As I drove to meet Jeremie, Brian and Taylor, I was excited to see faces I hadn’t seen in a really long time. I’m lucky to know the boys from teaching yoga, before Sick Boy was this explosive initiative and before I myself was a mom. So much has changed from when we first knew each other. I never, ever thought I would be on a podcast to talk about grief. But here I was.
Four and half years ago, I lost my two and half year old son Tommy unexpectedly. Tommy’s birth and death were both deciding moments for me. Initiations. A gateway to a new life. I’ve written online about my navigating through loss in a project I call the Grief Project. The project is four+ years in the making, and you can watch the CBC documentary Tommy Tinker Forever here http://www.estellethomson.com/tommy-doc/ - titled after the hashtag I use when posting about Tommy.
Through my transformative journey in grief and love, I’ve been blessed to realize how wide and alive grief really is. That we grieve our lost loves, but that we also grieve the life we expected to have with them. That grief is felt in separation of many kinds- a divorce, a cancer diagnosis, a chronic illness- these types of grief are rarely highlighted in our culture. Environmental catastrophes, mass murders, wordily disasters, never mind trans-generational grief which is never mentioned in our culture but affects us all the same.
There are other things I have learned and still learn every day. First, that teachers are present in our lives in many forms. For example, my studies in yoga and symbols, painting flowers and meditating in front of a sunrises have taught me more than any book or my Masters in Counselling combined. Second, to not be afraid or thrown off by sadness. Instead, to integrate and welcome it to dance with it and to imagine grief like a garden that needs tending. Third, that looking, listening and connecting with people in pain can help heal our own.
Grief is love and love is grief. They are both one and the same.
Finally, I hope I made it clear that I am grateful for both my art and yoga practice – both of which I am indebted to in my recovery and rising in my new life the best I know how. And I did this by practicing them both a little bit every day, a concept I refer to as ‘small daily acts of bravery”. Art and yoga are agents in overcoming transitional life periods but also in staying inspired in how I choose of see life’s wonders and delights. I believe in magic and Tommy has helped me see more of it. As a teacher at heart - I have been blessed in guiding other women most especially - I use art, yoga and mindfulness practices as tools for recalibrate in times of need. My goal is to teach others to see there is freedom to be found by doing what you love a little bit everyday. You can find some of my tools for transitions here: http://www.estellethomson.com/tools-for-transitions/
Looking back on my Sick Boy conversation, there is so much more I wish I had said! Perhaps how fundamentally my support system was and still is. That my marriage grew stronger- but like any couple- is not perfect. How space in both body and mind is vital in dealing and coping with physical and psychological pain.
Bottom line is I am thankful for Jer and the boys for seeing the importance in these types of conversations and for having me on the show. In a way, we are all on the same mission: TO TALK ABOUT THE STUFF NOBODY WANTS TO TALK ABOUT.
This month I celebrate the two year anniversary of my RA diagnosis, and weirdly enough, it is cause for celebration.
If I’m being honest, I think I’m afraid, terrified to record what it is like to live with this disease. Scared even to call it that… a disease, but that is in fact accurate. RA is an autoimmune condition where my immune system mis-identifies my joints as a foreign body and attacks these joints as it would an invading germ or bacteria. The result is terrible swelling, inflammation and pain, and without treatment, the destruction of perfectly healthy joints. It often manifests itself between the ages of thirty and fifty years old, and so despite the fact that people I meet express the idea that I am so young to be suffering, I am actually right in the middle of the age range for onset.
It is now January 2019, which means I began to notice odd, seemingly benign symptoms almost 4 years ago. Some people with RA experience an acute onset, usually brought on by some type of physical trauma. My onset was slow and sneaky: sore, tired feet at the end of the work day, moderate pain in my hips and knees, stiffness in my feet when I first got out of bed. This was Fall 2015.
Fall is an important time for me - you see, I am a Performing Arts teacher. (In fact, I was little Jer Bear’s Drama teacher, musical director and improv coach!) During the 2015 school year, I injured my shoulder after crashing into two students during a drama game. (This may sound a bit wild for a public school classroom, but it is a common occurrence in the very physical development of theatre. There’s a reason we call it a ‘play’!) It was an injury that required a week off work and months of physiotherapy to settle the swelling and inflammation. I felt that I was affected more than I should have been by a simple fall, but I chalked it up to age. “You have to remember you’re not in your 20s anymore,” cautioned my mother, but it was at this time that I began to sense something might be wrong.
By the following summer, I was experiencing occasional numbness in my fingers and toes throughout the day, as well as even more pain in the morning. Getting out of bed was like walking on glass shards for at least 15-20 minutes. The stiffness and tenderness wore on until 11am, sometimes noon, then I would get 4-5 hours relief until supper time when my hands and feet would begin to cease up again.
A Google search of my symptoms led me to think it might be something more serious, such as RA, definitely autoimmune, and so I went to see my family doctor. She did everything right. She listened. She asked the right questions. She sent me for blood tests. Nothing came back. (It turns out 30% of people with RA do not demonstrate an elevated rheumatoid factor in basic blood tests - sadly, I belonged to that figure.) The only thing she didn't do was send me to see a specialist. Her recommendation at the time was regular massage, pain medication when needed, epsom salt baths and rest. I was teaching full-time, very physically demanding courses like Dance and Drama, and my youngest son was 3 years old. Rest was very difficult to find.
At this point, it gets blurry for a while. Looking back, I think I was in survival mode. I had what the Hubs called my ‘team of experts’, a group of professional women who were keeping my body going. I was seeing two massage therapists, one for relaxation and the other for very specific techniques for pain management, a chiropractor, and in the New Year of 2016, a naturopath and an acupuncturist. The combined expertise and efforts of these women managed my pain and symptoms, and enabled me to keep working and living my life, despite the growing chronic pain that had become a part of each day. I am so thankful for each of them - many of whom are still part of my disease maintenance - supporting me with (considerably less) pain management, and helping maintain my health, strength and flexibility.
In May 2017, I found out I was to teach two new courses; Grade 9 English and Grade 9 Core French. I fell into a tailspin. One new course, perhaps I could have handled that with my current health situation, but two? I felt overwhelmed and stressed out. Within weeks, I found myself in the middle of my largest flare up to date. Despite all the expertise, therapies and dietary restrictions designed to manage my pain and inflammation, I found myself unable to get the swelling down in my hands and feet, unable to manage the pain without medication, unable to work. I returned to my family doctor and asked for help. Actually, I begged. I pleaded with her to refer me to a rheumatologist and asked for a safe form of prescription pain meds. I left with a script for Naproxen, two times a day and a referral to the rheumatologist of my choice.
That was a tough summer. The heat had a dramatic effect on my hands and feet, and I was often puffy and sore. The pain meds helped take the edge off, but there was still a sense of never-ending discomfort. I wasn’t able to stand for long periods of time, I could no longer write as using the keyboard caused immediate pain in my right wrist, and dancing, jumping, running, walking for longer than fifteen to twenty minutes… all of these activities were out of the question. You remember, of course, that I was a mom with 2 young boys and a teacher of very active classes….
That Fall, I couldn’t work full time. It was one of my lowest points. I cried in front of my students as I explained that it was taking more energy than I had to teach 5 days a week and that I was going to be taking Wednesdays off until further notice. I was sleeping most of the weekend and going to bed at the same time as my children. I had no social life, no time alone with Hubby and no energy for managing our home and finances. Things were shit. I felt like a poor parent, a terrible wife and an incompetent teacher.
Then two years ago, I parked on a side street in downtown Halifax and hobbled my way up to a rheumatologist’s office on the second floor of the Professional Centre. The appointment began with a conversation. She asked me to explain what had brought me to her office. Within fifteen minutes, I had an initial diagnosis. “Your story is that of rheumatoid arthritis,” she said. She did send me for further blood work (more specific and expensive testing that would show I had superhuman amounts of inflammation in my bloodstream) and gave me a very thorough physical exam where she plotted my affected joints on a strange map of the human body. The doctor told me another 6 months without treatment, and I would be walking with a cane. As it is, I have permanent damage in the joints in the toes of my right and left feet, in my right wrist, and in the fingers on both hands. I cried, sobbed actually, right there in her office. She passed me a box of tissues with the reassurance that I was young, otherwise healthy and strong, and we were going to treat this disease aggressively and quickly to prevent any further progression or joint damage.
Finally, a diagnosis. A prescription. A disease. It was cause for celebration. I do feel lucky. I have responded perfectly to the initial prescription (Methotrexate) and dosage. The full body xray showed no progression past my ankles and wrists, which is good news as RA can affect lung tissue. There has been no further damage to my joints and most days I am pain free, or at least able to tolerate the discomfort. I have not had a serious flare up in almost a year. And greatest blessing of all, I have been given the perspective of disease, a remarkable lens through which to view my life.
The big Ds (disease, divorce, death, disaster) are checkpoints, if we allow them to be. They are a moment of pause and reflection to take stock of our lives… yes, they cause a wee bit of YOLO, the knowledge that this is it. Health and life are not everlasting and we gotta use the time we have. It’s cheesy, but it’s been real for me. I have never experienced ongoing illness like this and as a result, I’ve been changed.
And so now, I celebrate - I raise a glass to my diagnosis and my disease, and the new lens it’s given me through which to see my life, my health, my passions and the ones I love. It’s altogether too short, the time we have to do the things we love, to be the person we want to be, to care for those most important to us. I wish that each of you reading this might never have to experience illness or disease, but chances are you will. We are human, after all. However, if and when you do, I hope for healing, and the clarity and insight that comes with walking through the that dark night into light.
Cheers to you, reader, to Sickboy and of course, my Rheumatoid Arthritis!
In July of 2017 I was a perfectly healthy 29 year old newly engaged woman with major baby fever. By August 2nd I was a breast cancer patient meeting with a surgeon who used words like “outcomes” and “chances of survival”, learning that I would be given every breast cancer treatment in the book which might leave me infertile.
Since then I’ve had surgery, six rounds of aggressive chemotherapy and 21 radiation treatments, all of which have wreaked havoc on my body. Now that active treatment has come to an end, my physical strength returning, my hair growing back, I think most people assume that cancer is now something I’ve conquered and put in my rear-view mirror. In reality, I think I’m only now starting to process the trauma that I’ve been through and am now facing the biggest challenge yet, finding and adjusting to my “new normal”. The “new normal” looks a lot like the old one to anyone looking in, but it’s plagued with lingering chemo side effects (brain fog, fatigue) and constant anxiety. Not to mention, I walk around with a metaphorical tattoo on my forehead in the form of an awkward haircut that seems to read “I HAD CANCER PLEASE ASK ME ABOUT IT”.
Before this shit show started, I felt so certain about how my life was going to unfold. I was blissfully ignorant to the idea that anything, let alone a life threatening illness, could derail my five year plan. Obviously, I know this certainty was never real, but I miss looking forward to the future and seeing only the good.
Breast cancer has changed me, in many ways for the better. I have a different perspective now on what is important to me and what aspects of my life are most deserving of my time and effort and I am grateful to have been given this gift now, while I have so many years ahead to apply it. Breast cancer has taught me empathy. Because of this disease, I am a better, kinder, more patient person and I can connect with people in a deeper more meaningful way. Breast cancer has taught me how to be vulnerable, how to how to ask for and accept help and it has opened my eyes to how much love and support I have in my life.
I want to thank Brian, Taylor and Jeremie for giving me the opportunity to talk about this experience publicly. Acknowledging (and laughing about!) some of the most difficult moments of the past year and a half has been truly cathartic. You guys are killing it, and I wish Sickboy Podcast every success.
Finally, I want to throw out one final reminder that CANCER DOES NOT DISCRIMINATE. Breast cancer in younger women is a lot more common that people realize and because we don’t get regular mammograms it’s often not diagnosed until it’s at a later stage. So… EVERYONE HAS TO CHECK THEIR BOOBS!
Hi, I'm Alexis. I experienced amniotic band syndrome in the womb, so I was born with a congenital amputation on my left arm. Well, maybe 'amputation' isn't actually the best word to describe my limb difference, because I never really had a whole arm to begin with. What the doctors think happened was that when I was developing inside my mom, a piece of amniotic tissue got caught around my left forearm and stunted the growth of my arm. This really was their best guess in the eighties. Nobody actually knows what really happened, and I kind of like the mystery :)
One of my favourite stories growing up involves a sweaty ball bit at chuck E Cheese. It was my birthday - I think I was turning 10 or something - and I had a myoelectric prosthetic arm. It was battery powered and had electrodes that touched my muscles, and by moving my arm a certain way I could open and close the hand. It was great for party tricks. But on that fateful day in the ball pit, I guess I was just having too much fun, and my arm slipped right off my hot and sweaty 10 year old body. All I remember is my not-so-pleased dad digging around lost socks, old bandaids, and plastic balls to try and rescue my (extremely expensive) arm. Once it was saved, he handed it to my mom through the mesh of the ball pit and she casually popped it into her purse, with the hand sitting just outside the opening, as if it was waving it everyone behind her.
A few decades (and a few more fake arms) later, I am the proud creator of a YouTube show called Stump Kitchen, which celebrates limb difference, body diversity, and disability through cooking! I discovered a love for cooking and working with ingredients when I started cooking for myself after becoming vegan, and I noticed that I used my stump naturally as a kitchen tool - a juicer, a masher, as a spatula, you name it! This whole process helped me fall in love with this awesome part of myself that I had kind of forgotten about in my adulthood (yes, sometimes I even forget I have one hand!) I also swear, wear sweatpants, and don't give a shit about dropping or burning stuff! Now Stump Kitchen is a building a beautiful community and audience of folks just discovering how to exist in the world with a limb difference, or any type of disability. It's a safe place to try out vegan cooking, because that can be kind of a daunting thing! It's creating representation of diverse bodies in the media, which we desperately meed more of. It's what I get to do with my life now, and I am so. damn. grateful.
Audrey Parker is a woman with a plan. With stage 4 breast cancer that has spread to her bones and her brain, she has decided to end the suffering on her own terms. Today, Audrey Parker dies through the service known as MAID (medical assistance in dying) and she is doing it with grace. Audrey is and will forever be one of the most gracious and beautiful guests we've ever had on our show and we are a million times more rich in LIFE for taking some time to talk to her about death.
Buckle up, people. Truth bomb... You can still be super fit, eat well, get lots of rest, be ultimately “healthy” and STILL have a disease. This wasn’t something I knew was possible.
After 3 months of chiropractic and massage appointments, failed painful treatments, persistent low back pain and severe sciatica on top of sleepless nights - I bit the bullet and paid for an MRI. The symptoms from the L5-S1 Disc injury we’d be treating were getting progressively worse and we needed to see the severity of this bulging disc to truly understand what the best next steps would be.
To my surprise (and I think to everyones surprise) the MRI revealed something much more intense. Upon reviewing the MRI we discovered there was no disc injury. The excruciating pain and disc injury like symptoms were actually due to a large tumour that had formed on my sacrum, compressing my sciatica nerves in both legs. The initial shock set in, “how in god’s name is this happening to me”, and I remember thinking “this has to be a mistake.”
The doctor reviewing the MRI with me wasn’t able to give me much information and we’d still require a biopsy to really understand what type of tumour this was. He informed me that he’s only seen this a few times in his career and at first glance, he believed the tumour to be a rare cordoma and only 1 hospital in Boston would have the ability to remove it by using a system called Proton Therapy. PROTON WHAT??! It looks like something out of Stargate.
Next came the results from the biopsy. A Giant Cell Tumour, thankfully benign, but the flip side to it all was that this type of tumour is quite rare and due to the location, it would be incredibly dangerous to remove. At that point, they started me on a chemotherapy injection called Denosumab. They’d seen success with this type of treatment bringing down the size of giant cell tumours. So, then began the self administered shot every 28 days.
I spent the next month or so completely hospitalized. I’d been experiencing nerve pain like no other, spasms that would last for hours. I couldn’t walk on my own and i’d lost feeling and movement in my legs. I was scared, I rarely showed it, but I was terrified. I was too proud to have a nurse help me shower and I was too proud to admit I needed help and that I wasn’t okay. I was surrounded by amazing people, yet felt completely alone. I hate to admit it, but my constant high and being in a constant fog was the only thing that kept me from facing the real underlying fears.
Once I was discharged from the hospital I spent my days waking up at 6AM, going to my couch, laying nearly all day and at 10PM I’d wheel myself to bed. I was in massive amounts of pain, I couldn’t do anything on my own. My world was slow and I grew more and more depressed as the days went on. What if the nerve pain never goes away? What if I can’t walk normally again. What if’s flooded my mind and as each day passed I was getting closer and closer to truly not wanting to be on this earth any more. The days felt like an eternity but I began to have a few breakthroughs. I was able to sit up straight on my own for very short durations and I took my first few steps unassisted. It all came with a painful cost, but those little moments gave me an ounce of hope.
In a perfect world, I end this story by telling you I kicked that mutha-f*cka in the face and booted it to the bottom of the ocean and it never came back again. Our world isn’t perfect and neither am I. I was on treatment from the time I was hospitalized until just over a year ago. I came off treatment for about 8 months and just this past February after my routine MRI and bloodwork, we discovered the tumour was back. Now, I’m back on treatment indefinitely.
My life is 90% normal. I deal with nerve pain on and off, I’m extremely tired what feels like all the time and the fear of losing so much time like I did when this first all began is crippling at times. Although I’m incredibly optimistic about it all and I will say this is the best thing that’s ever happened to me. I doubt I’ll ever see a cure or reason why I have this tumour in my lifetime. Every time I prep my needle, I relive moments of my darkest hours. This is that 10% that lingers. That 10% that feels like 90%. I’m still on a journey to understanding how to navigate this emotionally and physically. On a positive note, this diagnosis has pushed me to pursue my true dreams, to be unapologetically myself and encourage others to do the same. Life is too short to wait for things to happen.
I'll leave you with a few 1 liners, things I went back to countless times, then and now.
Don't Believe Everything You Think.
Your circumstances do not define you. You have a the autonomy to create the life you want to live.
Spending time with Three Dudes I’d Never Met Before, in some stranger’s apartment in Toronto’s Liberty Village, is nothing new to me. I’m Bif Naked, and I have enjoyed a bit of an adventurous life, as a performer and artist for over twenty-five years. Though I would never generally propose any young lady (or person) meet strangers in strange places, I am A Fearless Girl who just loves to TRUST. (Please note, I do not refer to this “trust” behaviour as “taking a risk” because it is actually about Trusting and Having Faith in Others) Well, as I predicted- I was blown away with the sheer magic of that day. In fact, It will go down in my Personal History Books as one of the Greatest Afternoons Of My Entire Life. My heart is still full, and I will be forever grateful for having met Brian Stever, Taylor MacGillivary, and Jeremie Saunders from Sickboy Podcast, and I am a better person for it.
These guys are Warm, Inspiring, Intelligent, Fun and Funny, and They are breaking new ground with this important podcast. They are a gift to the world. (Please subscribe)
I even wonder if I actually knew these wonderful humans in a past life! I mean, we had very Mirrored hearts and common ideologies. Mutual understanding is hard-to-find shit, and it’s crucial for our emotional and spiritual well-being to make friends that we connect with on deep levels.
The truth is, I LOVE LIFE and I keep finding more and more reasons to LOVE IT EVEN MORE. Mostly, that’s because of the people I meet. Every person has a story that is about overcoming, moving forward, and real love energy.
It matters little what my past handed me, like cancer (tit) and the chemo and radiation, surgeries, more surgeries, complications and all the while having to still work (like most of my breast cancer patient buddies) and still take care of our families. But the best education I could have ever received as a volunteer and patient advocate was to BE a patient and I felt blessed to gain this insight, and became a volunteer, discovered I love hospitals, and found my calling (when I wasn’t being a rocker on the stage). I made a record during chemo, and went on tour when I was able, thinking the worst was behind me. But, three years later, my kidney failed (infarct SUCH A FUNNY WORD) and I had to get an operation on my heart while I was awake, that re-wrote my heartbeat and it was The COOLEST Thing EVER!
And every day I am alive continues to be funny and fun. My heart still works, and my tit is still nice and quiet. Life gives us the weirdest gifts, and I will always be awestruck by how awesome it is. I will forever be the Fearless Girl, but having friends that move, motivate, uplift and inspire me like Brian, Jeremie, and Taylor, make me TRUST more, FEAR less, and LOVE LIFE MORE DEEPLY.
Health is wealth, and Friendships make us even Richer.
Try saying Pseudomysoma Peritonei 10 times…..ha, it’s a mouthful. It’s also a lot to wrap your head around when you are told, after waking up from a routine procedure that you have a rare mucinous tumour originating in the appendix. The APPENDIX?? Seriously universe!?? An organ that I don’t even need somehow sprouted cancer?
And so began my journey with PMP. Basically, if left untreated, the mucous produced from the tumour could lead to ‘jelly belly’ (not to be confused with those delightful miniature jelly beans), which could lead to organ failure. So naturally, after receiving the diagnosis we started researching the heck out of PMP, how and where to treat the damn thing.
It lead us to my superhero, Dr. Temple, based in Calgary, AB. This gem of a doc had been working with PMP patients from across the country and he agreed to take my case. I think if I had known what was in store, I’m not sure I would have jumped on the “let’s do this” train, quite as quickly. Treatment for me, included a 12-hour tumour debulking surgery, followed by a heated “HIPEC” chemo wash applied directly after surgery. In post-op ICU, complete with 16 tubes, I remember feeling like some sort of character from Alien mixed with the State Puff Marshmallow man. However, I got through it. The Simpsons got through it, and after 3 months I was back at work and back to life J
As much as I would love to stay I skipped off into the cancer-free sunset after that, the diseases unfortunately resurfaced an additional four times over the next 14 years. Each recurrence meant more surgery, more chemo and more daytime TV…shout out to ELLEN! Ha, but oddly enough, through it all though, I always had this underlying sense of “you got this” which stemmed from my trust in Dr. T. With each encounter, he magically seemed to put our minds and our hearts at ease and I will forever be thankful that we found him.
So sad sob story aside, this random ride with appendix cancer has pushed me out of numerous comfort zones. The phrase “Sarah, you’ve been through much worse” almost serves as my magic bullet for overcoming fear. From a breathless ascent up kilimanjaro, to a Vancouver-soaked triathlon, to belting out the anthem in front of 20,000 Canucks fans…it’s been an incredible ride. One I am excited to keep tackling, with or without PMP.
We’ve all heard that age-old saying: when life gives you a stutter, build a ridiculous vocabulary from an early age so as to avoid saying words you physically can’t say.
My name’s Matt, I’m 27 years old, and I have a severe stutter. Stuttering is generally defined as a speech disorder where you involuntarily repeat or prolong sounds or syllables while speaking, in addition to moments where speech (again, involuntarily) has unnatural pauses or blocks. In more severe cases (hello!), stutterers can also present with secondary (or “struggle”) behaviours, which can look like head twitches, arm movements, eye movements… again, all involuntary. Stuttering is actually pretty common in kids, and around 60% of kids who stutter will either just grow out of it or get over it with the help of speech therapy. About 20% of us (again, hello!) are not so lucky.
The only real treatment for stuttering is intensive speech therapy aimed at slowing down your speech and having you really focus on connecting your words together so as not to introduce any breaks in speech in which a stutter can jump in. But, like so many brain rewiring processes (think learning a language), it’s most effective at an early age. So while I went through YEARS of speech therapy, different programs, different speech-language pathologists, nothing ever completely worked. It would get a little better for a while, but it would always come back with a vengeance. And the studies show that if you’re a stutterer still into puberty, you’re very likely going to be a stutterer for the rest of your days.
Every stutterer stutters differently (say that 3 times fast – I can’t even say the word “stutter,” how unfair is that). Personally, my stutter presents as a lot of “blocks,” where my face gets scrunched up and I physically can’t move it to make the next sound in a word, and a behaviour I’ve subconsciously developed to try and get some more air in before a word where I just go “uh-uh-uh-uh” a bunch of times before a word. Bonus: my head jerks back and forth when I stutter and my eyes go all over the place, in which I think my body is trying to physically fling the words out of my face. Understandably, this causes concern in some people when I’m talking and suddenly it looks like a ghost has taken hold of me and is violently shaking me around. (Thanks for the visual, Jeremie, I’m carrying that with me for life.)
You can see how this may affect various social interactions for me. Growing up, I did my best to speak as little possible because I hated the stares and potential mockery for talking like I do, and I still do to this day. I don’t like talking. Historically, it has not been a good time for me. I have a really hard time talking on the phone, talking to any sort of authority figure, any public speaking… and it’s very much tied to my emotional state. Stress, excitement, tiredness – these are all things that I know trigger a bad stuttering day. I also don’t do great in job interviews. I stutter a lot more, and generally with employers that looks like I’m just too nervous to function, or sometimes (re: a lot of the time) they take it as a sign that I’m …mentally incompetent. I can’t count the number of times I’ve gone into an interview, stuttered, and then had the interviewer smile a really big fake Cheshire-cat smile and talk to me in a big calm soothing voice like I’m a puppy. GUYS, I HAVE THOUGHTS, IT JUST TAKES A WHILE FOR THEM TO GET OUT.
It took me a really long time to accept this part of me as a genuine disability. I fought against that label for a long time, until it hit me a few years back that this IS a disabling condition for me, and that it’s OK to ask for help. That being said, I really wish the world we live in was more understanding and accommodating of speech disorders, which are very much an invisible disability. For instance – who made the decision that some things (like talking to your bank or credit card company, or to your insurer) NEED to be done over the phone? I was once told – point-blank – by my credit card company over the phone that if I couldn’t make myself understood, they would hang up. And they did. What’s the point of voice recognition if you have a really hard time turning on your voice? Accessibility is not just an issue for the physical world, and I’m always trying to sell people on that point.
All of this to say, that I have not let this stop me from doing what I want to do. I give oral presentations on my grad school research on a regular basis, I muddle through phone calls almost on the daily, and I make sure that my voice is heard. I know I have my bad days – sometimes I can see them coming and I plan for it, sometimes I don’t and I get through it anyway. I have a voice. It sounds a little different, it takes a little longer, but it doesn’t mean I don’t have things to say.
I lit a match and pulled a bell, ran the streets I know so well
Possessed by what, I don't quite know...it's just a line to tell and show
To the Wind--
This fall marks 10 years since my PEI indie rock band, Racoon Bandit first hit the stage together. Over that time we've traveled the country, released 4 albums, and collaborated with numerous Canadian artists. I sing lead and play rhythm guitar in the band and wrote the above lyrics as part of my song 'Twist in the Wind' back in 2012. I live on PEI now, am 32-years-old, and work and play in the arts for a living.
On Sickboy this week, Jeremie, Brian, and Taylor were rad enough to play this tune in place of their established intro music and again at episode's end. I came on to talk to the lads about my 15-or-so years dealing with chronic venus insufficiency, and tell some stories, including the backstory to 'Twist in the Wind', which recounts the worst night of my life.
Chronic venous insufficiency (CVI) is a condition that occurs when the venous wall or valves in the leg veins do not work effectively, making it difficult for blood to return to the heart from the legs. CVI causes blood to collect in these veins, and this sluggish stasis - or pooling -causes calves and ankles to swell and varicose veins to form. This condition was hereditary - passed down along with many much more lovely traits from my Mum -and has given me hell. Varicose veins can be swollen, throbbing, and painful, and lead to complications such as DVT's (blood clots), chronic edema, and infections (cellulitis, sepsis, etc.)
You can hit the Google for more on these and related conditions, which are most common in seniors and post-partem women. Basically since 2002, I've been told infinite times by medical professionals: "Aren't you young to have these giant swollen feet?" I usually nod or force a plastic smile, all the while thinking "I just want your help...
I chose to have two surgeries, one in 2004 and another in 2011, both which made my condition worse and had serious complications. A 'stripping' surgery (removal of unnecessary peripheral veins) in 2004 didn't help my leg veins, and led to edema, the abnormal accumulation of fluid in certain tissues within the body under the skin. As a result my feet are fucking HUGE. I already wear a size 12 and edema causes my feet to swell up to the size of a slipper sometimes. To deal with this I wear knee-high prescription support stockings ($200 a pair mfka's) that are hot as balls and basically act like a girdle for your legs and ankles, and help keep down the swelling. Other prevention methods include elevation (I sleep with 6" blocks under the bottom of my bed) exercise (hot yoga, swimming, running) and natural diuretics (again, hot yoga sweats, coffee).
The other surgery, in 2011, led to a blood clot, which is a fuck ton of fun. Basically imagine a tiny fist in your leg trying to punch it's way out. Some other fun complications have included occasional ED (bloodflow, baby) and risk of infection in my feet and legs from all this expansion and contraction and cracking skin. Cellulitis has become my most fearsome foe, a nasty nasty infection where bacteria can get into small cuts in your legs and get into your skin and eventual blood stream. Due to my lazy-ass circulation and reduced immune system, these everyday infections (which your body would crush like a housefly) can cause me major hell, presenting as delirium, fever, sweats, chills, throwing up, and a terrifying rash that can turn toxic fast. I've had this condition 8 times and don't wish it on my worst enemy. It's led to missing weeks of work, cancelled Racoon Bandit and other shows, and meant several week-long stays in hospital in Halifax or PEI on antibiotics and saline. I can't imagine the cost to the healthcare system but I am very grateful for our country's system...for the most part.
You'll have to tune into the bahds' Pod to get the rest and hear the story behind the first time I got cellulitis, which is where 'Twist in the Wind' came from. In my fevered delirium I came pretty close to jumping out a third-floor window onto a busy pedestrian street, and ended up stumbling across town for 10km's while this infection raged inside me. Woof.
My greatest learning has been to slow the hell down and take better care of myself, as a band life is wonderful, but super unhealthy at times (boozing and smoking, sitting in cars for hundreds of hours, no rest) and surely hasn't helped all this craziness. In recent years I am trying to get after this condition and keep it in order, something I wish I'd done in my early 20's ("I'll be aight, I'm a young MAN..." ...gad, haha). Although helpful nurses and my family doc treated me extremely compassionately, specialists and vascular surgeons were less helpful and occasionally very negligent, barely communicating risks, side effects, or important steps in the process and acting as cold mechanics. That said, at the end of the day, our own health is on us to master and navigate, so, to my younger self I say pay attention, do your research, and take care of yourself!
This whole experience, talking about my disability/condition/shit with Jeremie and the boys (even writing this) has been really cathartic and positive and helped me channel a lot of built-up angst and confusion into something positive. I thank them and any readers/listeners for this opportunity. Please feel free to email me with your own tales or any questions, as I've encountered literally 0 people in my life with a similar condition. Much thanks.