A Fork in the Road

 

If you’ve been following along this journey for the past couple of years, you know I’ve made some major life changes. Divorced, moved, lost a great deal of weight then faced health challenges, and finally, and quietly, welcomed an amazing man into my life, an event I neither anticipated nor actively pursued. But it happened. Now, sitting here on the first day of the year that will see me turn 50, I have once again felt a calming resolve that this year will be the year I take my journey in a new direction.

As I stood over the stove making breakfast, it was suggested I was going to too much trouble. How confusing…it is in my kitchen where I feel most relaxed. I love to cook and bake, creating a dish simply with flavor is one of my most treasured activities. Being in the kitchen, and in particular, this kitchen, brings back memories of my Grandmothers’ kitchens, so very different in design and function from each other, each teaching me unique culinary skills. On reflection, these hearts of the home were my first classrooms. I learned to read by searching the neatly labeled jars for the correct ingredient to bring to the prep space on the white Hoosier cabinet in my Dad’s mother’s kitchen. Estimation, weights, substitutions, and straight from the farmyard resourcefulness were practiced and perfected around a crackling woodstove and well-worn and oiled farmhouse table, lovingly built by my Mother’s father in his workshop. At times, I am convinced I was born in the wrong era; at heart, I am convinced I am a pioneer, plunked down by happenstance in the heart of my city.

The kitchen is also where I create my candles and other products. There is such satisfaction in turning out a new lip balm or solid lotion that soothes the skin naturally. The creative process pushes me to blend and calculate, inhale and sample each batch, exploring how to make each successive recipe closer to all natural and wholesome. It’s a learning curve. Recently I’ve dragged a small folding chair to the kitchen beside my great-grandmother’s prep table, allowing me a place to rest an aching back or simply pause and reflect with a cup of tea in hand or a pen and journal at the ready to capture thoughts and observations for my novel. It occurs to me as I flip bread in the pan that I seem to be taking on some of the traits and goals of my main character; perhaps I am just realizing that I’ve written her from my subconscious more than I had intended.

So while stirring the sun-dried tomatoes into the translucent onions that formed the base of this morning’s scrambled eggs, a vision of my ideal life began to form in my head, playing out around me like a hologram I am watching from the corner. So many details need to be put onto paper for a reality-check. I’m not prepared to share just yet…to cast these thoughts and dreams out now would be as awkward for me as it would be for me continually post selfies on social media. Fine for others, just not for me. Although it could reasonably be suggested that my writing is my version of a selfie…fair enough. Oh, in time, there will be a “reveal” when there is a stop along my journey I feel is ready to share as a lesson learned. But for this moment, my “share” is this: we are never too old to stand at the fork in the road and chose, by heart, by faith, or wonder, to step with excitement, resolve, and even a touch of fear onto a path that has faint tracks of those whom have traveled before.

Happy travels wherever the road may lead you in 2016!

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Halloween or Thanksgiving?

So yesterday was a typical, fall day in the Old Dominion…bit gray, drizzly off and on… No wait, that would be an average day in the countryside of England. But the air was crisp, bit damp, overcast: my kind of relaxing-with-no-agenda weather. “Bruce” and I were just taking it slow; farmers’ market, coffee and breakfast, visit with the sis and her family, more coffee, wandering aimlessly around a really cool (not so little as it turns out), shop in Chester that showcases various artisans’ wares and second-hand goods. Check out The Lazy Daisy if you’re ever in town. Bring your coffee and take time to peer into every nook and side room; there’s no telling what you will find: from the hair bows in school colors for the cheerleaders in your life to a chicken crate repurposed into a coffee table. It’s all there. For us arsty/crafty folks, places like this are heaven sent! The Tattooed Boy Wonder was home from college, and having fun just hanging with his brother, so of course, Buffalo Chicken pizza was on the menu for dinner, preceded by very manly sandwiches….BLT with cheese. Bacon makes everything better, but I digress.

 

It was on the way to the old ‘hood to pick up this heart-attack inducing pizza that I decided to detour past the old house. Bruce had never seen it, so in the interest of sharing my past, I swung by. Big mistake.

 

I had no idea just how many bad memories were attached to that place, until I drove past it. It was so swift, and so unexpected, that it took every ounce of self-control to not floor it Dukes of Hazard style and get out of that cul-de-sac. Don’t get me wrong; we had some laughs there too. But the majority of experiences there were just depressing. Dark. Stressful. Scary. Like a perpetual monster under your bed in the night. Not just the life events, but the house itself. It wasn’t until after we had closed on the house that we learned a teen had died while living there (not in the house, but in a car accident). Even the high school my boys attended seemed cursed with a high accidental death rate among the student body. The frights of October 31st had nothing on the “cloud of doom” that seemed to hang over that place.

 

I flashed back and remembered that while living there, I experienced the darkest days of my life. My marriage disintegrated, and I sunk into a depression that I didn’t think I’d ever dig my way out of again. Granted, I started to pull myself together there too, but the damage was already done. The house just had “bad juju” as a friend likes to say. In those brief moments as I rolled past the yard and the house that now just seemed quite ugly and cloned (planned community you know…you’re not permitted to show any individuality unless approved by a committee in advance), I lost sight of where I was now, only seeing the darkness that hung over that place.

 

The whole drive back home, my mind flipped through the Rolodex of events as if trying to tally every negative moment that occurred there. I finally crawled in the shower, as if I could wash those painful memories off like dust and mud. As I stood under the steaming water, near to tears, I just sent up a simple prayer of thanks for a reminder of where I was now. I didn’t need to forget those memories, but I needed to lose my grip on their place in my past. I believe I was led past that house again in order to fully appreciate what I do have, just how great are the gifts that I have now. I still struggle with deciding about the path my journey will take, but I am truly blessed to know that I am loved; that by turning my life over to God’s will instead of mine, I can find my way through any challenge. It may be a bumpy path at times to traverse, but I will make progress. My vision for my life’s work is becoming a bit more clear day by day, as I embrace that I am meant to serve and love others through my vocation, my service to my new home church and community, and my relationships with those around me. It has also become critical to me that I grow my writing as well as my side business as these celebrate who I am as an artist: a description of me I have taken a curiously long time to fully embrace. I also know that just as I have rediscovered this side of me that lay buried for too long, I am meant to encourage that gift and passion in others who either lost touch with that part of themselves or who are only just coming to understand that it burns within them as well.

 

This morning as I reread a letter I wrote to “Bruce” recently, I was again reminded of all for which I have to be thankful. My life going forward with him is a story of gratitude and faith, just as gratitude and faith brought him to me. We never know how long we will have someone in our lives, so give thanks for every moment you do have. When the first words you hear in the morning are “Have I told you yet today how much I love you?”, there can be no other choice but to smile and give thanks for all that you have, letting go of what you don’t have or wish you had…because there is nothing else to compare to the gift of love.

Part 2.5: Becoming Me, Almost….

Yes, I know I promised the next part of this series was going to be about how I understand intimacy, but a bit of something happened last night to cause me to get this out first.  Please pardon the interruption and the detour.  And please excuse the coltish awkwardness to follow; I’m terribly out of practice at writing any sort of poetry.

 

He walked the graveled path on bare feet,

Pain impaled the body and mind

Alone and lost in winter’s freeze.

He stopped, howled his anguish and

Tried to soothe the temporary ache

With fleeting relief to the wounds that quickly fell away.

He found, discarded but fair cloth to bind his feet.

And the walk became less strained…

And the path began to yield its light.

A willow’s feathers brushed the ground,

Offering a tender invitation to rest a while.

Pleasant and soothing, but only for a moment

Before offering protection for the continuing journey.

Though the path remained loose and rocky

The stones grew smaller and less threatening,

Further separated from his self

By the gift of the willow’s boughs wrapped tightly ’round his feet.

Color peeked from the undergrowth

As flowers peered their frilly faces upward in encouragement to continue his search.

Taller and brighter grew the petals and

He smiled.

Then, in the garden of the home he left a lifetime ago,

The sweet scent of a flower emerged from a tangle of thorns.

Recognized yet unknown in youth.

Confidently, he pruned away the sharp distractions to exposed the red heart of a rose.

Small. Soft. Delicate yet sturdy on its own straight spine of scattered minute thorns.

He drew his breath at the find,

Bent.

Cupped the bloom to his face in hands folded as if in prayer.

Closed his eyes to bend and drink her scent.

He took nothing from the rose, yet gave her nourishment.

Her spikes lost their threatening stance and

She enveloped him in her beauty and invisible gifts,

While she  grew stronger and brighter.

For he was home,

And she, tended.

 

So what’s wrong with you again?

This is freakishly long…go get something to snack on.  It will still be here when you get back.

I haven’t spoken a great deal about my spondyloarthropathy, but someone new and very special to me in my life was asking “Bruce” what was “wrong” with me, and I thought this was a great time to talk a bit more about it. Don’t take offense with the wording; I’m so blessed to have this person in my life now, but they are new to being Facebook friends with me, and as such, is a bit behind on some of the conversations I’ve had over there about this over the years. I knew exactly what they meant though. Trust me, those with this disorder often ask the same of ourselves…”What IS wrong with me??” Seriously, it can be baffling and confusing to live in a body that can just bop along all happy if somewhat sluggish, then suddenly revolt and decide that excruciating pain and Tin Man impersonations are the order of the day.

The timing of the question was excellent, because thanks to the incoming storms/heavy rain, a friend and I were having a conversation yesterday about how some of us seem to do such a lovely job of predicting the weather more accurately than the local weather guys…when the bones, joints, or muscles start to tighten up when bad weather is coming. Some feel it is the damp, others believe (and science is just starting to back this one), that it is the drop in barometric pressure that triggers the discomfort. The pressure drop seems to get to me the most, and the heat was tough for me to handle before starting the Enbrel. Heat increases inflammation, and inflammation, unchecked, not only increases pain but puts you at greater risk for joint damage. Cold on the other hand, might make my muscles and tendons slower to warm up in the mornings and bit stiff at times during the day, but it is FAR easier on my body. Typically, a slow morning yoga sequence gets me on my way during the cooler months, but honestly, waking up exhausted is so…well…exhausting during the heat and humidity of our Virginia summers.

The sort of spondyloarthropathy the boys and I have (Undifferentiated spondyloarthropathy or USpA for short) affects the connective tissue and not the joints themselves (enthesitis are the points where the tendons and ligaments attach to the bones..this is where we’re affected). It explains why as a child, I would get horrific leg pains…it was the tendons pulling on the growth plates of the bones. Not every pain is “growing pains”, which even the docs said they didn’t think it was when I was a kid. Had them totally stumped. Even into my early 30’s, the rheumatologist said he could only call it a sero-negative arthritis (which means having arthritis without it showing up in the bloodwork), however, the doc I had at the time said flat out it couldn’t be spondyloarthropathy, as it only affected old men. Shame when the medical community doesn’t keep up with their own research; it would have saved me nearly 8 years of suffering and damage needlessly. We’ll skip the entire “how I was finally diagnosed story”, but suffice it to say, I love living in a city with one of the top teaching hospitals in the country!

Unfortunately almost all variations of spondyloarthropathy affect the spine. My lower back is toast, as is my neck, but here’s the thing. I can whinge and moan about it, or I can continue to be proactive and do everything I can to stay healthy and active. My rheumy credits my activity, especially yoga (which I am sorry to say I’ve neglected recently…) with keeping me so mobile, active and flexible. Yes, there is a chance that at any point in time the Enbrel will quit working its magic, and I’ll be left scrambling to find another medication that slows the progression, but in the meanwhile, I am going to do everything I can to take control over this, rather than it taking control over me.  I truly feel for those who are unable to get a handle on this disease medically due to circumstances beyond their immediate control (insurance issues or medical incompetency).

But perhaps I am most concerned for those who have the services and means at their disposal, but who are unable to mentally take charge of the situation. I’ve always been a “strong person” mentally, and at times that has admittedly been my downfall. But whenever I’ve been faced with a crisis, I tend to have a quick cry about it, time and urgency for action permitting, then, I dust myself off, and ask myself what I can do to take control back. Sometimes, having a slight issue with control pays off! I recently got a bit of news about the progression that occurred while I was off the Enbrel for a bit, that sent me briefly over the edge. It was a true relationship test that “Bruce” had to witness me having a pity party for about an hour, but as I’ve come to expect from him now, he was rock-steady, calming, and just asked me the same questions I knew I would have asked myself if he hadn’t beaten me to it:

  1. What exactly did the doctor say?
  2. What should you do now?
  3. What can you control?
  4. What is out of your control?
  5. Then do it.

 

Honestly, how does he know me so well? It’s like we’re soul mates or something (although I know he’s really been placed here right now by God to take care of me and for me to take care of). So when I encounter others who are desperate for this disease to just go away, I have to wonder where their support system is and why they feel so alone and helpless. I try to do what I can to offer my support through our closed Facebook group (closed to protect their identity and our very frank conversations). I decided some time ago that I would not hide this journey with USpA in spite of the risk of discrimination or judgment. Instead, I knew I wanted to lend my ear, heart, and encouragement to others who may be struggling with challenges. You are never truly alone if someone is willing to listen.

But a word of caution is in order. If you are a care-giver/spouse/partner/friend of someone with a chronic illness, you have to set some boundaries with the person you care about. Take time out for yourself and your friends/interests too. Having sat both sides of the caregiver/receiver fence, I understand all too well that you can give until you crash and risk becoming resentful, or even falling ill yourself. Do not feel guilty about taking a break; think of it simply as recharging your batteries so you can be as effective as you possibly can be. “Bruce” has the most wonderful way of asking “What can I do to help your day end so you can relax?” We’ve both been at work, we’re both tired, but he knows that being a woman, I’m going to keep going after every little thing I see that wants doing until it’s done, or I keel over, whichever comes first. What might take me two hours at the end of the day, takes the pair of us about 30 minutes, tops. How cool is that?! So caregivers, ask, in novel ways as Bruce has, how you can help without making your partner feel dependent. That’s critical, as few people enjoy feeling helpless.

For the person on the receiving end of the help, I’ve got some advice for you as well. Don’t be a wet rag all the damn time. Yes, you are faced with challenges that perhaps your caregiver/partner will never quite understand, and perhaps you are living with obscene amounts of pain, but guess what? Everyone has a cross to bear. Practice being thankful and thanking your partner. You don’t have to literally say “Thank you” at every little thing they do, but a smile, a hand on the arm, a back scratch, giving up control of the remote, being okay with a less than Martha Stewart perfect house, appreciating efforts at cooking or cleaning up…these all let your partner know you appreciate what they do. Laugh. Once in a while, force yourself to do something you don’t feel like doing. Sure, you might be exhausted at the end, but you know what? Take an extra dose of meds before you go, take a nap before or after, but especially have a frank discussion about the possibility of needing to take breaks or even leave early. I honestly can’t tell you the number of times I’ve gone ahead and pushed myself, and then ended up having a blast. I have gotten more intuitive though about knowing when I really do need to back out of something, and I’ve also learned another very important lesson. Forgive myself for having to say no. I think though that since that doesn’t happen very often, my friends and family have gotten the message that if I do say no, it’s a rough day/week whatever, and that they just need to let me recoup a bit so I can be there for when I am needed as well. And here is another important tip in my opinion…think before you open your mouth. What is coming out? Is it constant complaints or do you temper the Grumpy Cat days with moments of positivity? If you’re more grouch than grinning, then force yourself to do/say something positive. It supposedly takes 21 days to form a new habit, but trust me, it doesn’t take long before you start to feel the benefits of a more positive outlook, and you will be less likely to drive your support system away. It is very stressful, confusing and scary to be a caregiver/partner to someone with a chronic illness; it is very easy to walk away.  It is extremely difficult to stay, so don’t for one moment take for granted those who do, and forgive those who try but have to leave in the end.  Not everyone is cut out for the task no more than everyone is capable of hiking the Himalayas….it takes a certain mindset, heart, and fortitude to do it. Yes, I completely understand that there may always be someone(s) in your life who just won’t get it. Decide if they are worth your energy to worry about. Think about it.

 

So I hope this has been a bit helpful, hopefully quite informative, and I wish you well with whatever you may be facing in your own life. Please don’t hesitate to share your thoughts here. No flame wars though…I don’t tolerate personal assaults on anyone, myself included. Ain’t nobody got time fo dat!