It’s snowing inside!

One of the many frustrations of being stuck in bed for too many years due to complications of lyme disease is my inability (and lack of energy) to participate in the world at large. It is far too easy to get down and to see everything as half empty. After a while living life as if it were a tragedy, it isn’t very much fun and even becomes somewhat self-fulfilling. As I have often said to my family, “don’t see walls, make windows.” For anyone, everything in life can seem like it is too much to bear and to overcome, but there is always a way to see it through. Even if my situation doesn’t change, my attitude toward life and everyday challenges can be positive, and a blessing to others. As God sustains me each day in my own situation, I can bring people and experiences to me!

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I love winter! Of course, many Torontonians would say that I wouldn’t love it so much if I had to bundle up, shovel snow, and drive in it….. But no, I used to love that too! I can see the snow coming down and sitting on the spruce outside my second story windows, but I can’t see it on the ground. What I can do is see snowflakes inside my room! My daughter Catherine made some beautiful six-pointed snowflakes, with some assistance from Erin and Kristine. Apparently this is not the usual straightforward way of making snowflakes. The results were beautiful, and my room now has a permanent winter view, even when the blinds are closed.

I can’t get out to see family and friends, but as my energy allows, I can welcome people in to see me. The encouragement and help we have received from others has been overwhelming.

I can’t go out to see a show or to the theatre, but I can enjoy the classic movies of the last century on the Turner Classic Movies channel.

I can’t easily keep in touch with family, friends and the world, but I can use my laptop for email, web connections, RSS news feeds, etc…

I can’t hold and read physical books, but I can download and read ebooks on my old Palm. My favourite genres are Science Fiction and Global Sustainability. I am currently reading the sci fi novel “Echo” by Jack McDevitt and have been reading “Hot, Flat, and Crowded” by Thomas L. Friedman, and “The End of Poverty” by Jeffrey D. Sachs.

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I can’t be an educator any more, but I can still help educate. I help my family with budgets, math, school work, decisions, goals, values, priorities, computer issues, and so on. And I can still help friends with technical and computer questions. I try to help others avoid getting lyme disease, and also connect with those who are now struggling with it and can’t get any help and don’t know what to do.

There is always a window, even in the darkest times. There are many things which I cannot do, but there are many things for which I can advocate, and concerns which can be expressed. I am concerned about the spread of lyme disease, especially as it is driven by climate changes which are only now beginning to seriously impact our lives here on Earth. I am concerned about the many thousands who get lyme disease every year and get to watch their own freefall, oblivious as to what is happening. I am concerned about ideological battles which distract us from the quickly encroaching issues of poverty, homelessness, drought, economic disparity, sustainable energy development and deployment, etc… I am concerned about the priorities which nations and peoples often hold, whereby personal convenience, wealth and power take ever increasing precedence over community and global citizenship and the future sustainability of our world and its species. Each of these issues has a solution. My own issues have solutions as well. Sometimes the solutions involve how best to manage where we find ourselves, but a positive and prayerful attitude combined with effort can make all the difference. Continue to think of me, for I am seeing some slow and encouraging improvements 🙂

Farewell to Alice

Alice Embury

Grandma Embury

Nannie

September 23, 1908 – December 23, 2010

throughout her long life of 102 years she has also been known as

daughter

sister

wife

mother

grandmother

great grandmother

great great grandmother

friend

….. to me she was my grandmother and my friend

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her talents and passions were many

everything she put her mind to she mastered…..

loving matriarch of her extended family

listening ear

positive spirit

inspiring character

godly woman

cribbage master extraordinaire

knitting for family, friends, strangers, charity

transforming yarn into baby clothes, blankets, afghans, scarves, mittens, hats, sweaters

prolific letter writer

enthusiastic reader

crosswords and puzzles

quick walking stride, no trek too long

rest in peace my dear Nannie, our memories of you live on

Merry Christmas from the Leggett Family

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from the Leggetts!

Dear friends and family,

We wish each of you joy during this Christmas season and hope that there are many blessings you can recall as you look back on this past year. For us the year has had some important events and many quieter moments.

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David remains in bed, though making some small steps forward. He now has a physician and alternative health practitioner who will be able to try to treat him for his illnesses at home. This is a huge step forward and certainly an answer to many people’s prayers. One highlight for David this year was when we managed to find a window of opportunity to bring his grandmother, who is over 100, to visit for a couple of days. David hadn’t been able to see her in 4 years. She had been saving up her energy and surprised us all with how plucky she was when she was here. 201012230307.jpg

Erin made the transition from elementary school to high school this year. She had an opportunity to go to Ottawa with her middle school band in the spring for a national band competition. Now she has followed her sister to high school and continues to play flute in the junior band. She is also enjoying dance and drama there, along with the regular subjects. In her spare time she spends a lot of time with her pet mice. Erin loves animals.

Catherine spent half of the summer as a camp counselor. She enjoys working with young children. She is in grade 12 this year but will be staying in high school for another year as she has been heavily involved in arts courses – dance and band. She has the privilege of being involved in the school dance company this year as well, which involves lots of extra time, but also many opportunities.

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Kristine’s parents had their 50th wedding anniversary in June and it was a treat to be able to get there and help them celebrate. She continues to enjoy her job as a Nursing Practice Leader at the nearby hospital. There are always new challenges and the privilege of helping to stir passion for patient centred care in staff.

All the best in the new year.

With love from David, Kristine, Catherine & Erin

Reunion with my grandmother: An amazing centenarian

grandmother A few weeks ago we had the privilege of seeing “Nannie” (my grandmother). I hadn’t seen her in about 4 years, due to the scourge of lyme disease and various tick-borne co-infections. She doesn’t travel much – I guess she is slowing down a little with age, now that she is on the cusp of 102 years old. Her persistence in wanting to see me paid off, as Kristine was able to travel and pick her up this summer. Thanks to Alice and family for providing a home base for Nannie, and for getting her back home.

Nannie’s favourite game is cribbage…. she is truly the “champ,” having likely played close to 100,000 games over her lifetime and even garnering a very rare “29” hand a number of decades ago. In fact, she and my mother taught me, and I have always loved the game. Nannie and I played two games over the two afternoons that she was visiting us…. The first result was no surprise – talk about dismal hands!! And I was rather rusty. On the second day, the good cards were turning up in my hand, and perhaps my head was a bit clearer. I won! So, in the end we ended our 2-day “tournament” in a peace-rendering draw! What fun!

Over the 4 hours that we spent together, we reminisced about when I was young, when she stayed with us when Catherine and Erin were newborns, and when they were toddlers and bouncing off the walls. We talked about family history, going back many generations in Canada, England, Ireland, Wales, and Germany.

The visit ended too soon. We have precious memories, pictures and video clips. And a commitment on my part to write more (as I am able). Certainly seeing her was a belated 46th birthday present for me!

About “summer” and struggle and progress

Perhaps we have skipped spring this year. Erin (and her constant rodent companions) have been outside a lot, walking (yes, walking!) and on the trampoline in the backyard. Catherine and Kristine have also been basking in the beautiful weather. Although past experience tells me that there may still be snow flurries in April, it is very very hard to imagine that right now. At this rate, the Air Conditioning may need to come on in a matter of weeks! Since my view is to the west through the master bedroom windows, I can enjoy the afternoon sunshine, sunsets and the songbirds that have recently set up camp in our front spruce tree.

Putting the difficult winter behind us is a very welcome prospect. Kristine got a severe campylobacter infection in January. It would be two months before the illness, the drug reaction and the last of the complications had finally receded. Not a fun time, especially for her! Our church and close friends responded with love and grace to help her look after shopping, and other family and household needs. She missed a lot of work over the course of the worst two or three weeks, and really struggled to continue working for quite some time after.

Erin has been training her mice (I call them Ethel and Melinda) to not pee all over her. With some success, unless she or Catherine forgets to put them back in their cage when they start crossing their legs. Erin has also been busy with arts auditions for the high school she has been accepted at for the fall – for placement in music, drama and dance in grade 9.

Catherine has been fighting every possible bug over the last 3 months, missing many school days as a result. Right now, she has a real doozy of a cold, and is quite hoarse. We hope that the warmer weather will stamp out the spread of these illnesses.

I have had a hard time writing since my last disheartened post on February 3rd. Three major things required my attention… Taxes are always so much fun. Also, the main television that Kristine and the girls rely on downstairs stopped working. Fortunately, the 18 year-old TV could be repaired within a few days or so, although it took quite a group effort from our Pastor and Family and Youth Director to help move the old CRT behemoth. And finally, the main computer that Kristine and the girls rely on daily (sometimes minute by minute!) finally and suddenly went kaput! Doing without a computer over the March Break was especially hard on Catherine and Erin – the current crop of teenagers can’t live without being plugged in frequently. They used my laptop when necessary, but it wasn’t set up to do much of what was needed. It took quite a while to set up a new iMac, as it took a lot of effort from myself and Kristine to set up and restore necessary data from backups. Quite a lot of patience was required from our two girls who were ‘chomping at the bit.’ These efforts really took their toll on my energy level, even though I could only help a little bit at a time. In the end, with taxes done, our iMac all done (with no data loss, given the fortunate timing of the last backup only a day before the ‘last breath’), and the TV still limping along, we are ahead (for now). Of course, the wallet took quite a hit – I think that we need to have a significant component of our budget called “catastropic replacement.” Is it my imagination, or has the advent of newer technologies involving more electronics, computer chips, etc… over the last number of decades simply ushered in a greater incidence of failure and replacement?? Perhaps this is the price that we pay for technology and convenience….

Sometimes being so ill and fully bedbound can really get to me, and make it very difficult to write, and even to be entirely pleasant! The heavy burden of lyme neurotoxins add to the discomfort, inflammation, pain, extreme fatigue, irritability, brain fog, etc.. that already plagues me on a daily basis. I enjoy hearing from friends, but recognize that for many, family and professional priorities are all-encompassing, and that discomfort re. my condition is a wall that cannot easily be breached.

This Easter weekend we had my parents and sisters here to stay with us. Although I was very tired by the time they left earlier today, I wouldn’t have missed it for the world. Family is an important touchstone as I face the complications and co-infections of lyme disease. I managed to visit briefly with each family member each day that they were here. Quite an accomplishment given previous “crashes” after such expenditures of energy and such focus and stimulation. Come to think of it, I have even been able to tolerate a few visitors at once with greater ease than would have been the case a year or two ago. Friends and former colleagues Marty and Kathy from our neighbourhood, and Marg and Al from our church visited me over the last few weeks. Means a lot to me. Thank you!!

It is not always easy being positive. After years of turning the medical world upside down and dealing with doctor after doctor, and eventually ending up with treatment complications and failures, I was left to my own devices. I guess it would be easy to feel sorry for myself (sometimes I do), and blame the medical system and intransigence of North American doctors in charge of lyme disease policies (I do), and even blame God for letting me languish in bed without much medical hope (I have sometimes been down that road, too). But I am not a quitter. Kristine and I and our naturopathic doctors have left few stones unturned in seeking out alternative protocols that have been successful, and have been slowly implementing some of them, at least as far as my very very sensitive body can tolerate. And there is progress. Although I am still confined to a mostly prone position in bed, I have a bit more physical and mental stamina and my brain can process more input before it begins to “fizzle.” I spend part of each day watching good movies and TV series, although this can get rather monotonous after a while. And I do what I can on the laptop, helping others with computer questions, serving (remotely) on a vacancy committee at our church, etc… I also sleep, rest, meditate, even relax when pain and inflammation allow. Throughout my daily ups and downs I gain some measure of peace and even fulfillment by remembering that God has really not abandoned me. Although this wasn’t what I had in mind, I have faith that He will restore me to a measure of health, and that I can trust Him and rely upon Him to direct us and to provide what I need and what my family needs to see this through. I have always been encouraged by the following verse, and especially now it sums up the hope that burns within me,

but they who wait for the LORD shall renew their strength;

they shall mount up with wings like eagles;

they shall run and not be weary;

they shall walk and not faint. (Isaiah 40:31, ESV)

Happy Easter 🙂

Mid-winter news (and the mice…)

erinspet.jpg As you can probably guess, we no longer have our cat. She passed away on November 1st after 20 years with us. She was a great mouser. Two mice wouldn’t have survived in our yard, let alone trapped in a cage in our house. Within a month of losing the cat, Erin got it in her head that she wanted two mice (after she suggested another cat, then a dog). Erin had some conditions to fulfill first, before 2 “rodents” would be coming into our house. She had to ensure that a friend would be able to look after them when she was away for part of the summer. And she had to research costs, accessories, etc… To Erin’s credit, she quickly became an expert in mice, cages, bedding, food, and goodness knows what else. She had even named them. There was going to be a white mouse named “Scarlet” and a black mouse named “Linda”. As you can guess, Erin doesn’t believe in leaving things to fate.

On January 23rd, the time had finally come for the mice adoption. The preceding three weeks had consisted of screams and giggles of delight as the critters were anticipated. Having mice around didn’t stop that either. At least initially. I have to laugh now when they pee all over Erin and run around the house in plastic balls. Of course, from my room upstairs, I am one floor above most of the action. But they have visited me, and I hear stories. It is interesting to note that, as I predicted, Erin’s enthusiasm has tempered and matured now that she has had to do the weekly cage cleaning :-). She still loves them though…

Catherine has recently turned 17. Almost an adult! She has an exciting week underway. Catherine is part of a choreographic workshop at her high school. After months of preparation, this week has 7 evening shows. Seven!! She is pretty pumped, especially since she is almost recovered from a long illness (see below) that kept her away from school for five days. It’s pretty amazing what kinds of opportunities are available at school to do really big things outside of the classroom, especially in the arts. Catherine certainly puts a lot of time and energy into band, dance and choreography at school.

Kristine has been really really ill. The kind that comes every couple of years or more. In fact, all of us have had the joy. Erin fought it off again and again over a couple of weeks. I didn’t do too badly. It keeps hitting me, but is almost finished. Catherine missed a fair bit of school. Kristine has so far missed 7 days of work. She tried to go in this Wednesday, but had to come home half way through the day. Catherine’s school seems to have a lot of students with it, but no one that we know of at Erin’s school or at the hospital where Kristine works. Hopefully Catherine will make it through her busy week intact, and Kristine will be strong enough to return to work by Monday.

I have been following the blog of a young woman from British Columbia who has profound neurological lyme disease. She was one of the main lyme sufferers portrayed on the Nov. 14, 2009 CTV W5 show. Nicole’s blog provides a glimpse into the joys and sorrows in the life of a bright, creative Canadian who suffers incredibly from lyme disease and yet is so courageous and inspirational. The stories of her travails with the medical system are sad, tragic and humorous all at the same time. Along with my own experiences, her stories intersect in what I call the lyme disease leper colony, the lyme disease hot potato or the lyme disease “no man’s land”. Basically, doctors that are willing to wholly commit to a lyme patient and endure endless persecution in the process are extremely rare. Do you really think I love to lie in bed, without a lyme literate medical doctor by my side? Enough on that. Give Nicole’s blog a read if you get the chance. It is raw, challenging, inspiring, disheartening, and ultimately a peek inside the soul of a great woman who never gives up.