1. Camp Latona

2. Little Flower Academy – high school

3. Solo trip to Europe

4. Purdue University — SLP study, work as a staff resident, trips to Chicago, Toronto, and New Orleans

5. Marshfield Clinic — clinical fellowship in Speech-Language Pathology

6. SLP work at GF Strong Rehab Centre — community outreach service, outpatient program, special, memorable clients

7. Volunteer at Vancouver Writers Festival — picking up writers at the airport, including Rohinton Mistry (his first trip to Vancouver and I showed him around Granville Island on the way to his hotel) and hosting a couple of memorable events, including ones with Alberta Manguel, Michael Moore, Sherman Alexie and many others

8. Went to a Harvard Continuing Education week in Boston on “The Neurology of Behavior” hosted by Antonio Damasio . Also managed to squeeze in a Vancouver Canucks vs Boston Bruins game at the old Boston Garden. Pavel Bure scored the overtime winning goal 4-3. On that same trip, I took the train up to Stamford, Connecticut to see very good old friends (Martha and Phil) and had a personalized tour of the highlights of New York City that included an elevator ride to the top of one of the World Trade Center towers.

9. Travel to visit good friend in Vermont and drive through several states and see the fall colours in Quebec, New Hampshire and Maine as well as Vermont

10. Finding my biological family in 1997 and a new cousin in 2014.

11. Daniel and the summer of 1998

12. Buying my dream house in 1999

13. Many trips to Merville, Vancouver Island and Saturna Island, thanks to generous friends

14. Road trip to Yosemite National Park via Washington, Oregon and California coasts in 2000

15. Trip to Helsinki, St. Petersburg (Russia) and the Baltics (Lithuania, Latvia, Estonia) in 2001

16. Trips to Haida Gwaii — first one solo in 1996 and second one with Daniel in 2002

17. Winning media award from national SLP organization and going to St. John’s Newfoundland to receive the award in 2003.

18. Founding of the BC Aphasia Centre (2000) with lengthy article by Daphne Bramham in the Vancouver Sun (2003), Volunteer Vancouver Award nomination and CBC National Radio interview with Shelagh Rogers, June 24, 2004 ( see media page )

19. Provincial jobs — great opportunity to learn new skills and learn more about the diversity of British Columbia with two contract positions: Coordinator for “Strengthening Families and Youth” with Canadian Mental Health Association, BC Division, and Provincial Consultant for Pediatric Therapists, contract through the Ministry for Children and Youth. The website I started is still there!

20. My dad’s death — I wrote a special letter to my dad on his 75th birthday to make sure that he knew how important he was to me in my life. When he declined suddenly with aggressive cancer two years later, I was glad that I had done that as we had little time for quality conversation. A talented friend help me make a beautiful funeral card for him.

21. Politics – I enjoyed getting involved in federal politics and went to my first national convention in late 2006. Being involved with the election of our local MP last year was also a life highlight.

22. I got involved with the Women’s Campaign School with the Canadian Women Voters Congress . I was president from 2008 to 2011. I met a lot of interesting people and learned a lot in that time.

23. Florida and astronauts. We were invited to the launch of STS-125 by a Purdue colleague, Drew Feustel, in 2009. It was a great and memorable experience. The year before I had a chance to meet Marc Garneau , Canadian astronaut through politics, (I found myself in a foyer alone with him and told him about Drew Feustel whom he referred to as “the half-Canadian”); John Herrington , the first American Indigenous astronaut, through a friend who was working on a children’s show through APTN. And then we got to meet Drew’s crewmate and space walk partner; John Grunsfeld , when he was giving a lecture at UBC about repairing Hubble and his experiences as an astronaut. Drew’s wife Indi let him know that we were attending the lecture so it made it easy to approach and chat with him before the talk.

24. Being present for my mother’s death in 2010 and organizing a funeral with her ahead of time and having it work out so beautifully.

25. Being well enough to travel again with Daniel, with a trip to Washington, DC, Long Island (to see my sister) and NYC.

26. Being well enough to enjoy life — good food, riding my bike, seeing friends again after changing my diet and becoming inspired and a follower of Dr. Terry Wahls and having the chance to meet her !

by Daniel Ouellet (husband and guest blogger)

Quite a while ago, Jennifer asked me if I would write a guest blog post, and I accepted eagerly although I didn’t know what to write about at the time. I let the idea simmer for a bit. I wanted in some way to portray my perspective on her story, or my experience as a witness to her ordeal and pain. Then it dawned on me that what many people seem to marvel at is that I stayed at her side through this hell, so I decided to write about why I stayed.

Chronic illness is a deal-breaker in relationships, and stories abound about it. A friend openly told me that he would have bailed out if he were in my shoes. In truth though, I never even seriously thought about leaving, and I would venture to say that there are also countless examples of committed partners who stand by their mate. I’ve met a few, so I know I’m not alone.

You might think that acceptance of your lot in life is part of it, but that to me sounds like quiet desperation. Maybe it does carry you through sometimes, but it takes a lot more than that to endure years of set backs, frustration, and tears. I did ask myself at times “What do I need to learn from this? Why should it be my fate to have to live through this? What did I do to deserve this?” You know, the Job questions.

I flipped the table too, and asked myself how I would feel if I became ill and my wife left me as a result. The answer is “shitty”, of course, but “Do unto others as you would have them do unto you” is still far easier said than done. That said, I’m one of those who have a conscience that won’t let them get away with stuff, so for me the Golden Rule applies. Besides, Jennifer didn’t ask for this any more than I did, and her suffering has been far worse than mine.

But at the bottom of it, I stayed, quite simply, because it is the only loving thing to do. It takes a good dose of selflessness to stay, and it has tested my patience and my capacity to love countless times. I should add that I can’t judge those who leave, because I can’t say that I would have stayed under all circumstances. Every situation is unique. What made a huge difference and tipped the scale for me is the tenacity and courage that Jennifer has manifested throughout this ordeal.

And in the end, despite all the arguments, tears, and emotional pain, I have absolutely no regrets about staying. It was the right thing to do.  It deepened our relationship, it taught Jennifer about the true nature of love and perhaps helped her realize that she is worthy of the deepest love, and it taught me a great deal about my own humanity.

This past week we’ve had some warm, summery temperatures. On Friday (two days ago), I put on a summer dress and rode my bike to my new volunteer position. Later on, Daniel took a photo of me with a little bit of a lilac tree we rescued from a house demolition last year and it seems to be doing very well. I love lilacs and look forward to having this tree in the back yard.

Over the past month I have worked on a few little projects. I did six sessions as a volunteer patient at VGH with five neurologists and one neurosurgeon. I was the ‘symptomatic’ patient for cranial nerve exams. One of the instructors was the head of the MS Clinic. I made sure that was on my best behaviour for that! Different instructors take different approaches with me. Some let me tell a lot of my story and others don’t. My favourite of the last batch was Dr. Esma Dilli. She was kind and really smart. She knows a lot about TN and I was really impressed.

I have been fundraising again for the MS Walk for our team, Wahls Warriors. Right now, our team is #1 in Vancouver and I’m #2 individual fundraiser . These things will change closer to the walk but I’m pleased so far. Getting donations every year has its challenges. Most people I ask don’t ever give but if I don’t ask, it won’t happen! Some people give once and never again. The former friends who have dropped out of my life are simply gone. No more donations, emails, phone calls or invitations. Others give consistently every year right away when I ask. I do know that there are so many reasons to give to many different causes, so I do my best not to take it personally.

The MS Society held an official launch for the walk last Tuesday in the heart of downtown Vancouver, and as a top fundraiser for the walk, I was invited to attend. It was nice to be included. I took a few photos of the presentations. When I downloaded them at home, I was really pleased to see my team from last year in the photo on the screen behind the speaker, Stephanie Mosher.

Other than all of these things, the regular activities that consume my time are shopping for food at the farmers market and my local organic stores, Organic Acres and Choices . And along with the shopping for food comes cooking and washing dishes! My daily routines revolve around food and chores around the house.

The sun is shining again! Time to go for a walk.

I’ve been thinking a lot lately about the many challenges people encounter when they have the great misfortune of experiencing the facial pain of trigeminal neuralgia. A few times each month I am contacted by people who are experiencing the pain of MS-related TN and looking for help. Some of these contacts are made through the TNAC (Trigeminal Neuralgia Association of Canada) and others find me directly through my website/blog.

I listen to the stories of the difficulty in finding medical support as so few people in the system know anything about TN. And even if they do, they don’t really understand how painful it is. It disappoints me whenever I encounter a professional working with people who have MS who don’t get it at all. I remember being at the MS Clinic and getting information from a nurse about drug therapies. When I mentioned the TN to her she said that she had heard it was like a bad toothache. My eyes popped out of my head when she said that and I broke down crying right there, telling her it wasn’t just a toothache — it was like being electrocuted in my head. She looked surprised but I was really angry that she was so quick to minimize it.

Another time I was at a conference hosted by the Lower Mainland Chapter of the MS Society. One of the guest speakers was a doctor who was a physiatrist, a specialist in physical medicine and rehabilitation. He mentioned trigeminal neuralgia in his description of the neuropathic pain that a person with MS may experience. He said it was like a burning in the face. Oh, is that all, I thought to myself. As the room was full and I was in the back, I opted to write out my feedback to him and asked him to make sure he learns a bit more about TN as I was really quite offended.

Then there was the time that I visited another friend with TN in the hospital. I spoke to his nurse about his TN. She asked me to spell “trigeminal” for her. I wondered how she managed to become a nurse without learning the names of the 12 cranial nerves.

So . . . if these local health professionals and experts are in the position to disseminate information about TN and to “educate” people about it, is there any wonder that people in the system who have many other things to know and learn about don’t know enough about it to be empathetic? If health professionals don’t understand the intensity of the pain, they will be treated with “callous neglect” as one of my TN friends describes it. And we end up being “treated” for “depression” and “anxiety” — who wouldn’t be depressed or anxious from the pain and neglect and sometimes abuse as I experienced?

I have been in conversation with a couple of people at the national office of the MS Society as I think we need to raise the level of conversation and get people some understanding and also some help. Fortunately, it looks like they will be doing a series on pain and my story will be featured in the first article.

I would also really like it if we had a national centre of excellence for TN. I am consistently referring people to Winnipeg and Dr. Kaufmann’s team as it is the only setting that treated me like a full human being. Isn’t that how we all want to be treated when we need help?

I was having a bit of trouble sleeping this week, so last night I made a special effort to unplug early and get to bed. I slept well and was pleased to see the sun shining in the morning. As Saturday mornings are my farmers market days, I make sure to get up early enough to be there well before 10:00 so I can get in line for the busiest vendor.

I know that I’m back to full energy when I can get this much done in one day. The sunshine and spring-like weather helps! Our camellia bush is in full bloom. So far today I have been able to:

• take a quick shower
• put on load of laundry
• make and eat breakfast smoothie
• hang laundry on line outside
• go to farmers market
• chat with several people I know at the market, both shoppers and vendors
• put all the produce away
• go to Organic Acres to buy avocados and other salad veggies
• eat lunch
• make some Wahls fudge
• wash and dry dishes by hand (yes, the Wahls Protocol means lots of dishes)
• go for a short bike ride
• gather laundry

All of this before 4:00 pm . . . so I decided to record the day before going back to the kitchen to start making dinner.

It was just over two years ago that I went to California for the venoplasty surgery. And shortly after that, The Wahls Protocol was published and I committed myself to the program. I have had no real issues with fatigue since then. I’m still able to do crossword puzzles and cryptic crosswords as easily as pre-diagnosis, and get through the day without needing to rest or nap. I’ve been to a couple of concerts recently and enjoyed myself.

I will be having an MRI next week and then seeing my neurologist next month. I hope that the results of the MRI and neuro exam reflect how I feel.

I asked Daniel to take a photo of my staples the day after surgery as I wanted a record of the healing. Each day, I had a bit more energy and felt encouraged with the recovery. I knew I was to watch for signs of infection or discharge from the wound. No issue there. And it was nice to know that once I washed my hair, my scar wasn’t visible.

And after a week, it seemed that most of the things I most feared were not happening — headache, return of pain etc. At about day 10, Thursday, December 10, I thought I was coming down with a cold as my nose started to run. After a couple of days I started to wonder why the cold didn’t evolve like a normal cold with increased congestion or a sore throat. Then I started to wonder if this was a dreaded cerebrospinal fluid leak. So, on Sunday, I wrote to Olive in Winnipeg and asked if I should be alarmed.

I received a response the next day and was advised to keep my head elevated 24 hours a day to see if the dripping would resolve on its own. In my discharge notes they had recommended I see my doctor as well. I saw him on Tuesday afternoon. He thought it was serious enough to send me to Emergency. So, I went and they admitted me for observation that resulted in an unsatisfactory experience for all involved.

It was somewhat frustrating at the hospital because I saw different people every day and each had a different opinion. I had provided them with Dr. Kaufmann’s cell phone number and email address but they did not contact him. However, on Thursday morning when they started wanting to escalate the intervention, I called Dr. Kaufmann myself to discuss. He had a different choice of management. I wanted to discuss it further with the resident who had been assigned to me that day but he was too busy to come and talk with me. The neurosurgeon whose official care I was under only saw me once during the whole hospitalization early my first morning and never came back. All communication with him took place between the residents and the nurses. Somehow, my neurosurgeon in Winnipeg and I were not part of the decision-making team.

It is very difficult to build trust when communication is poor. And I spent two full days in the hospital confused, receiving mixed messages, in less than ideal conditions.

I waited for several hours for Thursday’s resident to return to discuss and formulate a plan. He was paged and said he would be by in 30 minutes and I waited an additional two hours after that. It was approaching dinner time. I was on a ward with sick people . . . my husband had come by to pick me up, so I discharged myself “against medical advice” as the nurses had no discharge instructions from a doctor.

Upon my arrival home, I wrote to my neurologist and to Dr. Kaufmann explaining the situation to them. I am capable of doing everything that the nursing staff was doing for me at the hospital, in a much cleaner and quieter environment — monitoring my temperature, asking myself if I have any pain or headache, giving myself medications, etc. The only thing I can’t check at home is my blood pressure but it’s always 95-100/65 so it’s not really an issue as far as I can see. And we live 5 minutes away from the hospital by car or ambulance.

The irony is that last night I came down with a real cold, so that has made things a bit tricky for me. I have to stifle coughs and sneezes and make sure that I do not blow my nose. I am sitting a lot, sleeping with my head up at least 30 degrees and doing my best to eat well to maintain healing nutritional status.

My right ear is somewhat plugged so I’m taking that as a good sign, indicating that there is fluid building up there and perhaps suggesting that a leak into my ear from my skull is slowing and possibly healing.

Dr. Kaufmann has asked me to keep him informed of my status. The nasal drip has been present for 10 days and is much less than it was a week ago. If it doesn’t resolve, I may need another surgery to repair it. But we still don’t know if it’s a leak or not.

I wanted to do a brief update. I am still having occasional breakthrough pain, sometimes after eating something cold and other times just randomly when I move my head or bend down. So, I walk around like a stiff, old lady.

I’m up to 600 mg of Lyrica a day. That’s the maximum safe dose. I’m a bit less dopey than I was initially. When the pain breaks through, I breathe deeply and say to myself, “this will pass.”

The best thing about this last bout of pains is my ability to eat! I can still enjoy food as I don’t have pain triggers in my mouth like I’ve had with previous exacerbations.

We’ll have a very busy day tomorrow organizing the things we need to bring to Winnipeg.

I’m holding on. Thanks for all the good wishes and warm thoughts.

—–

Afterthought . . . I realized this morning that I hadn’t posted a comment about another thing I’m grateful for. I am able to sleep through the night without being woken by jolts of pain. So, being able to eat and sleep has made this part of the journey a bit easier.

I recorded this video last night. The pain situation has been much the same today.

I am working on getting all the pre-op tests done and sent to Winnipeg. Yesterday, I saw a GP and got all my orders for blood work, chest x-ray and electrocardiogram.

This morning, after fasting, I went for all of my tests. It was surprisingly efficient with minimal waits. The blood work should be available online very shortly.

I have my last meeting tonight with the health mentors I’ve been working with for over a year. They have been a great group of students — nursing, medical genetics, occupational therapy and dentistry. Tonight will be their first time seeing me in pain. When I first met them last year, I had just come back from Winnipeg and was having difficulty opening my mouth wide enough to chew well. So, they’ve never seen me in pain. They’ll get their chance tonight. I may only have one or two pains while they’re here but I would like them to get a sense of how debilitating it is.

I am receiving nice messages from unexpected places, including the people from my exercise class! The benefits of exercise plus the social network has been a great plus in my life. I am grateful for the kindness extended towards me.

As for the surgery on Tuesday . . . I am nervous to have my skull cut open to sever the nerve near the brain stem. But there is nobody else I’d trust do to it. Dr. Kaufmann is a great surgeon and a caring human being.

I received a phone call this morning at 6:16 am from Dr. Kaufmann, my neurosurgeon in Winnipeg. While he expressed some disappointment that the last rhizotomy didn’t keep me out of pain for longer, I wanted him to know about the wonderful things I was able to do in this past year. So, I’m focusing on gratitude for this last year and all the things I was able to do.

In the photo above, Daniel and I had cycled to a friend’s place to celebrate his birthday on August 23. We both look happy and healthy and we were.

Over this past year, I have been able to:

• enjoy a full lovely Christmas dinner
• dress up for a New Year’s party in sequins and high heels
• be a volunteer patient and a health mentor
• start up and facilitate a group for people following The Wahls Protocol
• be the team captain for our team at the MS Walk
• exercise regularly twice a week at Hillcrest Community Centre with Healthiest Winner
• enjoy the swimming pool and sauna at Hillcrest
• shop regularly at most of the Vancouver Farmers Markets
• learn to make great kombucha
• make my own dill pickles, kimchi and sauerkraut
• ride my bike in good weather
• entertain some friends with small dinner parties
• enjoy a long weekend at Saturna at our friends’ beautiful cabin
• have enough energy to get involved in politics again
• re-connect with some of my political heroes who are now in the federal cabinet
• start working again on a new business venture with a new business partner
• engage in some speaking projects as well as some media for trigeminal neuralgia
• teach second year medical students in Portland, Oregon, about my experiences
• meet Dr. Terry Wahls at the Canadian Neurovascular Health Society conference
• get really involved in the local campaign to elect our Member of Parliament
• enjoy the feeling of knowing the Minister of Justice, who is our MP
• be so completely pain-free I almost forgot about the multiple sclerosis

I have a lot to be grateful for. And, of course, the most important person in my life is my dear husband, Daniel. He has been with me every step of the way. He is an exceptional human being. He is my love.

On the night of October 19, Jody Wilson-Raybould was elected in our new federal riding of Vancouver Granville. As tomorrow is the day that the new cabinet will be sworn in, I wanted to post this before the announcement. Most media reports are suggesting that she will be appointed by Trudeau to cabinet. Over the course of the past 15 months we’ve had many chances to spend time with her.

I was given some special honours during her campaign. I was asked to say a few words of welcome at her campaign office opening. And she asked me if I would be willing to write an endorsement for her. I did with great pleasure. It was astonishing for me to see who else had been asked. I was seriously outclassed as there were several prominent citizens there!

She even tweeted my endorsement just before the election.

Last year, after being acclaimed as the Liberal Candidate, Jody had a chance to introduce Trudeau at a rally held at Douglas Park. It was the first political rally I had been to for a long time.

Daniel and I were inspired last winter to go out door knocking for Jody so that we could see Stephane Dion again. We had been delegates for him at the 2006 Montreal convention and it was an amazing experience.

I had the chance to invite Jody to the WAMS (Women Againts MS) event where I spoke on March 31. It was there she learned about how prevalent MS is in Canada. She wanted to join my team for the MS Walk. How could I say no?

Jody is such a down-to-earth, fun-loving person that she is a pleasure to be around. It was so much fun to have her as part of our team, the Wahls Warriors. I realized that she had so much to offer our community and our country.

As the election date drew closer, Daniel and I got more involved. He worked on the sign team and a bit in the office. I did little bits here and there. Jody and her team worked so hard for over a year to get to get to know residents and communicate the Liberal vision.

And on election day, our house was a ‘home centre’ for volunteers where we spent all day getting our vote out. It was go, go, go all day. At 7:00 pm, when the polls closed, I dropped off a couple of volunteers to do the count at a local polling station and heard that a Trudeau victory had been declared. I started to cry.

Daniel and I had a bite to eat, then went to Jody’s small celebration party where we waited for local results. When they finally came in, a photographer for the Vancouver Sun snapped these shots of us.

And one of Jody’s campaign team sent this shot to me.

Ten years ago, we did everything we could to prevent Stephen Harper from becoming Prime Minister. It was an incredibly emotional experience to be part of such a large victory with a majority government, knowing that Harper was gone.

And before we left to go home, we asked our new MP for another photo while we told her how proud we were of her! She ran a clean, honest, and respectful campaign.

Thank you, Jody, for your willingness to step forward and lead.