8 Years.

I managed to get through May 2nd this year without really realizing that it was May 2nd.  I had a few friends and family reach out to me late in the day to comment on my surgiversary, but for the most part, it was a day in the life.   A day in the Covid-19 life.

Now there's perspective.  Covid-19.  I'm fine.  My friends and family are fine.  We are bored out of our minds with either not working or working from home, and we miss socializing with each other, but ... we're fine.  My neuropathy, my legs that can fuck-right-off, my sleep that is interrupted by pain,  is nothing compared to those who have lost lives or lost loved ones in these pandemic times.

My post surgery life is what it is.  To those who are new to a life after an intramedullary ependymoma, I recommend you start from my beginning eight years ago.  To those who have lived this journey with me, or have lived their own journey, you will know and understand that at some point your recovery is where you are .. forever.  For me ... I have had no nerve damage recovery since three months post surgery.  It is what it is.

I have moved on.  I have finally moved on.  It has been many years but this was the first year where I didn't cry on May 2nd.  The first year where I didn't reread the entire blog (and still haven't) and feel remorse about my old life and what could have been.   My new life is awesome, and awful, and normal, and horrific, and blase, and angry, and happy, and all those things that are life.

To those who are just beginning I'm sorry .. I'm so, so, sorry.  But there will eventually be a new version of okay.   To my old friends who have lived this with me ... cheers .. raise a glass of your favourite beverage and cheers to what is.  The good, the bad, and the ugly.  I love you all.

This will be my last blog entry.  My email remains open to all who wish to talk about their experiences privately (sarahependymoma@gmail.com) and I will always respond.

Stay safe, stay healthy, and live for today.

xoxo

Sarah

ps - I would still sell my soul to be able to wear stilettos, so if anyone has any connections .... :)

Another Year in the Books

My 6th surgiversary and my annual update on how I am doing.

I'm okay. 

I followed through with my 5th anniversary resolutions and lost the weight (and have kept it off) and got back into shape.     I ran a 5k, a 10k and a half marathon ... if you take the term "ran" loosely ... though I was proud that my half marathon time was under 2 1/2 hours.  Not by much, and a very far cry from my able-bodied running times, but for post-Herm me ... I was zen with my result.

I also hired a personal trainer (asshole) who promptly started to make me do all the things I told him I couldn't do ... you know  ... squats and lunges and all things evil.  It's been a ton of hard work, falling off the wagon, climbing back up on the wagon, enforcing self discipline, lapsing into debauchery, and crawling back onto that wagon again, but overall I'm winning.  Best shape of my life.

But ... we'll see.

My follow up MRI in December showed something.

Not enough of a something to haul me back under the knife immediately, but enough to warrant a request that I come back in six months and they'll look again. 

I've been able to keep my anxiety reasonably in check, but as the time draws closer to my follow up next month I know it will result in one of three things.  a) holding steady, stay the course, b) cause for concern but let's check in again later or c) get thee to thy neurosurgeon.

I prepare for the worst but hope for the best.  I have been to hell and back and survived before.

I'll keep in touch.

As always ... if you are reading this because you have found me through your own diagnosis  sarahependymoma@gmail.com 

5th Anniversary

The nerve damage continues as it was - no improvement, no decline, just constant numb and tingling feelings from the hips down, with the same nerve damage as when I woke up from surgery five years ago.

I describe year five as the year I bottomed out and bounced back with a vengeance.   In the fall, I found myself 30 lbs overweight, shuffling, hunched over, and missing all semblance of muscle tone everywhere on my body.  I looked in the mirror one day and I was old, frumpy, cranky, achy and unhappy. 

I realized that my 76 year old mother was ROCKING it ! and if I wanted to age like her, then I'd better start to act like her, disability be damned.

While I had acknowledged that I was using my disability as an excuse, I had to decide.  

Not overnight, but slowly I made the changes every professional will tell you you have to make - cut back on the booze, stop eating more than you burn, move your body!   If there is any "fortune" in it, I have the fortune of having a spinal cord injury that is incomplete. I can move.  I can walk, I can row, I can do spin classes, I can use weight machines, I can do crunches.  So what if I can't run, so what if I immediately fall off a fitness ball (and still fall off bar stools!), so what if I can't do 3/4 of the yoga poses. To not move because I'm lazy is to do a disservice to those who can't move at all.

It's taken months of discipline, but I have my pre-surgery-but-still-crippled body back and I feel alive.   Numb, tingly, and shoes still kill me ... but I feel alive.

I turn 50 soon.  Look out mom ... you have competition for who can rock it better :)

Thanks for listening
Sarah

(I managed to permanently lock myself out of the previous email address, so I have a new one.  sarahependymoma@gmail.com)

Four Years Later

Happy 4th surgiversary to me.


For me there has been a huge transition  from year three to year four.  While my physical issues and abilities are all the same as they were at year three, I am closer to mentally coming to terms with my disabilities.  Really, truly, coming to terms with them, not just putting on a happy face and coping for those around me.


I have fewer and fewer days when I am resentful and angry about my issues and the constant neuropathy - the constant pain and tingling in my legs. While my body constantly reminds me and the physical feelings are relentless, my mental health is stronger and I am coping much better.


And, I must admit, my disabilities are not obvious to anyone who isn't looking for it, so I have some interesting conversations ... If I am at a dinner party where the seating arrangements are "cozy" I try to ensure someone I know is seated to my right.  Nothing quite like telling a stranger "oh, I really didn't intend to send you any signals by rubbing my leg up against you all night.  I can't, actually, feel anything, and I didn't know I was doing it".    Usually met with a look of serious scepticism.


I rarely wear skirts anymore ... when you don't know where one of your legs is at any given moment, you end up accidentally doing some serious man-spreading.  "oh, apologies for my movie star impression of showing you what colour panties I am wearing today!"  But hey ... at least I'm wearing them :)


I also stare down my share of people when walking up and down stairs.  The number of people who insist that they MUST walk down the side of the stairs where I am holding the rail is ridiculous  (and don't get me started on how many of them are texting and oblivious to life around them).  So I have learned to:
Stop. 
Step Aside.
Stand Still.
Let them Pass. 
Step back to the rail.  
And continue. 
I am not risking the fall for anyone.  Apologies to anyone behind me (but not really).


I have learned to see the humour in those situations. Not the laugh-at-myself-before-someone-else-does sense of humour, but to see the truly funny side. To explain my situation to those people who are genuine, and to ignore everyone else.


To anyone who has been diagnosed or recently been through the trauma - I can tell you - it gets better.  I swear it does.  My kids have gone off to post-secondary education and their own adult lives, and I accepted a great work transfer half way around the world.


I spent today in Bordeaux, on business. 


Four years on, life is good.

Hello world ...

Three years.  I'm not sure where the time has gone, but it has been just over three years since my surgery.

I was thinking about that as I was driving the car today.  With no proprioception on my right side, I drive with my left foot, and I had that brief, fleeting thought of  "I wonder what it would be like to drive with my real foot".   Yeah.  Common sense prevailed.  No way I'm going to test out whether or not my right foot responds properly to the gas pedal and the brake by hurtling 3 tonnes of killer metal down the street in an effort to "see what it's like".

So, what is it like?

It sucks.  To be honest, I would still trade my old body for my new one, and no amount of telling me "what could have been" will convince me otherwise.  I still miss my stilettos.  I still miss the ability to walk up an down stairs without a handrail.  I still miss not having to focus, all the time, on standing upright. I still miss when my legs didn't talk to me all the time with their incessant neuropathy and complaining.  I still miss the feeling of fit and fabulous that I no longer have.

Is my life normal?  To the outside world, yes. Absolutely.  If you didn't know to look for my disability, you wouldn't know it was there. Do I talk about it?  Almost never. You have to be around me when I can't do something or when my right leg gives out, for me to explain anything to you (which doesn't happen often). Have I adapted my life to my disability?  Absolutely .. your brain is very powerful, and if you are willing to believe you can do anything, it is amazing what you can do. Do I resent having to adapt?  Absolutely.

But, life is what it is, and the rest of my life has been very kind to me.  So I move on. 

This spring I did my first official 5K.  I did a 43:02.  The old me would have laughed out loud at anyone doing a 5K in 43 minutes.  The new me understands that everyone has a story ... that life isn't that simple. The first mile was awful .. mind blowingly, traumatizingly awful.  WTF am I doing, awful.  The second mile was about adapting, getting my head into the game.  The third mile turned into "(s)he is NOT going to finish ahead of me !!   My long buried competitive spirit kicked in.

But that didn't translate into long term change.  I have fought the wallowing, the anger, the resentment, the depression, the "why me", the urge to sleep all day.  Most days I win, some days I don't. 

I can't tell you it's going to be easy for you.  It's not.  I can't tell you you'll win .. I know several people who have let the repercussions of the tumour and the surgery win. All I can tell you is that I fight every day. Still.  If, after three years, I'm still fighting, I don't think the fight will ever end.  It was supposed to get easier, but it didn't.

I'm not lucky, but I'm not unlucky.  Mostly I'm stubborn and determined to "win".  Most days it sucks, but every day I'm glad to be alive.   Special thanks to my neurosurgeon for allowing that to happen.

ps - I'm taking that trip to Machu Picchu I had to miss because of surgery and I will climb those ruins!

Dammit.
:)

Mojo and Forgetting the Pain (But I Still Can't Dance)

523 days. To watch me walk now, you'd never know there is anything wrong.

I gave up the cane during the summer because it was getting in the way of my mojo.  I found that I was wanting to walk faster than I could move the cane, so the cane had to go.  It was a bit of a mental exercise to venture out into the world without it because I knew it was the only signal to the world at large that I have a disability, but I have survived.  I was right to be cautious.  People once again treat me like just any other commuter: GET THE HECK OUT OF MY WAY!  But that's life in a big city, and I'm keeping up just fine.

Stairs are still problematic.  When I'm feeling sassy-confident, I'll try the stairs "no hands", but for the most part I need to hold onto the handrail for both up and down.  And most importantly, I have to be looking at my feet.  I tried carrying a basket of laundry down the stairs the other day - that wasn't such a good plan. I didn't go ass over tea kettle or anything like that, but I couldn't see over the pile of laundry, so I didn't know when my foot was actually on the step.  Lack of touch sensation will do that to you.

The numbness, tingling and quasi-pain.  My 24/7 constant companion. My brain hasn't figured out yet that those signals are imposters, sending false reports that something is wacky and needs to be corrected.  Nothing is wacky ... just the nerve system itself.  I'd love an "off" switch for that, thank you very much.  But with a refusal to be medicated (does such medication even exist?), I'm stuck with the constant ringing of false alarms.   A cool side note ... if I rub my hand on my thigh, the ball of my foot tingles, but unfortunately not in a good way.  A second cool side note ... every now and then I forget about the pain.  Not for long periods of time, but I am starting to have moments when I can focus on something else and my brain blocks out the sensations.  I'm looking forward to having more and more of those moments.

I haven't run (my Sports Med axed that idea), I haven't found a good work/workout/domestic life/rest balance and the tingling drives me crazy, but I am chipping away at my list of things to regain.  I can run across the street if I have to (it's not pretty, but it works), I can balance on one foot, I can walk backwards and I'm not totally shattered by 8pm.

I can't dance yet, but maybe one day I will.

If this surgery has happened to you, please feel free to reach out to me any time at sarahependymoma@gmail.com.  There are so few of us out there, and we can learn so much from each other.

My Surgiversary

Yesterday was my 1st surgiversary.

I figure it's like marriage - the first year is the hardest, then after that you kinda get used to each other. You drive each other crazy sometimes, but overall, you'll keep what you have instead of the alternative.

We had a small celebration last night. Not sure that celebrating the anniversary of your surgery is something that normal people do, but we've already figured out that I aim for "not normal" as often as possible.  It was just the two of us with a quiet dinner, a really, really, really fabulous bottle of wine and a new episode of Big Bang Theory.

Today my new cane arrived. I decided that a black cane was inappropriate for summer and that I wanted something a little more seasonal.  If you have to use a cane ... make it a fabulous accessory!  The other thing I did today was buy a new pair of shoes.  Shoes with a heel.  Well, a 3cm heel that is very wide.  But it's a heel.  Something to wear with summer skirts.  They feel just a little more feminine than loafers and that maybe I'm getting my mojo back.

For the first time in a year I feel like I'm getting "me" back, and life is good again.  The time has gone by, and life's ebbs and flows have evolved to that point where it's time to say goodbye. Time to move on from the year that was May 2012 - May 2013,  to enjoy life and to focus on the future.

So, on this occasion of my surgiversary, I would like to thank those who have supported me, cheered me on, helped me out and given their time and effort to be involved in my recovery. I couldn't have done it without everyone's love and support.  If this surgery has happened to you, please feel free to reach out to me any time at intramedullary.ependymoma@gmail.com.  There are so few of us out there, and we can learn so much from each other.

I have reached the point in my recovery where there is nothing new to say. It's been a wild ride, but understanding that all good things come to an end, this is my final entry.

Until I wear a stiletto.