“When,” asked my doctor as I walked toward her in the clinic’s shiny hall, “did your left arm stop swinging?”
“It’s not moving? Maybe I’ve had a stroke…” I laughed at my joke.
She, however, did not.
I had made this mid-May appointment for several reasons.
I’d recently sprained my right ankle. A year ago it had been my left ankle, twisted over on perfectly flat pavement. It too, had been deep blue and swollen.
Also walking was getting harder and harder. My left hip and muscles would get tighter and tighter and no amount of ibuprofen and Tylenol would help. I hadn’t been able to complete our April walking trip in Spain.
I was walking slower and slower and couldn’t speed up no matter how much I willed it. Did I mention my calf muscles were permanently tight and could not be stretched out of their rigidity? Overall I just felt so painful and stiff. It was the worst after sitting, I found it harder and harder to start moving again.
My right shoulder was screaming every time I made a wrong move and it turned out there was many different and varied ways to make a wrong move.
Also, my massage therapist had asked me when I developed the tremor in my left hand. “Tremor?” said I. “That just happens now and again. It’s nothing.” She asked me when my next doctor appointment was and, since I was going soon, to please mention the tremor. She repeated her advice several times.
And the weirdest thing was that I felt like I’d forgotten how to use a fork…for the last year, I’d been surreptitiously watching people eat and trying to understand why I couldn’t remember how to use my fork properly. It just felt inexplicably wrong and for the life of me I no longer knew how I’d done it before.
Finally, after my doctor had done all the tapping, poking and a weird little finger test, she looked at me…”I’m sorry,” she said, “but I think you have Parkinson’s.”
I laughed, “But I’m the one with the genetic marker for pancreatic cancer, so hey, this is good news compared to that, right?”
That Colleen…what a kidder. Ha fucking ha.
She left me with one more question, “Has your writing gotten smaller?”
“What? Nope.”
“Go home,” she said, “and look up Parkinson’s symptoms and see if you find any matches with what’s going on for you.’
Kevin and I spent the next hours and subsequent days on Parkinson’s sites. But first, I pulled out my journals from a couple years before and looked in fascination at how much smaller and tighter my current cursive was compared to the older journals. How had I not noticed?
It was quite apparent, by the time we’d looked at enough medical sites, that there was no doubting the diagnosis. If this was an exam, I had ticked all the boxes for a score of 100%.
It sank in. It wasn’t funny. In fact, I was terrified.
I am writing this while stretched out on our deck’s outdoor sofa. Soon, my alarm will chime, a melodic ringtone that reminds me at 7 am, noon and 6 pm that I must take two more levodopa-carbidopa tablets prescribed by the neurologist who confirmed my doctor’s diagnosis.
I am no longer the woman who proudly answered any questions about medications with, “Nope. I only take vitamins.”
Oh my. I was always so smugly pleased with my answer.
What a difference a day makes eh? Now I carry around a week’s worth of 42 pills ensuring that I never miss a dose. I refill my pill holder from a prescription that comes in a tumbler-sized bottle.
I feel the need to address that former smug version of myself and say, “See?!”
But see what exactly?
I guess it’s this: Yes, we can do our best, drink all the water, eat the piles of veggies, do our exercises, eat our vitamins…but there are other forces at work…like ticking genetic surprises that reveal themselves slowly with mysteriously random symptoms that appear unrelated, until finally, taken as a whole, they reveal an incurable neurodegenerative disease.
Just like that, I am no longer the woman who needs no medications.
So here we are.
Or more correctly, here I am.
The days now are filled with strategies to cope, to counter, to manage. There are days when the fatigue leaves me washed up on the island of our bed. But then, like so many others who are living with their own health battles, it changes and morphs and I find I can move again and the pills do their work and I meditate and I paint.
I work on a collage. I meet up with a friend. I go on short walks. I swim. I laugh. And (who am I kidding?) often, I cry.
But every day I remind myself to remain present. Do not think about the future. That is unknown and not to be imagined. It is definitely best not to go there.
Be. Here. Now. The lesson I’ve been trying to learn all my life has been fast-tracked and has taken on a new imperative.
Here’s what I know. Each morning, Baxter, sighing his puppy-dog sighs, curls his back into my leg.
I write in my journal in my once-again large looping cursive (thank you meds) and Kevin hands me a perfect cinnamon-dusted cappuccino and I know that, right here, right now, I am so lucky.
I am so grateful and I am so damned happy to be alive.
Carpe diem darlings. It’s all we’ve got.
My dear Colleen… you are in my thoughts so often and yet we haven’t seen each other in a while. I’m so sorry to read this post and yet, I know that you are the most courageous and loving human being with the biggest heart. I do hope that we can get together soon. So much to catch up on. Sending you hugs and love.
Thanks Janyce. I know we haven’t seen each other in awhile, but I love how we can just pick up like no time has passed. We will do that soon. Hugs back 🙂
Oh, Colleen, I’m so sorry. You have my best wishes for good meds, slow progression, and many adventurous years to come. Hugs!
Thanks for your three-part wishes Sharry. Here’s hoping it works.
I’ve tried to teach my kids ( which I wouldn’t have if I hadn’t met you ) that when bad shit happens , to say fuck , and look at what opportunities the shit presents .
You have always seemed to me to be representative of that trait .
So …… fuck !
I am so grateful to have you in my life . You are a true friend .
I wish you hope and opportunity.
PS
Kevin is a great dude as well .
Thanks Terry,
It’s lovely to know that I imparted such great wisdom 😆
I am hopeful, and yes, I think one of the opportunities this diagnosis presents is to not waste any time. My goal is to carpe the hell out of every encounter.
PS Kevin thinks you’re cool too.
Oh Colleen this is not the news I ever imagined to hear. I’m shocked, saddened and raging against the universe to learn that what seemed to be a sore muscle in Spain turned out to be so much more. I pray that the miracle drugs, a lifetime of exercise, vitamins and fresh air combined with your strong, creative spirit will work their magic and keep this terrible disease at bay. You’re an inimitable force and much loved.
Thanks Michele. I’m hopeful too, that moving as much as possible and laughing whenever I can, is part of the recipe to counter this. So far the pills have made a huge difference and for that I am so grateful. I also know that having friendships like yours is the best medicine of all. ❤️
If laughter is the best recipe, anyone who can laugh as hard as you did — in a taxi full of earwigs in the middle of cartel-country Mexico — will have this beat.
Haha! That was definitely one of the craziest taxi rides. Here’s hoping laughter really is the best medicine.
Dear Colleen
I feel so sad and shocked to hear this news, but thank you for sharing it.
That can’t have been easy…
I hope the good days will far outnumber the not so good days and
I know this will not dim your light.
You’re pretty darn bright and shiny!!
Thinking of you,
Lynn XO
Lynn. Your bright and shiny message made me smile. And that, my friend, is good medicine. Thank you.
Colleen, thank you for sharing your news. I am so sorry you are going through this struggle.
Reading all these messages I can see you have a loving community around you and that’s wonderful.
You have always struck me as fearless – and such a creative soul.
Keep writing , keep sharing your stories. They help more people than you may know. Hugs and love, Anne
Anne. Thank you for your encouraging words. I am feeling incredibly grateful for all the amazing friends in my life. I feel held up in a wonderful web of connections.
Be here now! Isn’t that what we’re all trying to learn? And it comes in all forms — Parkinson’s, pancreatic or any other type of cancer, plain old aging, moving miles away to start a new life. Thank you so much for sharing your thoughts, feelings, reality in this blog. I hope you keep on writing your story of this time. Your words are powerful. And I’m glad we have better and better drugs to deal with this P disease. Seize the day, darling, like you do. Grieve, and then let joy find you in the morning alongside Kevin and Baxter and your rich vibrant life.
Oh Bern. Thank you so much for your perspective. I definitely did some grieving and am probably not done yet, but overall, I feel like I have found a way to be with this new world I’ve come to inhabit. My plan is to keep writing. The impulse was gone for so long…but it seems it was just hibernating for awhile. We’ll see how it goes. Sending big hugs…
You are in my thoughts and in my heart. ❤️
Thanks Dee Dee.
Colleen, thank you for sharing your news publicly. That takes courage. But that’s who you are! And wow, the community of responses around you my friend. You are surrounded by support. Definitely an asset when overcoming, managing, adapting one’s life. We’re here for you. This journey that takes us many places. Chosen, or otherwise. 🦋
Thanks Deb.
I’m a bit stunned by all the responses actually. It all feels a bit surreal. Every comment has me envisioning the person and that brings up a million memories and moments and wow! It’s like bellying up to an all-you-can-eat buffet of love and support.
I am so grateful.
I loved your last sentences. I’m aware that you know this better than most. ❤️
This journey that takes us many places. Chosen, or otherwise.
Dear Colleen,
I’ve been waiting for this one. 😢
Your plain truth is such a gift to us all as we navigate new realities .
Blessings to you in restoring your balance as you learn how to replace the scary bits with the whole truth of who you are. 😘
Thank you Carol.
You’re so right. We are, all of us, constantly navigating new realities and somehow we must find a way to incorporate these new parts of ourselves into a new whole.
What I had to do first was grieve the death of who I have been or how I thought of myself. That part was/is hard but necessary.
But hey! Check out the butterfly-it actually completely disintegrates into a mess of goo before it emerges from that cocoon.
Noooooo! Say it isn’t so my dear cousin. I always enjoy your blog and read it as soon as I see it, but this time I put it off. Why? WTF – at least it’s not cancer, but it’s not good either! Shit happens to the best of us … and you’re the best!
I love your infectious laugh! When Kevin posted a cartoon of Ma Kettle saying that Vance fella didn’t have his cornbread quite cooked in the middle, I cracked up and was reminded of your snort.
At 80, I can tell you that getting old isn’t golden. I’m on meds for hip, back and shoulder pain. When I was younger I thought I’d jump off Lion’s Gate Bridge if I was ever crippled like my mother. Well, that’s just plain stupid. Who wants to be remembered for causing a horrendous traffic jam in this heat?
For the past 3 years I’ve been selling my seeds, seedlings, plants and veggies for fundraisers. First, it was the Fraser Valley flood victims and then Ukrainian children and displaced people in Ukraine. Maybe, I thought, Karma would be kind. Last month, 2 men asked if they could have a few dozen of my gorgeous poppy seed pods because they were very important in their “Indian culture.” When I explained that I used them for my Ukrainian fundraiser, they left, but came back to steal 130 seed pods that night. I hope the Karma bus rolls over those Assholes.
Yes, Parkinson’s sounds awful, but you’ve got more strength in that little finger, more intellect and more good humour to get you through whatever comes your way. Carpe diem. You can do this! You’re an inspiration. Sending good vibes and all my love, dear cousin
Ah Martha. I wish I could say it isn’t so…but you’re right, shit happens. Speaking of which, I hope the meds help with all those painful parts. I am certainly grateful for the pharmaceuticals that are helping me.
You made me laugh with your solid reasoning as to why you wouldn’t jump off the Lion’s Gate. Thanks for that!
I love that you’re fundraising for such good causes and I’m pretty sure the big yellow Karma bus will find those jerks. Just keep putting the good into the world and hope those thieves suffer from a nasty rash or two.
Thanks for all the love and good vibes cousin. Take care.
Colleen, I have always thought of you as someone who is more than unique, more than simply artistically talented and very much an energetic intellectual. Your diagnosis of Parkinson’s disease saddens me but doesn’t change who you are nor my affection for you. While the physical road ahead may not get any easier and perhaps be unfortunately filled with emotional potholes, I know you are that person who digs deeply and will yell from the rooftops, “FUCK PARKINSON’S”!
You have touched many hearts with your unabashed exposure of your feelings and that my friend, takes guts. Huge hugs and respect to you.
Oh bless you Ed. I think we formed a mutual admiration society right when we first met.
I so appreciate your kind words and yes, perhaps a T-shirt is in order with an all-caps font that reads, FUCK PARKINSON’S! It has a certain j’en sais quoi, non?
Other forces at work indeed…but also balancing forces like hope, and faith, and creativity and friendship. Thank you for sharing your journey in this beautiful blog.
Great point Sue. Hope, Faith, Friendship & Creativity are the forces I will be focusing on.
Wow! Hidden and humbling health issues rise up unexpectedly and surprise us into counting the miracles in each day. It happens to those around us and yet we don’t expect it to happen to US!
I would have said you are an icon of being present and seizing the day, so your renewed approach to those mindsets must be truly exemplary.
Thanks for sharing, Colleen and Remain Awesome!
Isn’t it crazy? We never know what’s going on. I’ve always marvelled at the ways in which our bodies (almost) always function. There are so many moving and invisible parts and so much that can go wrong but mostly doesn’t.
So beautifully written my dear friend. Heartbreak, joy, hope, gratitude, honesty and humour…your words will heal others as well.
Thank you Irene. Mostly I am grateful for the amazing friends (like you) in my life.
Colleen, I am so sorry for your health issues. Thank you for writing so beautifully about a moment that changes our life, plus the before and after, the after shocks.
What a reminder that with it all we are still living in a human body, eh?
I wish you the continued ability to Live Here Now, to keep writing and painting. And, if at all possible, continuing sharing your journey. 💖
Thank you Zahava. I am so grateful that we met all those years ago. What a wonderful experience it was to connect with you.
Who knows? Maybe there will be a Mexican reunion. I would love that.
Oh Colleen… Onto your next adventure, although one not of your choosing. Thank you for your brave words and feisty spirit – you’re an inspiration, as always. Looking forward to a deep catch up next time I’m in town. Sending so much love. 💕
Blessings Lori. Yes, if this was a Choose Your Own Adventure book, I think I’d pick something else. But apparently, we don’t get to choose the adventure but only our response. And even then, the emotion of grief in particular, doesn’t always feel like a chosen response but more like a tidal wave that slams us into the rocks.
BUT, in between those big waves are wonderful moments of being carried by an ocean. I really feel like love/friendship is that ocean. I look forward to your next visit.
Yes, reading the beautiful responses you’ve gotten from this post, it looks like your ocean is vast and supportive. Reach out anytime if you need a reminder or a little help catching your next wave. 💞 (I can’t guarantee success but we can laugh like hell trying!)
Deal! I’m always up for ‘laugh like hell’ moment.
I’m lost for words, my friend 😟 Your zest for life and “get er done “ attitude will carry you through this journey as well. Sometimes the unfairness of life is overwhelming, but as you do very well say, it makes us appreciate all the good and positive things we take for granted. A beautifully written Post, but also heavy on my heart. You go, girl… we’re all with ya❣️❣️
Thank you Sophie. Today is a particularly good day and maybe it’s because I am reading so many wonderful messages like yours. I love all our shared history and knowing that we could sit down after all these years and have another great conversation with tons of laughter. I’m so glad we made that trip to see you. I just read something by Tove Jansson the other day and thought of you 🙂
Damn, Colleen! I am so sorry to read this. As my kids say, “that sucks”.
I admire your strength and your writing. I wish you all the best as you move forward.
Your kids are right…it totally sucks. And, it has reconnected me with so many friends, both old and new and that cannot be discounted. Thanks for connecting.
Sending you all my good health vibes while you navigate this chapter, Colleen. Thank you for sharing this xo
Thanks Chantel. I’ll take any health vibes you can throw my way. Onward. Ever onward.
Oh Colleen! Thank you for giving us a little glimpse into your life right now. Our load might get lighter when we share it. You have a wonderful supportive community that you have cultivated by your generosity of spirit and even though some of us are far away we hold you. And of course your beautiful partner. I love your attitude toward it all. Maintaining your sense of humor cannot be easy but if anyone can do that it’s you! I send you warm hugs and hope to see you when you are out this way.
Thank you Donna. I was back and forth about ‘talking’ about this. Initially it was all too overwhelming but the initial tsunami of emotions has quieted and I felt like writing would somehow give me back my narrative. I know that, especially as we get older, everyone is navigating unknown waters. It is so much easier when it’s in shared company. Take care.
As always, you blow me away with your writing. One day at a time and less rushed and more present. Not all bad. Sometimes we need to fight for the joy. Looking forward to many more adventures, my friend!
Blessings doll. We shall have many more adventures. Guaranteed. One Day At A Time is definitely the ticket.
Colleen my friend, I did not expect to read this here. Hugs to you. God bless Baxter. ❤️
Thanks AnneLise. Hugs back at you. Baxter is my therapist 🙂
I love your writing so much; I always have and always will. I’m sorry, dear friend this is happening. I find it remarkable when someone can tell us something that comes as a relief and then a trauma. And we still manage to find joy. I’m so glad we will continue writing, laughing and crying. I treasure your laugh and your friendship. Here’s to the next bike trip XOX
Thanks Karen. I’m sorry this is happening too. I am learning acceptance for what ‘is’ but not so accepting that I give up. It’s a weird place but friends make it so much better. Big hugs…
We have met more than a few times in both large and small gatherings, and every time I am left with wanting to know you more. Your laugh is infectious, your wit is razor sharp, and your self expression is astounding. In the words of Dr. Seuss…Today you are You, that is truer than true. There is no one alive who is Youer than You.”
Sending big hugs and belly rubs to you, Kevin and Baxter! See you at the pool!! 🥰
Hahaha! Thanks for the belly rubs, the super-kind words and a Dr. Seuss quote for the win!
Hello Colleen, I’m so surprised to hear this today. Sending you a big hug. 🤗 We just never know what’s around the corner! I’m happy to hear you’ve been diagnosed and have the meds you need and moving forward one day at a time. That’s all we can do is Be Present. I was very present for my mom every day of her last 4 months since pancreatic cancer found in January. Now I can Be present for Me. I hope to see you soon and give you a real hug. ❤️🤗🙏
Thank you Kelly. We just don’t know what’s around the corner. I’m glad you’re taking care of yourself and I look forward to a real life hug 🙂
My heart goes out to you… I understand this condition as my mother had it… there will be changes but hoping you will go on doing what brings you joy for many years ! There are daily new medicines that will keep you going 🙏
Thanks Jill. I remain hopeful that there will be new discoveries and meanwhile, I am so grateful for the medicine that I have. It’s made a big difference.
As always, beautifully written. I just don’t enjoy the subject like I usually do. Like someone else said, I am thankful we “sort of” met and we will all walk this journey with you. ❤️
One day you and I will actually meet IRL. It has to happen. Until then, thank you for being part of my life in other ways. Take care.
Thank you so much for sharing this very personal news Colleen and for reminding us all to have gratitude and to be present in each day. Thinking of you 🩵
Thank you Terry Anne. I feel so lucky to know so many people who ‘get it’.
So sorry to hear about your diagnosis 💔Nothing can ever diminish the outlook you have honed + possess as evidenced by both your article and your life 💖 Keep being you! You’re wonderful, delicious, precocious you! Sending love ❤️, light + healing ❤️🩹 Create, create, create it is your antidote 💞
Thank you for all your wonderful words Loretta.
I completely believe in your antidote and fully intend to create as much as possible.
Thank you for sharing this dreadful news with us. In my journey, I’ve learned to just take each day as it comes, make the most I can of it, and be grateful I woke up in the first place. A beautiful song I listen to over and over is No Hard Feelings by the Avett Brothers. It took Seth Avett eight years to write it, and his voice and the lyrics are so soulful. Not exactly your inspiring “get up and go” kind of song, but very soothing and introspective. Peace, my friend.
Tamara, you have demonstrated grace under fire for so many years. I know yours is hard-won wisdom. I will look up this song. Thank you.
Oh Colleen! So sorry, but thanks for the courage emanating from this post.
Dearest Dora. It is interesting that you mention courage, because when I think of that word, I think of you and what you have faced. I am grateful we ‘met’ all those years ago. Who knows, one day it might be a real life encounter 🙂
Well, fuck. And, yes Be Here Now. As you can. As you will. In whatever capacity. Thank you for your honesty and insights.
Thanks Teresa. Life shows itself in so many forms and variations. I’m so glad we had that wonderful visit with you.
This is beautiful and moving and sadness and all that comes with examining ourselves from the inside out. I am thankful we met and will in some small way walk this journey with you❤️
Bless you Zena. I so appreciate this. It’s funny how paths cross and life weaves us into some invisible web.
Not what I expected to read. Yikes. I guess we are all in line for something. Or several somethings. I collect wellness tidbits just in case. My Parkinson’s / Alzheimer’s one is there is a substance in purple Okinawan sweet potatoes that inhibits the tangles that make up these diseases. I cannot remember what it is, and you can buy it synthesized maybe. But any sweet potato has some; the purple ones the most. I don’t know if ube cream has it, but it seems likely that it is contained in the purple essence of it. Wishing you better health outcomes.
Thank you Gail. I just had an iced latte the other day. A girlfriend brought it for me and told me it was sweetened with ube. I’d never heard of ube before and now, here you are. How bizarre. I will definitely look into it.
Brilliant!
Blessings 🥰