Lisa's Life Lessons

It is with a heavy heart that I write this final blog for my dear friend Lisa.

In the early morning of Sunday August 5th, my mind raced as I sped down the highway back towards the Hospice unit where Lisa had been admitted the previous evening. As I made my way around the bend, I was instantly struck by the glorious sunrise I had the privilege to witness. The sun was a deep, vibrant, blood-orange colour that literally took my breath away. It was massive, captivating, and more magnificent than I could ever try to describe. It was the kind of sunrise that even the grumpiest and most crotchety person would have had to admit to being spectacular. The Universe was preparing itself for a very special day indeed. For in the late afternoon of August 5th, with the sun beaming in a virtually cloudless blue sky, our loving Lisa would take her last breath.

In these final years of Lisa's life, ALS deteriorated her body, but not for a second did she let it chip away at her spirit or soul. Lisa never stopped being exactly who she was. She would have understandably had every right to feel angry, depressed, and hopeless with her diagnosis; but those words do not describe Lisa in any way, shape, or form. Lisa was and will always be a bright ray of light, hope, and optimism. She was one of the kindest, most loving, giving, and thoughtful human beings I have had the honour of knowing. To say that she will be missed by many is an understatement that does no justice to the place in our hearts where she will always reside.

This past spring we spent some time going through common "meaning of life" type questions I compiled from the Internet (originality score=0), nevertheless, here are Lisa's thoughts on the matter in no particular order:

1) What is the most beautiful place you've ever been to?
The island where I was born, Vancouver Island.

2) What is an accomplishment you are most proud of?
My marriage and children.

3) If your body could talk, what would it say?
What the hell is this?? C'mon, the one time my brain takes charge and this is what you come up with? Damn.

4) Do you have any lessons for best approaching love and relationships when you're single?
Present your true self. Always. Don't act like something you're not to conform to what you think they will like.

5) What are your greatest talents or skills?
I love baking and embroidering. And I love making connections with children.

6) What does unconditional love look like to you?
Loving no matter what. Your heart could be crying but you never turn your back on those you love. And saying love you even when you hardly like the person.

7) What small act of kindness were you once shown that you will never forget?
The Gala. Though it was no small act. It touched all of us.

8) Does it really matter what others think about you?
Not at all. If someone is not going to be true with me then I am not interested in sharing my time with them.

9) Name 10 things that make you smile:
Dolce. My kids. Coffee. Birds singing. Hearing kids play. Seeing my nieces. My friends. My family. A good joke. People watching.

10) What advice would you give to young adults who are choosing a career path?
Take time to explore all types of jobs. You don't know what you like unless you're exposed to it.

11) Were there turning points in your life that changed it's course and sent you in a different direction? 
Mom moved us to Lethbridge when I was 17 years old. I had to suck it up for 2 years. And getting married changed things.

12) Have you learnt lessons about how to stay healthy?
Find something you love to do and you will stick with it.
Make great friends along the way.
Marijuana is a natural plant that should not be feared but rather enjoyed.

13) What's one thing you have said more than you have done?
I need to get those Christmas stockings done. I never did. They were for my kids.

14) "I couldn't imagine my life without...."
Dolce.

15) What advice might you give others about getting and staying married? 
Ensure you have strong, honest, communication. Share the good, bad, and ugly. Opening yourself up, sharing your most vulnerable self will create an intimacy that will bond you together.

16) What advice would you have given yourself on the day you were married?
Relax! Enjoy every moment and don't stress about the details.

17) What inspires you?
Good people. Music. A good show or movie. Anything really, a nice sunny day.

18) What do you think about when you think about death?
Oh what a relief! I think about having a healthy body back. As soon as I get to the other side I'm googling Jazzercise classes and signing up. But I feel sad because I want to be a mom for my kids. I want to be a Grandma. I want to be there when they need me, however, I'm also excited to see everyone I love and have been missing on the other side.

19) Advice on finding fulfilling work?
Volunteer at different jobs. If you try new things, you might be surprised by what fills your bucket.

20) Has parenthood changed you in any unexpected ways?
My heart overflows with love for my kids. Being a Mom is my greatest gift. I actually never thought I'd be lucky enough to be a mom.

21) What is something minor or seemingly insignificant in your life that actually contributes greatly to your happiness?
Music. Coffee. It used to be reading, but I can't turn the pages anymore; now it's Netflix (laughs).

22) What are your fears and worries for your children's generation?
I'm not a worrier, I don't have any.
(I force her to answer the question.)
That technology will shut down the daily human interaction that can bring so much joy.

23) What advice might you give others about raising children? 
Just love them. And then love them some more. Stick to your guns. We can love them without being their friends.

24) "I feel happiest in my skin when..."
Without ALS I'm very comfortable in my skin; with ALS, I'd have to say after my shower.

25) What advice would you give those currently 10 years younger than you about how to make the best use of this decade?
Start exercising for your own mental and physical health. Go to marriage counselling if your marriage is at a stand still. Spend lots of quality time with your kids, cause ten years from now they will be off doing their own thing.

26) What has been the most challenging part of your life?
ALS aside, my marriage. After all, men are from Mars and women are from Venus. It's given me a lot of civility. Dino is a wonderful man. There has been so many wonderful times. I mean we have been together for 23 years!

27) What are the 3 most important things to you?
My family, my friends, and Dolce.

28) How is the public you different from the private you?
I can be quiet at home. Before ALS I could grab a book, a cup of tea and read for hours. The public me is slightly more censored. (We both laugh).

29) If you could talk to your teenage self, what would you say?
You are so much more than what you look like. Do what makes your heart sing. If you do you will go far and you will feel fulfilled. You are lovable.

30) What are the major values/principles you live by?
If you love someone, tell them. Share what you feel about others, don't assume they know. Resolve any conflicts-anything can be sorted through if you truly care about making things better. Let your kids know that you're not perfect but you should always try to be better.

31) What is a great regret of your life?
I really don't have regrets. I have made peace and amends along the way.

32) Who has had the greatest impact on your life?
My mom.

33) What qualities or traits do you most admire in others?
People who can set boundaries and don't feel guilty about it. I always had a hard time saying no.

34) What are a few favourite family memories?
Family dinners at my in-laws. Family picnics at Mt.Doug park with my side of the family. Our annual summer Whistler trip when we stayed at Chateau Whistler and went bike riding and swimming.

35) What is your greatest flaw?

Not being as kind to myself as I am to others. 

36) What always brings a tear to your eyes?
Looking at pictures of my kids when they were little. 

37) What's the one thing you'd like others to remember about you?
That I was a good mother and a good friend.

38) What do you love about life?
Everything. If we look at what comes our way as a "I can handle this" instead of "why me" it becomes a challenge we can feel good about when we're accomplishing it. No matter or regardless of the outcome.

39) In 10 words, describe yourself. 
I'm maternal, devoted, grateful, curious, sociable, loving, happy, excited, humbled.

And there you have it. As much as my OCD tendencies begged her to do an even 40 questions she refused to. She said she wanted the number to reflect her age...

Lisa was truly the funniest woman I had ever met. Her remarkable quick wit and playful sense of humour kept me on my toes and we shared more laughs than imaginable.

I thank you all for taking the time to read this. I thank you for loving her, for caring about her, for merely thinking about her. Our collective energy of Lisa love is something I know she felt and continues to feel.

Lisa touched the lives of so many people and we invite those who were close to Lisa and her family to please join us at her Celebration of Life. 

When:   August 15th, 2018

Where:  Beach House Restaurant

              5109 Cordova Bay Rd

              Victoria, BC

Time:    2-4 pm

Lisa's Request: "Please wear colour, I don't want a funeral."

If you would like to make a donation to the ALS Society of BC on behalf of Lisa you can do so by  clicking here. Thank you to every single person who reached out and helped or supported Lisa and her family in any way. She was always so grateful for the kindness she was shown. Little did she know that it was because of exactly who she was that she was surrounded by so much love.

 

Lights, Camera, Action!

One day I got an unexpected call from Wendy Toyer, the Executive Director of the ALS Society in BC, located in Richmond. For the month of March, Global News was part of an ALS Awareness fundraising campaign. Each Monday morning they profiled someone currently living with the disease. Wendy inquired if I had any interest in being part of this venture. I of course jumped at the chance! I will do anything I can to help those currently living with this disease and anyone who is yet to unfortunately be diagnosed. It was time to get ready for my fifteen minutes of fame. (It turned out to be 2 minutes and 23 seconds, but that's beside the point.) 

So on March 7th a girlfriend and I headed off to the big city for my interview. It had been a while since my last road trip; even though I wasn't going to spend the night anywhere it felt amazing to be on an adventure.

Heading off to the ferries!

Dolce attracted much attention! Which she gobbled up. 

Made it to the Mainland. 

Our chariot for the day. 

In the limelight. 

Time to head back home. 

Who can resist fries on the ferry? Not me. 

My interview aired on March 26th. If you would like to see my clip you can click here.

Although this post missed the March fundraiser, The ALS Society of BC is always accepting donations. Services such as their Equiptment Loan Program have been invaluable to me. It is where I received my power-chair, recliner, and hospital bed to name a few. I am forever grateful for their services and support. If you would like to donate and learn more about the ALS society, click here.

Keep On Keepin' On

If living with ALS was a bus ride, I would say that the trip has turned bumpy and unpleasant. I’m feeling motion sick much of the time and when I look down the road I can see that it’s not going to improve. If anything, what lies ahead are steep, rocky, and treacherous road conditions; nothing I’m excited about. There is no remission with ALS, no plateaus, and I’m going down at a pretty steady pace.

In September, I had a peg-tube permanently placed through the skin of my abdomen which now delivers food and medicine directly into my stomach. It’s a soft plastic tube that is now just a part of me. In the mornings I have a liquid breakfast of champions (and no, it’s not mushed up Wheaties), it’s the equivalent of drinking Boost. For the rest of the day I still eat food but it can be a tiring process. With reduced mobility in my only working arm (the last of my limbs),  and the muscles in and around my mouth and throat having weakened, I can only describing eating in one word-arduous.

It’s been several months now since I’ve walked; I’ve been getting around slowly in my power chair. Thankfully in October we purchased a wheelchair accessible van and it has been worth its weight in gold! Trying to plan far enough in advance and arranging Handi-dart was limiting my independence a great deal. Having said that, I was very appreciative of their services when I was using it. October also marked the installation of a free standing lift in my bedroom. Dino can still transfer me but my homecare workers and everyone else use the lift.

I receive homecare services 7 days a week in the mornings. I have mostly regular workers coming and honestly I couldn’t have chosen better people myself. I am so grateful to have them. Afternoons consist of outings and appointments, or leisurely days at home. I don’t venture out much on my own anymore as I can’t trust that my left hand will cooperate with me. There is an option for my chair to be moved manually by someone else, but I am keeping my independence as long as I possibly can. I already need assistance with almost everything, being able to choose where I go and when provides me with at least some say in my world.  If you’re thinking to yourself that what I am describing must really suck, I’m here to tell you…it does.

Visits with friends and family are lightly sprinkled throughout my calendar which always brings me much joy. Having said that, and being as social as I am, I’m finding that visits are best kept short and sweet. Drop in visits have become too much for me now as I have such limited energy in my day. Not long ago I was able to push through but I just can’t muster the strength anymore. When my body or mouth is done, it’s done.

Talking has also become quite a tiring process. The best way to describe it would be that the back of my throat and tongue feel frozen. There is a thickness to my speech now. Properly articulating words is exhausting and difficult. I have to repeat myself more than I would like and to say that it’s frustrating is such an understatement. It’s like trying to catch a twenty dollar bill you dropped on a windy day. At some point, you just say to yourself, F#*k it, this isn’t worth my time. So even though I want to say something, I just stay quiet.

We now have Google Home set up and I recently received an eye-operated communication device. I am able to generate speech by creating words or utilizing pre-programmed phrases. The camera is calibrated to my eye and I look at letters or phrases and then they appear on my screen. When I am done I can send the message (i.e. texts) or have the system speak. It will definitely take some getting used to as it tires my eyes and dries them out. But when I am no longer able to speak I will still have a way to tell Dino and the kids to take Dolce out to pee! Once a wife and mother, always a wife and mother. Haha.

Speaking of which, my loving mother Faye still comes every week to clean the house and do the laundry. Her assistance and support continues to be invaluable. Meals continue to be dropped off by friends and family and each and every one of them are greatly appreciated.

When I start to think about all the things I’ve been forced to let go of as a result of this disease, it astounds me. Things that used to consume me at times seem completely meaningless now. I had self-awareness before and tried not to sweat the small things, but let’s face it, we all sweat some of them. I think I am in self-preservation mode. I have no control anymore and I believe my mind is protecting me in a way from outside stressors that I just couldn’t tolerate. I am exposed, vulnerable, and in need of help; day in and day out. To think about worrying if my mascara was smudged or not is now humorous to me. I haven’t worn make up in so long I’ve forgotten what it feels like to care about it. And I feel this way about SO many things. In some ways, it’s quite liberating. Perhaps a silver lining? (I just caught myself chuckling).

As bleak as some of this seems, or is, I still find joy in my life. Pure, blissful joy. Sometimes it’s when I cry from laughing so hard, sharing moments with friends and family, snuggling with Dolce, taking my first sip of coffee (mmm..), or appreciating the beauty of nature and everything in between. Joy is still very much a part of my life. Each and every day I actively try to choose happiness. It’s not always an easy task, in fact sometimes it’s downright excruciating, but I believe it is a choice. I am told by many that they admire my positivity, that I have shown grace throughout the stages of this horrible disease, and that I always seem to have a smile on my face. I can humbly accept these compliments but it doesn’t mean that the darkness doesn’t creep in at times. I know the road is not long and it can still be hard for me to accept. If I knew then where the bus was headed, I would have taken the train instead. But here I am. This is my life. Might as well enjoy the ride for as long as I can.