Elizabeth Margaret Evans was the Western Canadian Champion for the one-mile swim. The family lived at 7th and Vine in Vancouver, and spent a lot of time at the beach or Kitsilano pool swimming.

I went to visit Betty today. She is very close to death. Her breathing is irregular.  I talked to her about memories I had of her, of the people who are waiting for her, how she will be embraced by light and love when she leaves us.

I read Psalm 23 to her to provide her comfort, just like I did with mom 2.5 years ago. She opened her eyes near the end of my visit but I wasn’t sure that she saw me.

I came home and called my sisters again to let them know how close to death she is. Miriam will be here tomorrow night.

This is one of my favourite pictures of my biological mother, Elizabeth (nee Evans) Fleming, when she was about 11 years old. She looked confident and on some kind of business, walking downtown on Granville Street. She was a champion swimmer and became a journalist during WWII. She lost her job when the war was over as they were no longer interested in women journalists. She moved away and taught English in Quebec, then worked in Ottawa where she met her future husband, an American studying in Ottawa.

Betty has been living in a facility for several years. Over the past weekend her care has been downgraded to ‘palliative’, meaning they will provide what they can for comfort but no medical intervention. She is 87 years old. I have called my two sisters (Oklahoma, New York) to inform them of this change and to prepare to come to Vancouver for her funeral. The three of us sisters have never been in the same room all at once.

I walked up to Mountain View Cemetery today to find out more about costs etc. to have her buried with her father, Charles Edward Evans.

The Evans section is four plots at OLD/3/2/21 and is directly in front of the most prominent grave marker at Mountain View, just under the tree in the foreground on the left.

I want to be buried here in the plot on the far end, under the tree, in #16. This is where my great-uncle John W. is buried, who died as an infant in 1899. With him is his older sister Laura Winifred, who died in 1958.

Mountain View supports green burials. We will be burying Betty in a simple casket that Daniel is currently building. She will be at rest after a challenging life.

When we first started talking about the MS Walk in February, I asked the group how much they managed to bring in last year. It was about $5,000. So, I encouraged them to raise the goal and see. So, we decided we would try to raise $6,000.

Yesterday afternoon, our group passed $12,000, double our original goal. I am so proud of everyone for digging deep and working for it. It’s hard to ask people for money, especially when you have a mysterious disability. And MS is scary.

As of 10:00 this morning, for online contributions, our team is #2 in Vancouver. I am #3 of individual fundraisers, nearing $6,000.

You can help me reach $6,000 by making a donation. I only have $222 to go. My personal fundraising page can be found here.

Daniel met Tom Browne when Tom was doing his Ph.D. in mechanical engineering. at McGill. (Daniel’s Ph.D. is also in mech eng from Sherbrooke University.) They worked for the same research institute, Tom at the head office in Montreal, Daniel in the educational branch in Vancouver. Over the years they became friends. And when Daniel and I met, visits with Tom were part of his business trips out here. Whenever Daniel went to Montreal on business, visits to Tom and Mary were part of the routine. Mary and I didn’t travel back and forth as much, but we did get a chance to meet a few times.

When I sent out my first e-mail to ask for contributions, it was also an opportunity for me to tell people what was happening in our lives. I included Tom in the group mailing somewhat reluctantly as we knew that Mary was involved in her own battle with cancer. I was surprised and choked up with the response — a touching note and the largest donation I’ve received to date. It galvanized me and Tom encouraged me to raise my goal and keep on.

This week I asked Tom if he would be willing to write about why he donated to my campaign. He obliged and sent photos too.

Yes, life can be a challenge. I guess in our case we’ve had 32 years together, and have raised two smart kids and watched them grow up and not need us much anymore. We figured we’d have two or three more decades together, filled with travel to Tuscany or Bali, playing with grandchildren and lots of other great adventures, and the unspoken arrangement was that one of us was going to get sick first and the other one would be there as support. When Mary was diagnosed with cancer last summer, we were shocked because we just didn’t expect it to happen quite so soon.

There has been lots to work through. It is easy to blame the other, whether you are the person suffering (he/she doesn’t understand what I’m going through) or the other (he/she is always whining, what a pain). In reality the partnership is just that, a partnership, and trust and understanding on both sides is essential. Mary tries not to feel guilty about needing help, and I do my best not to get frustrated at her condition which isn’t really her fault, anyway. I agreed to be there in cases like this, which certainly seemed unlikely at the time, and in any case, if the roles were reversed, I know she would be there for me.

In times like this, focus becomes critical. I recall, a number of years ago, being solicited by a business acquaintance to support his cancer run in memory of his Mom and when I looked down the list of previous donors, there was a large number of $25 to $50 donations, and one from a mutual friend for $500. I decided from then on to focus and to provide large cheques to charities, but only in a small targeted range, precisely because a big donation can encourage others to think big. Most professionals can afford $500 (even if they don’t think they can) and most will get a decent tax break, and I know I can drop that much in a single trip to the Mountain Equipment Coop to get new riding gear, a bicycle chain and some brake pads in the spring.

So when I heard that Jennifer and Daniel were facing similar life-changing events, I figured the least I could do was support the charity, especially given that I can’t exactly drop by with a pan of brownies to cheer them up. (We are 3 time zones away, in Montreal).

Meanwhile there have been highlights: our daughter’s marriage in August 2012, followed by her pregnancy (due date mid-June 2013). My Dad’s 90th birthday is coming up in May. Each day brings joy at being alive, with close friends and family joining us regularly for meals and special occasions. We take it a day at a time.

Thanks Tom and Mary. We are blessed to have friends like you.

I met Stephen Hammond through the Vancouver chapter of the Canadian Association of Professional Speakers (CAPS). I joined because I wanted to learn how to communicate issues related to aphasia and my work as founder of the BC Aphasia Centre. I learned so much there from our guest speakers and other members. During that time, I led the organization I founded to transfer assets to a larger organization to continue the work. But I stayed involved with CAPS on the board and made plans to try to develop a new specialty area. Stephen was President of our chapter during my first year as treasurer.

Stephen is a former lawyer who in now a speaker, author, educator and trainer in workplace and community human rights. Over the years, Stephen and I have remained friends. We have a common interest in politics, and his mother was an MLA in Manitoba. Stephen and his husband Jack have been generous with us, inviting us to interesting social events. And every time I ask for a donation for something, they are there to support me. They are usually among the very first to step up. It means a lot to me to have that unquestioning support.

During my time at CAPS, I became known as a networker and informally coached a couple of colleagues on the art of networking. It served me well as I have a very good memory for faces and names. I pray that the MS doesn’t take that away from me.

In 2009, I helped Stephen get a chance to meet up with his old professor from Osgoode Hall, the former UN High Commissioner for Human Rights, Louise Arbour.

He wrote a nice blurb about it on his blog.

On Monday night at the University Women’s Club in Vancouver, I was lucky enough to get a ticket to a sold-out speech given by Louise Arbour, thanks to my friend and networking maven, Jennifer Sweeney. Anyone who knows me, knows how much of a fan I am of Ms. Arbour. I’ve talked about this uber-talented and brilliant woman, since she taught me Criminal Law at Osgoode Hall Law School years ago.

As I look at this photo and read the blog, I find myself missing that person who could ‘work a room’ and figure out who should meet whom. That was my favourite thing to do, to help people connect with each other as my way of helping. Exactly one year later, my serious facial pain started and I haven’t been the same since. But since my surgery (balloon compression rhizotomy of the right trigeminal nerve) almost four months ago, I am starting to come back . . . stay tuned.

My personal fundraising page can be found here.

Thanks Stephen and Jack for believing in me.

I drove over to West Vancouver early yesterday morning for my shift as a volunteer at the North Shore MS walk. Despite the forecast for possible rain, the drive over the Lions Gate bridge was absolutely stunning and reminded me of how fortunate we are to live in this beautiful city.

I was a bit early as there was little traffic in the usually congested route, so I walked around a bit and took photos of volunteers. I also had the chance to meet two of the staff members of the MS Society that I hadn’t met before.

My shift was at the first rest stop where we handed out water and encouraged the participants. Every time I saw the blue t-shirts of the UBC Remyelinators team, I asked them to “please find a cure” and they responded, “We’re trying!”

The volunteers at the rest stop were four lovely young people as well as the father of the two young women. We all had a chance to talk about our connections to MS as well as other connections and common interests. I had such a nice time with them and really appreciated the chance to help out a little bit and meet new people.

In 1989, I arrived in West Lafayette, Indiana to attend grad school at Purdue University. There were five Canadians in my class that year, one of whom was the gorgeous Indira Bhatnagar of Cornwall, Ontario. I remember the first time I met her new boyfriend, Drew Feustel , at a Halloween party. They were both counselors at the undergraduate residence halls and dated right through grad school. I was a staff resident at the graduate residence hall and that position came with a room large enough to entertain guests. I hosted a Pictionary game one night and Indi and Drew came.

My time at Purdue University was exceptional and I met so many interesting and smart people. Even though I knew that many astronauts had studied there (Neil Armstrong, Gus Grissom, Eugene Cernan), it never occurred to me that I might meet somebody who would become an astronaut.

After graduation, we went our different ways. I heard through the grapevine that Indi and Drew got married and moved to Kingston, where Drew did his Ph.D. at Queen’s. Then Indi got in touch with me to introduce me to her younger sister who was studying at UBC and interested in speech-language pathology. It was through that relationship with Indi’s sister that I reconnected to the amazing adventure that was in store for them when Drew was accepted into the astronaut program in 2000.

In 2008, an envelope arrived from the Johnson Space Center in Houston with an autographed photo.

Shortly afterwards, we received a message asking us to let them know if we were interested in attending the launch of Atlantis, on STS-125, the last mission to repair the Hubble Telescope. Of course, we said ‘yes’ — the details of that experience will be in my ’25 great life experiences’ category.

Drew’s second mission was the penultimate space shuttle mission, STS-134 on Endeavour, and went to the International Space Station. It was most exciting to be connected to all the communications from ‘ground control’, i.e., Indi’s internet connections.

Indi is a remarkable fundraiser herself, raising thousands for the American Heart Association in honour of her father. I am so grateful that the Feustels have honoured me with a donation for the upcoming MS Walk .

Yesterday, I was at the MS Society AGM and Education Day in Richmond. Early in the day, a young woman walked by who noticed my name tag and said hi. It was Sarah, one of the top 10 fundraisers in Vancouver. As I’m a bit of an internet nut I read the info of everyone in the top 10 and noticed that Sarah Le Huray had a blog. When I read it, I was really moved and had to leave a comment.

I commented on her post titled Admittance where she said this:

Maybe it was time to share some of my other, perhaps less-pleasant, feelings.

So here goes…

I feel alone.

I feel sad.

I feel scared.

I feel stressed.

I wish I had more offers of help.  Even a phone call or email to see how I am doing.  A card in the mail or a visit for coffee and cake.  I love each and every person who is in my life, and I want them to know how I am feeling.  I know that many friends and family will not know what to say or do to make me feel “better,” but that’s okay.  Say and do whatever you want.  We can talk about other things.  We can just hang out.  It can be 5 minutes or 5 hours.  It all helps.  And it all makes me feel more human and more happy.  And right now, anything that enduces happiness is a good thing.

People – I miss you.  Let’s have some time together.

Wow — that knocked my socks off as I was feeling exactly the same way. I really admire her writing. I’m a competent writer but I write just like I talk. I don’t write like this:

From Emotional Dehydration

Last night, as I was trying to fall asleep, the only thought that kept creeping into my subconsciousness was this:

“This is my new forever”

And it’s true. This is my “forever.” This will be a constant in my life. When people, jobs, and homes come and go, this will always be here. Always. And I hate that.

I just need to say that… I hate that…

We exchanged e-mails last night and learned we have a common interest in aphasia as she worked with the type of aphasia that is related to dementia at UBC in the Alzheimer Clinic. She had already posted about the day and her thoughts being with so many people with MS. For me, most of the education was familiar territory, and 3 of my former colleagues at GF Strong were presenting. She wrote so nicely about the day and mentioned meeting me too.

But the highlight of the day for me was meeting Sarah

So, if any of you who are reading this have a chronic illness, I encourage you to spend some time with Sarah on “ When life gives you lemons . . .”

If you are so inclined, leave her a donation for the upcoming walk.

I received my medical records from UBC and VGH recently. A lot of people don’t know that you can get copies of all of your medical records. It takes about 6-7 weeks to get them after you request them. I find it amazing to read what people think about you and what they say about you in the chart notes. In general, these records were a million times better than the last hospitalization where there were so many errors, oversights and judgements.

The most surprising note in all of these records was from the pharmacist who really went overboard with my possible suicide. She suggested that I only be given a one week prescription upon discharge for the drug I was taking, Dilantin or phenytoin. She had no idea the amount of pharmaceuticals I had at home and there are plenty of ways to try to kill yourself if you’re going to do it. I was very unhappy at VGH because I had gone over expecting to have surgery and it didn’t happen. After over a year of almost constant pain, social isolation, looking for answers, then finally given some hope that it could end, it was taken away. I was devastated.

The neurosurgeon wrote quite a good report. He had some of the details in the history wrong and there are times when he says things like “there is some confusion in the history at this point” when there was no confusion on my part at all. The confusion lay with the person who took the history, the neurosurgical fellow, who is not the same person dictating the report. The fellow had asked me for the full history, so I gave it to him. So, in this official report, there are errors in dates, lengths of time of symptoms, etc.

The neurosurgeon did say that I was ‘overwhelmed’ with the diagnosis of multiple sclerosis and trigeminal neuralgia. Well, not really. I knew I had trigeminal neuralgia since May of 2010. And I knew I had MS for sure after my second MRI in July 2012, but I didn’t have it confirmed by a qualified/competent neurologist. I’m not a neurologist so I can’t self-diagnose, even when I can see classic MS lesions in my copy of the MRI. (The neurologist I had been seeing told me on October 9, 2012, that I did not have MS.) I did not have the lesion in my pons identified until Neurologist #5 looked at the MRI on November 16, 2012. I was overwhelmed with the PAIN, the PAIN, the PAIN, the PAIN, the PAIN, the PAIN, the PAIN . . . still don’t know why that doesn’t get across. Apparently, in his words, “the forehead pain scared her and prompted the hospitalization.” Well, it didn’t just ‘scare’ me, I was in my GP’s office on my knees, screaming in pain. I guess you could say I was scared. You’d be ‘scared’ too if you were being electrocuted in your head.

One thing I liked about the neurosurgery report was his description of me as a ‘meticulous historian’. I agree with his comment that the amount of detail took away from the “greater picture.” But how was I to know which details are relevant or might provide clues to the doctor? His fellow, a doctor from Egypt, was fascinated with the book I had with me, “Striking Back”, the handbook on facial pain written for the layperson. He was surprised to see that it had a photo of the exact machine that they use for rhizotomies at VGH. This made it into the report: “She presented with a huge textbook on facial pain and was very knowledgeable about percutaneous rhizotomy and has already been on our website.”

So, I ask you, is the paperback book in the photo a ‘huge textbook’? Hardly. It’s comprehensive and full of really useful information for people suffering from facial pain. It’s not a huge textook like the one I have on neurology, “Principles of Neural Science”. It’s interesting to me to think about the visual image evoked with the language. If the paperback on top is huge, how do you describe the one on the bottom? Really huge? Huger? It made me chuckle.

These are the brain images of the last MRI on March 4, 2013. I chose images similar in orientation to the ones from July that I wrote about here and that show the lesions well.

In this image, it’s the white spots that are the lesions. There are a lot of them. This satisfies the ‘dissemination in space’ criterion for a diagnosis of MS. As there were no recently active lesions, the ‘dissemination in time’ criterion could not be met with this MRI alone, although it is highly unlikely that all of these lesions occurred at the same time. The neurologist then relies on your history and description of symptoms. In addition, an experienced neurologist can tell if some lesions are ‘old’ lesions. Neurologist #5 pointed out an old lesion to me on November 15.

This view of my cerebellum is very similar to the one from July. As there are only a few lesions here, I believe that’s why my balance and coordination have been relatively spared.

This view is similar to the one from July except that the lesions are easier to see. It was taken after the enhancing agent was administered to me. If I had any lesions that were active, they would be even brighter.

I studied all the images and each slice through the brainstem. This small white spot to the left (right side of my head) that I circled in blue is my best guess for the lesion in my pons that has caused me all of this hellish pain. Bear in mind, I could be wrong as I’m not a neurologist, radiologist or neurosurgeon.

I’m praying for two things. The first is that this lesion doesn’t get active again. The second is for the lesion to heal. Maybe it’s three things. Let’s add ‘no more lesions’ to the list.