Today I’m Reminded…

Today – and most days –, I’m reminded of a woman who I was fortunate to know in my lifetime: She was my Great Aunt M and she was one of the most kind and loving people I’ve ever known. Today is the day she was born and I prefer remembering it than dwelling on the day I witnessed her passing away. Even though I live thousands of miles away from where she once lived, and can’t place yellow flowers on her grave, I pay homage to her memory as often as I can because I learned so much about compassion and unconditional love from her.

She was the kind of person who, although quiet, was strong. Not everyone can survive being put on a ship alone as a young adult and sent thousands of miles away from your family to make your mark in the world. Not everyone would have been able to thrive in a place where they knew no one, but had to prove themselves knowledgeable and capable of saving lives from the very first moment they reported to a new job, but she did. Every person whose life she touched, in even the smallest way, still remembers her. The goodwill of her deeds still lives on in the community where she lived, eventually married, and raised her children.

I’ve been the beneficiary of that goodwill each time I’ve visited her small town and someone has made the connection between who she was and who I am. The pride felt in those moments is overwhelming, and added to the love and respect I already felt for the woman who loved me my whole life. It also made me feel more fortunate that what I know of her came to me, not from her professional life, but from moments that are more intimate. Times where I was fed favourite meals by her, walking with her through the streets of her town on cool summer mornings, sharing cups of tea with her dearest friends after shopping in the local market, or receiving small gifts that always arrived in time for my birthday.

Her memory keeps me positive because every time I think of her I know that somewhere inside me lives the things she taught simply by living her life. I know that I can be strong and survive anything life throws my way. When I am fearful, I know that the courage I need to overcome whatever I’m facing is within me. I know a smile and words of kindness can go a long way to make another person’s day or life better. When I am sad, I have wonderful happy memories in which she lives that I can recall. I know the value of doing good in the world because her work and its legacy live on. Most importantly, I know what it is to be loved unconditionally and what can come of giving love in the same way.

Today I honour the memory of my Great Aunt M and I am grateful I had the opportunity to know her.



Creative Pain Distractions

It’s hard being alone with intense pain late at night, as I was last night and the night before. Then again, pain that never stops is hard to cope with at any time of the day. Last night, and other days and nights, when my pain is particularly bad and sleep eludes me, I try to think of things to do – aside from amputating the offending body part(s) – to distract myself. Unfortunately, depending on the pain’s level of intensity, I’m not always successful at turning my thoughts away. However, I do usually end up creating something interesting to look at.

As the pain level rose in my legs and pelvis the night before last, I didn’t have a plan for what I wanted to create. I started to place random dots on a clean page in my sketchbook with a black Sharpie pen. Then I connected the dots together with short straight lines and they became triangles, but the sight of a page full of small triangles didn’t feel satisfying. That led me to connecting the triangles at their various points creating a sort of web, which still felt incomplete. I looked at the page for a short while then started drawing lines within each triangle transforming them into prisms. With each line I added, I saw multi-pointed stars appearing on the page that made me wish for an opportunity to experience weightlessness among them on the off-chance I might not feel any pain without the pull of gravity…

Drawing lines didn’t help make my pain go away on recent nights, but it distracted me from thinking of it for a short time as I imagined creating a new galaxy of endless stars.


Blogiversary: 2 Years & 200 Posts

I received two unexpected notifications this week from the WordPress staff. I’ve been writing in this space for two years and I’ve written 200 posts. When I started this blog, I did it with the aim of unburdening myself of all the stress and emotional and psychological pain my illness causes me. I needed a space separate from the judgement and input of my family and friends. A space where I could be completely honest about what I am living with, while hoping to connect with other people who could empathize and truly understand what I’m living with. I’ve gotten that and so much more from this small corner of the interwebs that I’ve turned into my own.

This past year I started sharing my writing with some of my friends and family. I did that because they still have a hard time wrapping their heads around what is happening to me and how I cope with this illness every day. I hadn’t shared my writings about my illness with them before because I was anxious about exposing myself and the raw truth of my experiences and emotions; and I worried that I might have to become less candid with what I write. However, the feedback I received from some of them made me realize that I had no reason to fear what they might think.

In fact, my anxiety was unwarranted. The friends and family, with whom I shared my writing, were all incredibly compassionate. Some expressed disbelief that I’ve managed to hold myself together all this time while living with the level of pain I do daily. They couldn’t understand how I manage to maintain such an upbeat outlook even with the many failed procedures and pain medications that often don’t manage my pain as they should. Others just enjoyed reading my writing and were surprised with the level of detail I retain about my experiences and how vividly I convey what is happening to me.

This made me feel closer to them, which was completely unexpected. I never thought it could be possible to appreciate and love them more – let alone feel closer to them. Because of this, when I sit down to write I don’t worry anymore. I don’t feel the need to consider that I might express something that may be upsetting to them because they have made it clear that the support they extend to me and the love they hold for me is not conditional on what I might need to vent. They see this space as an opportunity to tap into the truth I might not fully share otherwise.

Two years into writing this blog and almost four years into living with my illness, I continue to learn about the people in my life and myself. Obviously, I don’t know what to expect in the coming year. My hope is to continue with the same determination to cope with my illness and to share what I’m living through with others who might connect with something I post. Writing has always been an important part of my life and even though I started this blog on a whim, it’s become an invaluable tool to help me – and now people I’m close to – cope with and better understand my life.

Blogiversary Bouquet


Surgical Scar Struggles

I started writing this post in early September of last fall, after taking a long look at the 11-centimeter (just over four inches) surgical scar that starts at the bottom of my belly button and makes its way down my lower abdomen on to my pelvis. When I started writing it, I was feeling optimistic because it was starting to shrink and fade, but my mood shifted as I started to think about it being a lifelong reminder of what I continue to live through. I forgot that I had started writing it until recently when I read a post on Nursing Notions site titled ‘Not Yet Defeated’ about her experience with surgery and healing.

As I wrote last September, it hit me that my scar is more than a thick, raised, itchy, line in my skin that will never completely disappear. It is a constant reminder of so much. This vertical line is evidence of the most significant attempt to resolve the suspected cause of my chronic abdominal pain and the pain that grew from it and now radiates down my legs, out into my hips, and up my back. It is a reminder that a surgical team led by one of the most skilled surgeons in my city sliced through layers of my skin, fat and muscle that protected my abdominal organs to explore the space cradled by my pelvic bones to find the growth that shouldn’t have been there and remove it. My fading surgical scar will always remind me that although the surgery wasn’t as invasive as expected and the growth was cut out, it failed to get rid of my pain.

That may be the worst thing about having to look at my scar each time I undress or every time I touch it to scratch the itch: I remember the failure. The itch tells me the scar is healing, still shrinking, while my pain remains the same. Eighteen months after my surgery, regardless of how liberally I massage rich moisturizers into my skin, the itch won’t go away. Before the creation of my scar, I had already been through so much. Now, while it sits so prominently on my lower abdomen, I continue to live with the pain and more failed treatments. I thought that was more than enough. That was until I started planning a trip where I’ll have a chance to submerge my body in saltwater then allow myself to float to the surface towards warm rays of sunshine. Then, for a moment, I felt something unexpected…

Apart from my doctors, some family members, and a few close friends, I’ve taken comfort in not having to show my scar to anyone. The thought of having anyone stare at my scar is unsettling, and I’m not ready to have it become a conversation piece. When I pulled out my swimsuit bottoms recently I unexpectedly felt overwhelmed with self-consciousness. I’m no exhibitionist but I’ve always worn fairly conservative two-piece swimsuits because a one piece/maillot reminds me of high school gym classes. This means that to enjoy the water the way I’m looking forward to I need new swimwear because everything I own puts my once scar-free abdomen on display.

After anxiously searching online for hours, I finally found bottoms that cover my abdomen all the way up to my belly button completely hiding my scar. I know that in the grand scheme of all I’m living with this probably sounds vain and superficial, and it shouldn’t be a big deal. However, it’s a big deal to me because it’s another thing, more change, for me to adjust to. My life changed the day my pain started, it changed after each inconclusive test and invasive procedure to get to a diagnosis, it changed again with the first slice of the scalpel into my flesh and each stitch to close me up, and it continues to change with each failed treatment and every handful of pain medications I swallow daily.

My scar will always be with me as a symbol of what I have to live with because of my illness. My frustration is not knowing when or how deeply, coming into awareness of more changes will affect me in the future. However, I must believe I can find ways to live with it all: this time it’s in the form of spandex and nylon swimsuit bottoms. And I’ll do whatever I can to adjust to the next change when it arrives.

New Swimsuit Bottoms

Happy Day

In recent years, the holiday season has been a difficult time for me. Whether it’s been due to daily physical pain, multiple visits to the hospital emergency room to get medical help to cope with my pain flare-ups, missing holiday events with friends, or not being able to attend family dinners; the past few years have been hard.

However, this year, regardless of where I end up, I’ve decided that I’m going to have a happy day. It won’t matter if the only way I can connect with my friends and family is virtually through text messages, phone calls, and video chats from my bed or a bed in the emergency room. If I can’t make it to dinner because my pain is too overwhelming, I won’t feel conflicted or guilty because I decide to stay home and give my body the rest it needs. If I decide to go to my family’s dinner today and feel sore and exhausted after the drive there, I will give myself permission to find a quiet place to rest and recharge.

Whatever the day brings, the important thing for me is to do what I need to take care of myself. That is my gift to myself today: a day free of pressure, anxiety, and self-doubt. I hope that everyone living with a chronic illness has the freedom to make their own choices today – and every day – so they don’t have unnecessary stress and anxiety piled on top of lives that are already a struggle.

I hope that just as I am determined to, that everyone will have a happy day today.


Happy Day



Sometimes I feel as if I’m floating through my life without any control or a meaningful destination or goal. I haven’t always felt this way, of course, but because I am housebound most days and time passes in the blink of an eye and I can’t point to what I’ve accomplished in recent months – years actually – it’s hard not to feel adrift. It’s difficult not to feel rudderless and without direction, as I pass from one painful hour to the next. Even when I do things to feel busy, to occupy all the passing hours, it’s hard not to compare this current life to the life I knew before; and, I wonder when I’ll stop the comparison and just accept things as they are and just be.

I know from experience floating in blue-green waters of oceans and seas, that there is nothing wrong with spending time, days even, letting my body float and drift. However, those days were numbered, planned, and chosen specifically for me to do nothing else. Those were days that I earned and payed for with hours upon hours of work. They were handfuls of isolated days within a year or more. When I could leave behind the demands on my time as I disconnected from the world and plunged into the peaceful sound of warm waves kissing beaches of powdery sand or sometimes pebbly shores of stones worn smooth by the never-ceasing waves.

It feels different, doing nothing now. As if, I have not earned this time. This time my body didn’t plan or ask for. This time that blurs one day into the next. Now, as I float over different waves, waves that are not peaceful, warm, or calm. Waves that batter my body, instead of keeping me buoyed under cloudless bright skies. I feel as though I need to do something every day to earn this time; and each day that passes without me producing or completing something makes me feel indebted to some thing in the universe that I can’t see, but I can feel hovering over me. A thing waiting for payment as my pain-filled body is carried farther adrift.

I know these feelings aren’t truthful. I know these thoughts surface because I still haven’t, after all this time, fully come to terms with the reality that doing nothing most days is okay because it’s all I can do. I know that if a friend or family member was living through this illness and having these thoughts and feelings, I would tell them they were being too hard on themselves. Yet, when the challenge is our own, it’s hard to show ourselves the same compassion we would extend to another. It’s easy to know the truth but it’s harder to accept it and live accordingly.

It amazes me how difficult it is to feel comfortable doing nothing, especially when we know it’s the best thing for our bodies. I don’t know when I will accept it. When I will truly believe there is nothing wrong with doing nothing because my body needs rest or it is racked with too much pain. However, in the meantime, I feel that imagining the sensation of my body floating on waves, free and weightless, may not be a bad image to hold on to when I think of myself adrift and without direction.

Adrift - Sand Swirl - November 2016

After InkTober Is Over

Now that InkTober is over, I feel a bit out of sorts. I don’t have a daily prompt to look forward to, like I did for the entire month of October, nudging me down a particular path, whether with my thoughts or the topic to draw. I liked having that daily structure. Modifying the challenge for myself to focus on my mindfulness practice – as I set out to do on Day 1  – increased my enjoyment, even though some days it was harder to get into the flow of writing without my thoughts constantly wandering off topic. I suppose it did help me to practice mindfulness because I needed to bring my thoughts back to what I had chosen to write about and stay with it to finish a coherent piece.

I also realized during the InkTober challenge that I’m not sure what my preferred drawing style or techniques are and that showed in what I produced. Although I managed to surprise myself on some days with my drawings, I had to stretch my artistic abilities. After some thought, what I’ve decided to do now to maintain a daily creative practice, instead of doodling or drawing or writing poetry when the mood hits me, is select one of the many creative books I’ve been stockpiling and work through it as if taking a course. I may not post my progress every day because I learned how tiring it could be, mentally and physically, to push myself to complete a daily challenge. However, even if I don’t post about it I will be occupying myself with something to improve my creative skills and to ward off boredom.

I also need to get back to where I left off writing about all my medical treatments and misadventures. I obviously haven’t written about that part of my world for a while, but there are still things happening that I hope might be helpful to others living with issues like mine. I’ve had a new medication added to my pain management cocktail and I have two important additions to my treatment plan coming up, which I’m counting on to deliver some changes to my health, but if they don’t maybe someone reading about them will benefit from them. The first addition is a six-week mindfulness and yoga-based chronic pain management course called iRest. The course starts next week and my therapist referred me to it. The second is a more invasive procedure that will happen under my pain specialist’s supervision at the hospital in the day/ambulatory surgery clinic.

I no longer have daily prompts, but I will have lots to keep me busy. With all the upcoming activity, I have to remind myself of the most important take-away I learned from InkTober: that even though some of it might be fun, I don’t have to finish everything at once.

Bright Cone Flower Sketch - October 2016