LIFE WITH AN EVERYDAY ACHE

Hello beautiful people.  

There’s something I wish to share.

I haven’t written a piece in my blog in many years, choosing instead to share my feelings in lengthy Facebook posts or impassioned conversations.  This time, I felt that I needed to do it here.  I suspect that subconsciously, something about returning to The Bodhichitta Bowl felt slightly more comforting… I’m not sure.  I just knew that this time felt different, and definitely more personal.  So I find myself back here for my first post in a long, long time.  

What I want to talk about is by no means earth-shattering, or even particularly interesting.  It is also in no way remotely unique to me.  This is everyday for SO many people.  As I get older, however, and spend more time getting to know the many layers of myself while walking alongside others that I teach and mentor and care about, I’ve realized and re-realized that I need to embody all that I would hope for them to.  That begins with self-love, self-determination, and the ability to sit in both frailty and fortitude at the same time.

That is why I need to exhale these words. 

My name is Tanisha and I live with chronic pain.

The hardest part of saying this is feeling that I have no right to say it.  Jesus… now I’m welling up and I’ve barely started typing.  

Chronic pain, as many of you will know, lives in that odd netherland between ability and disability.  I do not have a disability, and I know how privileged that makes me in a world that has been constructed to exclude people who do at just about every juncture.  To speak of my pain out loud — to expect anyone to read about it — feels self-indulgent in that context.  I have spent years telling myself to not complain, to do what I must in order to lessen the discomfort and increase my strength and physical resilience.  That inward focus is good.  It has gotten me through many a day, a week and a decade.

As is the case with many people, I do not owe the moniker of Chronic Pain Carrier to a singular condition or event.  My pain is a composite affair.  It begins, oddly enough, with my shyness as a child.  I was painfully shy as a little girl, particularly before my sister was born, and often aimed to be less visible and to make myself smaller amongst adults.  I did this by slouching, pulling my little body into a turtle shell.  My mom constantly urged me to sit up straight; I’d do it for about 3 minutes before sinking back into myself.  I was diagnosed with scoliosis at a very early age.  A doctor wanted to put a metal rod in my back; my parents said Hell No.

Thus began an over four decades long battle with posture, a battle that continually courted sadness and intense physical pain.  When I hit puberty and took after my full-chested paternal grandmother and great-aunts, the desire to hide returned and the progress I’d made with my posture was undone.  This was only amplified further after an assault in my late teens.  I found safety in my rounded back, my concave untouchable place.  Attempts to sit up straight made for good temporary aesthetics, but painful long-term reality.  (My poor posture led to costochondritis; look it up for the deets.  Not a good time.)   

The need to hide was a huge part of what led me away from acting for so many years, as much as I love it.  As many actors do, I always felt a sense of judgement and external evaluation that my scoliosis and what I was trying to downplay only heightened.  Being a musical artist was totally different.  I never felt that.  The music was mine and the feelings were mine and although I spent a lot of time onstage, there was sense of groundedness and serenity that I always felt in that realm.  So beautiful, almost divine.  Are there moments of divinity as an actor?  Yes, of course.  But I always sensed that the cost of those moments was scrutiny.  As a singer-songwriter I always felt that my individuality was my superpower.  As an actor, I always felt that my inability to conform to the perfect and statuesque posture and build made me a liability.  

In 2014, I suffered a simultaneous ankle sprain and fracture.  To this day, although the bone healed, the ligaments in my ankle never completely did.  That meant that my knee had to do more work to compensate for the slightly weaker ankle, which in turn put too much pressure on that knee and led to a hairline fracture that took longer than it should’ve to heal.  To compensate for what were now two compromised joints in one leg, the other leg began to carry more of the burden and I eventually started to occasionally limp on really bad days.  You can probably guess what happened next.  The domino effect.  

IT band inflammation.  Meniscal abrasions.  Knee pain began to make visits that were lengthier and lengthier.  This was bad news, because few things impact your back like having unstable knees.  They affect your gait, your posture (ugh, that word again), and put strain on your entire musculoskeletal system, especially the lower back.  That led to my first, and still only, thank god, experience of sciatica.  I still consider it to be the worst pain I’ve ever endured, which is saying a lot considering that my ankle ligament tore and ankle bone snapped at the same time.  But holy crap.  Sciatica, which I’m sure many of you have also sadly experienced, was nearly unbearable.  I imagine that maybe only natural childbirth is worse (but at least you get something awesome out of that).

In 2020, the two Ps hit my life concurrently: pandemic and perimenopause.  The former was a global hell and the latter, which I am weathering in sisterhood with so many of my friends & relatives & colleagues, continues to be a personal one.  (Am I right, ladies?)  I won’t go into detail because that’s an essay all its own, but I will say that the metabolic mayhem and the over THIRTY symptoms that can accompany perimenopause — including the ever-popular weight gain — is so demoralizing, jarring and mind-numbing that if you don’t have a healthy dose of self-love before it arrives, it can be a dark dark place.  Even if you do manage to muster that ability to kiss yourself on the cheek and hold yourself close, it’s difficult.  And guess what happens when the number on the scale goes up as you stand on what are already rough joints and an over-compensating back?  

More . Pain .  

I found out that I had osteoarthritis in both knees.  It couldn’t have been less of a surprise, albeit a sobering one.  At the same time, the pain in the bottom half of my back was desperately in need of an anger management program.  Sometimes it was so bad when I woke up in the morning that I couldn’t move.  I couldn’t sit up.  I couldn’t roll over.  It was like that part of me had seized up while I slept to the point that it wouldn’t or couldn’t awaken when the rest of me did.  It would take minutes to squirm into a position that could lead to me sitting up, getting my legs over the side of the bed, and standing.  It’s hard to explain what it’s like to greet each morning like that.  The day seems defeated before you’ve taken a breath.  

When it got to the point where I dreaded going to sleep because I dreaded the pain of waking up, I went to get it checked out and received yet another diagnosis — lower lumbar facet arthritis.  What?!  Basically what that meant was that the discs in my lower back were compressed, which meant that the space that the nerves should have to move between them was reduced.  So my sciatic nerve was occasionally being impinged my one of my discs and brushing up against it, which would result in searing jolts of pain.  

That was the night I completely broke down in tears.  It was so crazy.  No one could look at me and know what I was feeling at any given moment.  They couldn’t see the tensor that was often around my knee, or how many buses I would let pass me by at the bus stop until I could get on one with empty seats.  Then there was the stress of being on the bus and fearing that someone who clearly looked like they needed the seat more than I did would stand right in front of me, making me look awful if I stay seated.  I wanted to yell “I have arthritis in my knees and back!”, but — maybe they had it as well?  Maybe other folks who were standing did too??

I remember when my niece and nephew were really young; I couldn’t wait until we could go to the CNE together the way my aunt used to take my sister and me each summer.  I wanted to do family outings to Wonderland and go for walks in the park where we could run around and do simple and fun things like play catch or tag or make bad attempts at badminton.  But I don’t do those things, because the pain could start and I no longer would be able to fully participate or keep up.  I also never know when I might feel the need to leave and crawl back into bed to rest whatever inflamed part of me is screaming that day, and then I’d beat myself up for being the person who dragged the whole day down.

I can’t tell you how many times friends have wanted to get together and said “We should go for a long walk!”  My chest tightens instantly at those words.  Walking used to be my favourite form of exercise; so meditative and lovely.  I shake my head in disbelief when I think back to the distances I used to walk!  Now, depending on whether or not the arthritis is flaring on a given day, it’s not something I can do at length anymore.  I still like to walk, but it can’t really bring me joy that it once did.

That’s hard.  That feels like a loss.  

Yet again, I find myself wrestling with guilt because I can walk, and I can climb a staircase, and I can get up out of a chair or get up from the floor.  I can’t do any of them thoughtlessly; there are movements I need to consider and consciously adjust to minimize pain.  I can’t have bags of groceries in both hands climbing the stairs, as one hand has to remain available to hold onto a railing in case my knee buckles as it’s rising onto a step.  I have to climb stairs in a very specific way in order to not feel any pain.  But I can still do all of those things, and I do them all the time.  I know that for someone with a disability who faces a higher accessibility hurdle, or for anyone battling serious illness, this all likely sounds incredibly benign — like groaning about some aches and pains.  I know that I could have a much bigger load.  But it’s been a long road for me to get here, to be able to talk about this, and not feel like it’s self-centred or self-aggrandizing or woe-is-me to do it.  

The oddest part is that I used to know what it was to feel like myself, physically.  I know myself very well mentally, spiritually and emotionally, and feel rooted in those realms, and am deeply thankful for that.  But because of what chronic pain is like and how all over the place it can be, I really don’t know what it is to “feel like myself” physically anymore.  Still, I’m getting on the field again instead of only sitting in the stands.  I’m acting, and singing with a bit more ME after losing the strongest and best parts of my voice to COVID… although the road back from that will be longer.  I take it all a day at a time, and every moment that is devoid of pain is a win and a blessing.  

Chronic pain has been the truth of my life for much of my life.  I know that it’s the truth for SO many others as well.  I want everyone for whom this is also your life to know that I feel you deep down, and to know that you aren’t guilty of ingratitude if you have a good cry and yell that it sucks.  Because it does.  One can truly appreciate one’s life, and smell every rose, and acknowledge that the thorns hurt too.  

For me, there are good days.  Days when I catch myself feeling completely fine, and I cherish those moments.  I often dance on those days!  I’m thankful for them.  There are far fewer of those days than there used to be, but they definitely do exist and boldly and brightly so.  My body works more than well enough most days for me to navigate the world as it is.  But the world needs to change.  I am very lucky to have a tiny but lovely team of two health professionals who assist me in managing the discomfort while simultaneously helping me to move through the pain to the promise of strength.  Is there often pain that shoots across my face?  Yeah, for sure.  There’s much more that my face never reveals.  But like many others, I go about my life because there is no other alternative but to hide away, and the emotional pain that comes with hiding far exceeds the physical pain that comes with trying.  And so each and every day, I and so many others get on with the business of trying.

If you’re still reading this, thank you.  Much love, and I wish you peace.

~~~~~~~~~~~~~

by 

Tanisha Taitt