I had such a pleasant experience with Dr. Kaufmann’s team at Winnipeg Health Sciences Centre. When we were making arrangements a couple of weeks ago, I told his nurse that I could use a little love after the neglect and abuse I suffered in Vancouver. And they delivered . . . out of pain after the surgery, friendly staff, nice overnight stay. The ward was quiet so I could practise my pain-free speaking to any nurse willing to lend me an ear.

I also had time to read a most-entertaining book I picked up at the airport on our way out here. All in all, a pleasant experience. And now that I have Daniel captive here for a few more days, we’re going to catch up on some movies as well as see my friend, Allison.

Our Christmas eve turned out pretty well once I got the pain triggers under control by slathering some lidocaine ointment on my lower right teeth and gums. I was able to have a bath, then welcome old high school friends who visited. We had neighbours visit and we visted other neighbours, so it was a pretty good day. I only stayed for a short while at the neighbours’ and Daniel stayed to have dinner with them. It was nice to be out of pain long enough to do some ‘normal’ things. When Daniel came home, we opened our presents.

Today has been much the same, with phone calls from a couple of dear and thoughtful friends. I am so grateful for all the thoughts and good wishes being sent our way from all over. Each card, e-mail, e-card, and phone call has had special significance to me this year. And to all the friends and family in New York, Maryland, Ohio, Texas, Oregon, Quebec, Ontario, Manitoba, Alberta and BC who have wished us well and are praying for us, I want to extend my thanks to you. In less than 48 hours, I should be out of surgery and waking up.

Wow — the pain got worse last night, even after increasing the meds yesterday. We were woken up at 6:00 am by Daniel’s uncle in Quebec who confused the time zones and thought we were 3 hours ahead. I couldn’t get back to sleep. Had big pain breakthroughs all across my face and in my mouth including the tooth when eating figs first thing. If you could see all those nerves light up you might get a sense of what it’s like to be electrocuted by your own body. That’s what it feels like — being electrocuted. The phone rang again at about 10:00. It was Winnipeg. My surgery is being moved up to Thursday afternoon from Friday. Hurray!!! That’s one less night of suffering, provided all goes well.

The last couple of days have been rough. Lots of pain breaking through the meds. I’m probably using more of the numbing ointment than I should but it helps the triggers on my lower gumline. Right now, as I type this, my mouth is quite numb and I’m doing OK. Gearing up for when I eat/drink lunch. Oh how I dread eating. I dread waking up in the morning. I dread having to talk. I dread flossing and brushing my teeth. I’m sick and tired of this. THIS IS NOT A LIFE!!!!!!!

I went to the neurosurgeon’s grand rounds today. I was disappointed because he didn’t say any of the things I asked him to with the emphasis I asked for. I really wanted him to say to the doctors/medical students that it was really important to do an MRI for anybody with facial pain, even if the presentation is unusual. (Of course, in my particular case, it is beyond the pale that the gastroenterologist who admitted me last year made up a facial pain diagnosis for me — post-herpetic neuralgia — and thought I had a conversion disorder and my former neurologist didn’t bother to look at the images once I finally had an MRI or even consider that I may have TN from MS, although there were red flags waving all around him.)

I have to put this in context, of course. The conversation we had two days ago was significant for me and I believed I had been heard. Now we go back to this neurosurgeon’s life. He had been out of the country and had just returned two days ago. He has a significant number of demands being made on him from many different directions. In fact, during his 40 minute presentation, his communication device rang/buzzed several times. I’m just one sad story among thousands of other stories he deals with or has dealt with. I am sure that after our phone call, he didn’t look at his presentation or even think about it until he was giving it, as it was at a level I could understand, and he’s probably given it many times.

It is also disappointing that nobody in his office responded to the urgent re-referrals to his office from the MS neurologist or my GP. The MS neurologist contacted his office and learned he was out of town. My GP didn’t hear a thing. I guess his support staff are too busy too. And this time of year seems to send the whole system into chaos.

So, it’s hard to feel anything but mild disappointment. My story is my story and I’ll work on ways to tell it so that it has an impact on how care is provided. I don’t have the profile or the prestige of a top-notch neurosurgeon. And I never will.

I had a chance to meet one of the doctors from the St. Paul’s Pain Clinic, so that was a plus. And when I got home, I had a letter from a new neurologist with an appointment scheduled for mid-January. I hope that she will be able to support me through my MS. The lovely MS neurologist will continue to see me on an annual basis once our preliminary work is done (get out of pain, take baseline measures with enhanced MRI, eye exam, decide on treatment course, if any) but I’ll need a neurologist I can see more frequently if necessary. So, that’s good news. Once we establish a working relationship, I can have my case transferred.

We woke up to a dusting of snow this morning. I went off to the local hospital for pre-op blood work. After breakfast, the phone rang. It was the local neurosurgeon calling. I knew he had been out of town and was reviewing his messages. He responded quickly to the note he had from the MS neurologist who told him that the Dilantin had failed , the Lyrica was not managing my pain, and I was going east to get surgery. We discussed the procedure briefly.

I had heard from a friend who works at St. Paul’s Hospital that this neurosurgeon was going to be doing ‘grand rounds’ this coming Thursday about Pain and Trigeminal Neuralgia. I asked him if he would mention to them that it would be important for them to make sure that an MRI has been done before they assume that a person with facial pain and gastrointestinal problems is a psychiatric case and gets treated the way I was treated, with the misdiagnoses of conversion disorder and post-herpetic neuralgia. I told him how they did a ‘tough love’ approach with me by threatening to pull out my tube feed, and sent me home with a whack of gabapentin and told me to take as many of them as I needed and to eat more.

What was most refreshing for me was to be listened to and he was audibly surprised to hear what happened a year ago. And then I proceeded to tell him where another of my brainstem lesions was located. A lesion in the left medulla: Vagus, he said, without missing a beat. Crystal clear to him. (Many aspects of digestion are controlled by the vagus nerve. It is first stimulated by the smell, sight, and taste of the food as it enters the mouth. This sets in motion the release of stomach acids and digestive juices. Branches of the nerve influence swallowing, while others control peristalsis, the contraction of muscles in the digestive system that move food along. Excretion of wastes is influenced by the branches of the nerve that reach the colon and kidneys. — from Wise Geek)

He also understood why I told him what happened to me. In his words, his audience will be people who need to hear the message. I started having pain near the end of the conversation and he apologized to me for causing me pain. How nice. He wished me well. I know our paths will cross again. I felt respected and listened to.

The sun came out today and I was doing pretty well. It’s been so long since I’ve been able to walk without triggering the facial pain but I managed to go out food shopping on foot along Main Street. I was out for about 1.5 hours and had a chance to visit some of my local friends at Yek-O-Yek and Caffe Rustica.

I also made contact with an old friend who lives in Winnipeg. She’s another speech-language pathologist who is driven in the same way that I was. She’s still going strong and has her own business now. I am so proud of her. Check her out at her company called SpeechWorks where she does work with aphasia and other communication disorders.

I first met Allison when she came to Vancouver in 2004 to present at the two-day workshop I organized called “Fun and Practical Approaches to Aphasia.” I visited her in Sheffield, England in 2005, where she was working for a year. And I also stayed with her family when I went to our national convention in Winnipeg in 2006, where I was presenting. I came home with her most brilliant “Aphasia Toolbox” and was in awe or her ideas and energy. I think we’re going to have a chance to catch up again when I’m there. Hurray!!!

with Aussie friends, Plakias, Crete, June 1983

In September, 1982, I set out for a planned year-long adventure on my own in Europe. I had my return airfare on British Airways paid and my Eurail and Britrail passes paid for. That left me with $10,000 for the trip of my life, and I flew into Heathrow with my sleeping bag and backpack with Canadian flag patch sewn on.

There are far too many experiences in that one year to write about. There were many adventures and opportunities taken — including some stupid decisions — part of the experience of being young. I went to most countries in Western Europe, and also did a foray into East Germany as I wanted to visit Berlin and see the Berlin Wall.

Among the highlights were time spent in Greece and Spain. My favourite place in Greece was on the south shore of Crete where the photo above was taken. We fell into a nice daily routine of yogurt and honey for breakfast, Greek salad and pita bread with a large bottle of beer for lunch, then a nice Greek dinner, souvlaki or moussaka or roast lamb etc, retsina, then baclava and coffee. Mmmmm. Between meals we would go to the beach or play “500”, an Australian card game similar to Euchre. I spent about 10 nights in Plakias and was tempted to stay longer, but I knew I needed to move on. The Aussies pictured above went to Turkey from Crete, I went to see more of the islands (Santorini, Naxos, Paros), then headed up to Austria. When I caught up with them later in London, I wish I had gone to Turkey with them. It’s one of my small regrets.

The absolute highlight was time spent in Spain with my old high school friend, Joan. She was studying at the University in Granada. I was feeling a bit homesick at Christmas, so I took the train down to Granada to spend it with her. Back then, you had to switch trains at the French/Spanish border as the train track gauge was a different size.

After a post-Christmas trip/car-tour (Toledo, Madrid, Salamanca, Santiago de Compostela, then south through Portugal) I left for a month to see Italy, then returned in February to enrol at the Universidad de Granada for a three-month course, Espanol para Extranjeros, or Spanish for Foreigners. Joan had a group of friends who were locals and it gave me a chance to experience Granada and surrounding areas in a way that I wouldn’t have had as a regular tourist.

As I look at my photos of the Alhambra where there are no people, I realize in hindsight how fortunate I was to be able to go there many times without experiencing tourist hordes. It was a different time, only 7 years post-Franco, and Spain wasn’t fully explored by travellers as it is now.

I received the best news I could have hoped for today. I’ve been accepted at the Centre for Cranial Nerve Disorders as a patient and scheduled for surgery right after Christmas. They initially offered me December 27 which I accepted, even if it meant having to go to Winnipeg before Christmas. But the logisitcs for pre-surgical meetings with the surgeon and the anesthesiologist made it more practical on their end to book it for the 28th. And that makes it a bit easier for us as we can travel after Christmas. The surgeon, Dr. Anthony Kaufmann , is exceptional, and I know I will be in excellent hands. A couple of weeks ago at the local Trigeminal Neuralgia support group, I spoke to a woman who had surgery there (a different kind of surgery, an MVD, a microvascular decompression, for the same type of pain but not caused from MS) and she said the whole team were caring and it was a really positive experience for her.

There are nothing but very nice comments about Dr. Kaufmann on the rate MDs website. Most of them are for another cranial nerve problem, hemifacial spasm, but there are a couple in there for TN.

I spoke to my very nice MS neurologist today. He is so lovely and respectful in all of our conversations. He’s the consummate gentleman. He’ll do what he can to help me get an MRI quickly if I need one and he’ll speak to both neurosurgeons on my behalf. I’m waiting to hear back from the one in Winnipeg. The neurosurgeon based here is out of town until Tuesday. As I say in the video, I’ll jump on a plane tomorrow if they could help me in Winnipeg. We will also need to be monitoring my liver enzymes to make sure that they are coming down, and to make sure that it was from the Dilantin and not continuing to rise with the Lyrica.

Lunch time. I dread my meals. So unlike how I used to be.

I decided to start with Camp Latona instead of Purdue because it has as profound an effect on me at an important time of my life. As I’ve been developing my list, I realize that going through my top 25 great life experiences more or less chronologically makes a bit more sense than trying to rank them. They were all special to me. So, it will be a bit like writing my life story. A vanity project, for sure — but when you have a major health crisis and no parents or children, you start to realize that if you don’t record your presence, you’ll be forgotten very shortly after you’re gone without any trace. Since I can’t work now, I have the time.

In 1970, I first went to Camp Latona , situated on the north side of Gambier Island in Howe Sound. I was in a cabin named “Haida”, my counsellor was “Miss Kathy”, the camp director was “Sister Theresa”, and we had powdered milk on our cereal. I kept going back every summer in session 1, the first two weeks of July. Session 1 was always the wet session and the girls in Session 2 always got the sunshine. At camp reunions we would identify with our session — those of us from Session 1 liked to talk about how we formed our friendships as we struggled to stay dry in our primitive lean-tos with those old sleeping bags that never dried after they got wet. I grew up at Latona, as a camper until I became a counsellor-in-training, then a counsellor. I also spent time as the “outtrip director” at boys camp in 1977. I returned in the late 80s as a counsellor, then the next year as the Junior Counsellor director and Director of Senior Co-Ed Camp.

Latona was a very special place. It was there that I had the opportunity to see myself in different, positive ways. Growing up unattached in an alcoholic home was very difficult for me, and all of us in my family suffered in our own unique ways. I formed healthy friendships there that helped me get through the challenges of adolescence.

When the camp closed in the mid-90s and was sold, I never thought I would ever see it again. Declan Lawlor, “waterfront director” in the 80s, bought Latona and has re-opened a summer camp. Declan and I have fond memories of pranks and being captains of the “Gumbys” where we painted ourselves green and made carboard heads in the shape of our favourite flexible character. I am so glad that children in Vancouver have a chance to experience Latona again. It was my home away from home.