now that I have lost at least 40 pounds since writing this post.) An odd type of scar formation is present in many, and I have a bit of this, having somewhat delicate skin. I STILL have a scar from a slight injury on my tricycle when I was 5 years old. These scars tend to widen and whiten. They're called cigarette paper scars.

Scoliosis is common in EDS. I have that as well as sciatic issues, which is equally common.

FAINTING SPELLS

A tendency to faint is another symptom, as is fatigue, especially when one adopts a position for too long of a time. Like sharks, we must keep moving.

For the last month, I have been suffering from incessant vertigo, dizziness, a feeling of faintness, fatigue and sleepiness. This is why the nurses have been coming to care for me, as well as an attendant, who helps me bathe. Some day soon, I hope to have a housekeeper who may cook, clean and take me on errands. AFFORDING it may be an issue, though I am pleading for assistance through Medicare. We shall see what they say. (UPDATE: 2024 - I was approved for a Medicaid waiver for the aged and disabled. So far, they have provided me with an electric wheelchair and a part-time attendant.)

A scooter is also a piece of equipment that I will be needing immediately, as is a large bendable bed for the bendy hermit. Though Medicare MAY pay for portions of these items, I will need to pay portions of it. (UPDATE, 2024: I am now in an electric wheelchair any time I have to walk more than a few feet.)

MOVE TO ANOTHER LOCATION IS URGENTLY NECESSARY

I also need to move to a hermitage that addresses my physical and spiritual needs, ESPECIALLY since my current Landlord is hostile toward the disabled and has given me a terrible time with regard to reasonable accommodations that I need in order to function. (UPDATE, 2024: Managers keep telling me that "it isn't fair" for me to have anything that other residents do not have, completely ignoring fair housing regulations. At this time they are removing my parking from in front of my garage to give it to able-bodied construction workers for their convenient parking.)

Anyone able to help financially, please click on the DONATION button on the top, right-hand side of this blog.

HOME SWEET HOME

All others, I beg for your prayers. Please ask for a small house with its own fenced yard for the service dog, very close to the church which our Lord wishes me to attend; a car with a lift meant for the transport of my electric wheelchair; new eyeglasses; and dental work.

The three sets of eyeglasses that I need will cost half a month's income. Obviously, this is beyond my capacity.

There is no cure for Ehlers-Danlos Syndrome or the related syndromes, but pain and other issues may be addressed. I have faith in your prayers.

Anyone wishing to gather more information about Ehlers-Danlos, please refer to THE EHLERS-DANLOS SOCIETY

God bless us all.

Silver Rose

(c) Copyright 2017

All rights reserved.

THE HERMIT'S DIET

This morning's breakfast: Small organic

apple, 1 piece organic whole wheat seeded

bread, 1 piece cheddar cheese

My doctor wants me on an organic Mediterranean diet, due to multiple illnesses that would benefit and because I am allergic to a wide range of chemicals, pesticides and additives commonly found in the American diet these days.

When I told a friend that I was going on a "fishatarian" diet, meaning an organic vegetarian diet supplemented with fish (when I can get it), she nearly shrieked when she said, "That's so EXPENSIVE!"

The expense of organic food depends upon the degree of refined and/or premade food one eats. If one relies upon canned soups, frozen dinners, boxed dinners, etc., then the expense really IS huge, but, if you eat like a monk and eat very low on the food chain, with measured portions of protein, fruits, vegetables, dairy products, nuts and seeds, you can eat an entirely organic diet that is LESS expensive than the customary American diet.

Take a look at my breakfast, pictured above. It cost less than $2 and was delicious! The apple and bread were organic, but the cheese was not.

Cheese is a manufactured item, and is thus, by nature, an expensive item even when not produced in an organic fashion. I will not eat the fake "cheese" - the so-called "American cheese" that was the staple of many lunches of our childhoods, however. We all remember the gelatinous thin slabs of congealed fat and artificial coloring called American cheese.

Neither do I eat non-fat cheese. There is no such thing as a cow that gives non-fat milk. Nature produces food that has a perfect balance of nutrients, fats and proteins. If we disturb that brilliant balance, the manufactured item that results is not food, per se. It resembles food. It won't kill you if you consume it. Whatever calories are present may be absorbed and used by the body, but at what cost? Just because one can consume an item without actually dying from it does not qualify it as food. Think about a penny, for instance. Unless it gets stuck somewhere in your system, it passes right through. It's not food, though.

As for me, I do not eat "non-fat" concoctions, otherwise I become terribly ill. I might as well have taken poison. I spend a lot of time in the bathroom for 24 to 48 hours. Non-fat dairy products contain a much higher percentage of lactose than natural milk, and if one has any sensitivity to lactose at all, non-fat milk will send your guts into overdrive. I do not, however, have any reaction to hard cheeses or cultured products like yogurt. My gastrointerologist told me that this is quite common.

So, going back to my original point, the less a food is fiddled with, the less expensive it is and the better it is for one's health.

I find it interesting that the way I eat is very close to the traditional monastic diet that one could find in many convents and monasteries prior to the industrial revolution and the invention of these frankenfoods to which we have become so accustomed.

Simple, wholesome and natural are the requirements, while I also am watching my serving sizes. Consequently, I have lost more than 40 pounds since bearing down on the diet.

I do not cook very much any more. If you were to look into my refrigerator, you would find very few prepared sauces and dressings. I make my own, when necessary, with the exception of mustard and mayonnaise. The onset of serious illnesses and my inability to stand for long periods of time have contributed to my move away from cooked food and towards salads and sandwiches. Once again, my disabilities have proven to be a blessing in disguise.

(When I go to a restaurant to eat, all bets are off, so to say, and I will eat whatever appeals to me at the moment. A restaurant meal is so rare, it is usually an occasion of celebration and a natural reason to let go of the monastic diet.)

Fasting is a well-known and recommended spiritual practice in many religious traditions. Simplicity and restraint with regard to food, in general, is common to many religious traditions. One of the nuns in the Hindu convent used to become enraged when I got too creative with the meals and would leave me nasty notes on the prep counter. She was right, of course, but her method of communication left something to be desired.

I have often thought about writing a book about convent cooking, but if I wait long enough, it will be unnecessary, since my cooking is becoming more and more elementary over time.

If any of my sisters in hermit life would like some ideas about recipes for the simple life, outlined above, please contact me and I will blog about it.

God bless us all!

Silver Rose Parnell
Copyright (c) 2016

REJOICING IN THE WILL OF THE LORD

After spending more than two years trying to find an appropriate hermitage that was both safe and close to doctors, shopping and my Catholic community, I have finally given up and resolved to stay where I am, make it as safe as possible, and return to writing books, with the intention of evangelizing, educating AND making some extra money to fund the PURCHASE of a small hermitage that can be outfitted to accommodate my numerous physical disabilities as well as my eventual blindness.

If the Lord had wanted me to move into another rental, we would have found something. I realized that it was God's will that I remain where I am for the time being. Many times, the will of the Lord is revealed to me by some FAILURE. Failure can serve as a beautiful message of the Lord's intentions, since nothing happens without his will or his permission.

Instead of feeling defeated by failure, I feel uplifted and joyful. The Lord has revealed at least PART of his will for me, and I feel so happy because I want nothing more fervently than to know and obey His will.

Faced with living in somewhat dangerous circumstances that do not meet my needs with regard to my disabilities, I resolved to just dig in and make the best of things. I will live with whatever I am able to endure, and I will do my best to improve the other conditions by begging for help from my Catholic friends.

The first thing I did was to have internet installed. Comcast had a special two year deal that included phone, television and internet. In order to get my writing "career" revved up again, I need access to good, fast internet. Also, I am an expert genealogist and will be open to taking genealogy research jobs, here and there, which also requires fast internet. The television gives me access to Catholic networks, the history channel, and news; while the home telephone is an added safety feature that I have been needing for some time. The cell phone service will be reduced to an emergency phone to take in the car with me on the rare occasions when I drive, which will radically reduce my usage and the cost for the cell phone.

My doctor wants me on a Mediterranean diet to address my numerous ailments, and I have resolved to follow his instruction more strictly as well as to reduce my portions, both to save money and to improve my health. The cost of the internet, cable and telephone will eat up the remainder of my food budget, so meals must be simple, albeit organic (because of asthma and allergies), and I'll have to beg for donations and/or supplies. Two of my Catholic friends have been subsidizing my diet for some time, but I will need to find some additional help. (Please don't write me and suggest the food bank. I am allergic to most of what they offer and I have had terrible luck with rancid and moldy food from them.)

Mostly, I will eat fresh organic fruits and frozen organic vegetables, brown rice, yogurt, bread and fish. My diet will closely resemble what I ate at the Hindu convent, though perhaps a bit more simple and strictly organic. I have made an Amazon wish list for food and household items that I need in this process of hunkering down and preparing for the next battle. Amazon knows my address and will mail to me directly. Otherwise, you could donate via Paypal (button on the right side of the screen.) Amazon links are at the bottom of this blog, and to the right.

Saint Jane and her husband, Dave, have already bought me a new computer, and it should arrive sometime this month. The one I am currently using is at least 8 years old. It was given to me by a neighbor who moved out of state. The screen is hanging on by a thread and is almost completely disconnected from the keyboard. It's a mess, and the software is ancient, so the time has come for a new one. (Personally, I don't like having to learn more computer programs, but it is a necessary trial.)

How do I know that writing a book is God's intention for me? I have the strong feeling that this is what He wants, but I really won't know until I finish the book and begin trying to SELL it. That is where the rubber hits the road. For myself, personally, I feel that, to the degree that I am able to support myself, I should do so. My abilities are very limited, but I should be able to get a book finished eventually. It is the last leaf on the tree I have been shaking for the last dozen years.

I won't give up my monastic routine, such as it is. Instead, I will write the book between prayer and meditation times. My heart and mind yearn to be united with Christ at all times, and I strive, in my limited ability to "pray always." Of great help is THE PRACTICE OF THE PRESENCE OF GOD by brother Lawrence of old, who said that he was equally present with the Lord amidst the pots and pans in the kitchen as he would be in the choir. He was an ordinary man with ordinary talents and a great inspiration to the rest of us ordinary people who strive to unite ourselves with the Lord.

If the sale of the book fails, then I suppose I will stop trying to do anything but PRAY and beg for my survival....like the mendicants of old.

In the meantime, I ask for your help and your prayers.

God bless us all!

Silver Rose Parnell

AMAZON WISH LISTS TO HELP ME HOBBLE THROUGH THIS PHASE:

RESEARCH AND WRITING NEEDS

WORSHIP NEEDS

FOOD, MEDICINALS AND HOUSEHOLD NEEDS