Rolling in the Soup...

tl:dr - Tara has a chair and she’s happy about it. 

Rolling in the Soup

Some 30 odd years ago we were sailing along one day en route from Hawaii to Sitka, Alaska when there was a jolt to the hull - Wanderlust had hit something. The dolphins that had been surfing in our bow wake scattered - we looked in our wake and couldn’t figure out what had hit the boat.  It was only when we noticed that our sails were losing their wind that we discovered we’d sustained damage.  

As best we can guess, a dolphin had hit the “dolphin striker” (ironic because despite its name, it’s not actually designed to strike anything, it’s a part of the structural integrity of the rig), a roughly 4’ metal pole that supports the bowsprit of the boat by using oppositional tension against the immense pressure placed on it by the Jib (the big sail at the front).  For those of you that I’ve lost with these nautical terms, it’s a load-bearing wall. Take it out and everything falls.  

As best we can guess a dolphin misjudged their leap (something that only happened once in our many years of sailing and hundreds of encounters with these beautiful creatures) and struck with such force that the striker bent (it was roughly 2.5” stainless steel - so that’s some pretty intense force).  Even a few millimeters out of true and the force of the wind in the sail pulling it upward would bend it further, which is what was happening now… we were “rolling in the soup” as my dad liked to say - sails dropped, swells rolling under us. It was serious damage.  

We were in the middle of the ocean; hundreds, if not thousands of miles from land.  No cell coverage friends, a VHF radio that could reach a ship should they happen to pass close enough, but because no sailor likes getting mowed down by a freighter in the dark of night our path meant we’d seen but one ship in our 10+ days at sea.  

There were a lot of choices we could have made that day, we could have done without that particular sail, but the dolphin striker it not only supported the jib but was also the headstay that kept all the masts standing. In the winds we had, we could probably continue to move forward, but if winds picked up we could lose our whole rig. A sailboat with no sails is but a fancy bathtub once the fuel tank is empty (in case you’re wondering, fuel tanks on sailboats are usually big enough to get you in and out of the harbour - because we have sails, we use our space for more important things like water and whiskey and food). 

So many options of what to do: 

1. Drink. Always an option for sailors in a crisis.
2. Hobble along and ignore it. Hope the winds stayed moderate.  Downside, might lose rig and crew would soon all be nauseous and miserable from the rolling that occurs without headsails.  
3. Fix it. My dad was an engineer, and for those of you that call me MacGyver he was the original deal (he lived the MacGyver life before MacGyver even hit the airwaves!). 

He headed below, to what he fondly referred to as the “Lumber Yard” (a stash of timbers and assorted structural elements he stored under one of the bunks. Yes, it made it a little lumpy, but man were we grateful for it that day.  The two strongest timbers he could find, several large hose clamps and some duct tape (obviously) to hold everything in place while he got the hose clamps secured.

A short time later he completed the task with the help of his trusty crew.  There might have also been a scotch in there somewhere along the way.  He never considered option 2. 

Safety and the journey were everything, in that order.  

My dad never let anything stand in the way of adventure.  Not damage, not illness, not finances, not naysayers, nothing… and if I learned two things from my dad it was:

1. If you have no adventure, you might as well stop living. 
2. How to deal with roadblocks in all their forms.  

Whether they be dolphin inflicted damage, storms, opposition, injury even illness. He left this mortal coil doing everything in his power to try to resolve his own illness (that was standing in the way of adventure). He taught me through his life and passion that you get back up and kept going. You dealt with the mother effin problem (he would never have shied away from the f-bomb, but I try to keep things PG here).  You cursed a little (or a lot), you drank a little (or a lot) but you KEPT going.  When all was said and done, if nothing else you’d have great tales to tell. 

My Journey

I’ve forgotten that lesson for a while… probably because my problem didn’t hit hard with the thud of a dolphin with poor echolocation.  It happened with the gentleness of a thousand little waves lapping over the edge until I was tiring... treading water, gasping for air. The resulting damage has been immeasurably greater, I am facing drowning if I don’t get out this situation’s equivalent of hose clamps and timbers. Drowning is not an adventure, it’s the end of the journey.

Yes, friends, I’m talking about my health. There has most certainly been cursing. And wallowing in the soup. There’s been a LOT of hobbling along and ignoring.  I don’t really think that last part would make my dad proud, but somehow I think he’d understand. He too battled health demons and at times tried to pretend they didn’t exist. I come by this part honestly. 

This post is not about wallowing or drinking or ignoring. It’s about safety and the journey - because they are everything. It’s about sharing my joy, to share a tiny (or perhaps giant) return to who I am. A return to my heart as an adventurer.  A return to the girl that shares her dad’s values about safety and finding new places to be awestruck by. About sharing those places and spaces with people I love. Of being fiercely independent. Of accepting help, but also about carrying my own load to the degree that I can.

This post is to share joy. A little glimpse at my journey, that has not always been joyous, but today it is JOY! 

What the WHAT happened?!

I looked at my exercise tracker on my iPhone recently, 3 years ago my daily average steps were 12.2K, two years ago it was down to 4K, now it’s under a thousand. This is not because I suddenly decided Netflix and hohos were a good lifestyle choice. But because some awful, crazy disease is (attempting) to take me down.  

Y’all have known me long enough to know I’ve always been a bigger, but very active girl. There is not much that slows me down. In 2016 I was still walking 5K at least 3-4 times a week, I mean it wasn’t running or marathons but it was outside and rejuvenating.  My blood pressure and cholesterol were low and within normal range. My mental health was reasonably stable (as stable as someone with a lifetime diagnosis will ever be!). 

But my body developed a daily “expiry number” sort of a best before X# of steps, the severity of passing that number depended on a lot of things. Stress and weather lowered the number for sure. Instead of trying to “top my step goal” I was now using this app to actively track and ration my steps - do I have enough to stop for groceries? Do I have enough to walk the dog? I'd sometimes intentionally take a super quiet day - 400ish steps so I could go for a walk with a friend... but If I pushed past that invisible line my body would go into a state of shock, weakness, muscle spasms, intense pain, fatigue that doesn’t resolve with rest. It felt like I used to feel after I had pushed myself in a workout: sore and jello-legged but it didn’t resolve with a soak in the tub and a rest day. There’s no relief except time, and the amount of time has increased drastically in recent months.  It started taking days to recover, or longer. The opposite of what normally happens, instead of how pushing your limits usually increases fitness and strength, it took a sledgehammer to me.  

My legs would give out unexpectedly, usually as I was attempting to stand up, or occasionally on stairs where a little more muscle is needed than a flat surface. Most often getting out of the car, I’d collapse into the driveway, or hang on to the car for dear life, willing my legs and brain to cooperate with each other. Yes, less than an hour before I’d walked to the car with no issues. 

When I lived in White Rock, during Cadence’s first litter I started sleeping on the couch downstairs, this became my second bed long after the puppies were gone because most nights I wouldn’t be able to get to my bedroom, up a full flight of stairs.  This was the beginning.  

Now, I’m averaging 900 steps a day before my legs give out.  I have better and worse days, but most days involve a cane at some point, whether it’s in the morning or to help me get into the house railing on one side, cane on the other.  Some days I need support for every step I take.  My legs can’t do it independently.  If you have a tracker, check out when you hit 900 steps, it’s NOTHING.  You likely hit it before noon, if not 9am. It’s not a lot, trips to the bathroom, standing to make dinner, maybe a trip out to the car and back. 

I made some big life choices, most of them got attributed to other things. “I’m too busy” was easier to say than “I’m sick” or “I’m in pain”.  I needed to use those words, not because I was lying to you, but because I was lying to me. 

I left Spryberry and daily contact with humans I love there. I left the training department at PADS and with it teaching (which is one of my greatest loves) to reduce my stress load but also the amount of standing. I left teaching at SFU. I left the home I loved in White Rock to move to North Delta (to shorten my days and my commute). I gave up breeder caretaking. I gave up raising baby superheroes. 

Some of these decisions had silver linings. All of them were heart-wrenchingly painful and some amongst the hardest of my life. 

But they were all RIGHT decisions. 

My life is not what it once was.  Invites for anything that involves standing or walking are often met with “oh sorry, I already have plans” (with Netflix - that counts right?) because the only thing worse than having your legs fail you is having it happen in front of other people.  

I attended a Chor Leoni concert last year, as always it was breathtaking. It was a different kind of event, think a cocktail party with world-class vocals.  There was seating for about 1/4 of the people in attendance, particularly for the seniors and those with disabilities - the rest stood, lining the railings floors above the choir.  Even with the railing, I couldn’t do it.  I found a bench, shortly after I was asked if I could give it up for a senior who needed it. I did. I don’t look broken or old (I mean that last part is a win!)... anything I would say at that moment would have come across selfish and unkind.

Finally, I resigned myself to sitting on one of the flights of stairs where I could still hear, but without falling. It was okay until I had to leave, people were coming down the stairs, I tried and couldn’t get up.  I had gotten myself down to the step using the support of the railing, but the amount of support needed to let gravity work vs. to work against gravity are very different. A dear friend headed down the stairs, relief washed over me as he offered me his arm. He knew. 

A few weeks ago I had the opportunity to go for a walk with my beloved Red and her new Mom Amanda, it wasn’t a long or a hard walk, an easy stroll through the forest on a day when I felt particularly good.  In the moment I felt immensely grateful to hang out with them both and I felt fine.  I got home that night and I couldn’t get out of my vehicle, 6 days later I was still not fully recovered. The downtime doesn't just leave me in pain, it affects my mental state dramatically, I am trapped.

I realized in many ways, my coping mechanism became suggesting “let’s have dinner” or “grab a coffee” or “let’s go to a movie” (note all are sitting activities) instead of the hike I really want.  But it was a way of pretending my reality wasn’t real. COVID has taken those suggestions away from me, and as a result, I’m isolated in a way I’ve never experienced and never want to wish on anyone.  Never being outside, being isolated from the people you love… it’s also debilitating mentally and that adds stress to a stress exacerbated condition.

So you might ask, what is wrong.  That is a great question.  I have a diagnosis of Fibromyalgia, but THIS is not that.

Short answer, I don’t really know, nor do my doctors, there are lesions on my brain that look different than the kind associated with MS, but “maybe MS… or maybe not, we’re not sure. We’re also not sure what it could be…it’s a bit of a mystery”.  There are issues with the nerves in my legs and how they communicate with my brain, but they aren’t sure why or if it’s responsible for all of it.  There’s also a ton of inflammation in general, but the rheumatologist is trying to understand where it’s coming from (which hopefully will lead to how to fix it). There are a bunch of other not so great symptoms that I won’t get into that are terribly debilitating (most of them are outside of the Fibro diagnosis), but there are as of yet, no concrete answers. 

I have a great doctor, a crappy neurologist (and a new one in sight that holds a little more promise), a fabulous rheumatologist (finally!) and more tests than I’ve been able to keep track of (and more on the way).  That being said, we’re 4+ years in and things are getting worse rapidly.  I don’t know if the future will hold a diagnosis or treatment or not. What I know is I’m tired of “rolling in the soup”.  If things get better, I’ll be the first to pitch the 2x4’s and hose clamps, but until then…

Meet Pete

My dad always said he wished someone would use “For Pete’s Sake” in a positive way)! So Dad, I’m gonna say, I’ve had enough, so for Pete’s sake I’m gonna get on with it (and you’re welcome!). 

Pete will accompany me when I need him and be there when I’m having a particularly tough day. 

Some times he’ll stay in the car because I don’t need him. But when I do, he’ll do many of the things my dad did for me, get me great places, keep me safe and keep the adventures happening. Most importantly he will allow me to say yes.  

• Yes to being able to take my dog for a walk instead of relying on others or cutting food (no dog likes kibbs reductions!)
• Yes to long walks along the dyke, with the sun on my face or the rain dripping down my neck.  
• Yes to night’s out that involve long periods of standing that would make them otherwise impossible. 
• Yes to PADS events I love without hiding back stage (or borrowing a chair that doesn’t fit me well and that I don’t feel comfortable in). 
• Yes to joining friends on bike rides or walks or runs (this puppy motors!!).
• Yes to going for dinner in White Rock and a walk afterwards to watch the sunset.  

I had a lot of feelings about Pete (before he was real and had a name), and some might wonder why the public post and the damned crazy overshare?!

Because I saw it in faces of those that know me well and those that don’t - confusion, pity, worry, concern, judgment, etc - all in the few hours I spent in a chair that was offered to me when I was having a particularly bad flare up at the same time as PADS grad last year.  

I see the same look when I show up somewhere with a cane, I’m 45 years old, people get that worried face. For those of you that expressed concern - thank you, I really do know your heart and that it comes from a really good place. That doesn't make it any less HARD. 

It’s the thing that has probably held me back the most, was facing all those feelings in other people (my own are more than enough). 

I really am ok with people knowing my story, but quite frankly I don’t want to tell it every day. Some days are too hard, I don’t want to constantly ask myself if the person I’m going to see knows and am I up to sharing, I don’t want to not use the chair because I’m not feeling up to sharing (because the need and the not feeling up to sharing usually coincide) I just want to load Pete in the car and go and enjoy the freedom from fear and pain he offers. 

It’s always an emotional story for me, even the happy parts.  So, I want to be in control of it to the degree I can. So I’m penning this at my computer on a day when my head is in a good space to do it. I just returned from my very first solo walk with Cadence on the beautiful green space behind my house, that I’ve NOT ONCE enjoyed since I moved in (other than to look at and enjoy the fragrance of the beautiful lilacs from my deck). I can’t stop smiling, Cadey is exhausted and happy at my feet and it didn’t take anyone else to give her (or me) that joy. 

If this post can minimize the worry, concerns, and questions for my people, and helps you to see what a gift Pete is in my world… it makes my life just a little simpler.  

And this right here, makes me grin from ear to ear!!

************

Finally, I want to thank the humans that helped me with this journey…their numbers are many but their combined help, support,  knowledge, insight and encouragement was even greater. Sarah, Jeff, Carol Ann, Ric, Emma, Cathy, Tessa, Laura & Mom... you all made this so much easier than it could have been. 

Finally, my amazing son who texted me at 8am (after his long night shift) to say “you might not be awake yet, but when you are come outside” where he presented me with the unasked for installed Firefly, adjusted, tuned up and ready to roll Pete. You carry your Poppa's heart around on this earth. AND...you absolutely made my day!!!