Thoughts from the wee hours…

Living with a dog with a small bladder is like having a newborn again. You sleep in short chunks with multiple mid-night wakings. After having just climbed back in bed after yet another late night trip downstairs with Molly, I have so many random thoughts floating around…

• Note to self: I sleep better if I claim my half of the bed from an Equatorial perspective (top half) rather than a meridian (right half) perspective. At least with the dogs… not sure about the pilot. 😆 These days when the Munchkin is gone to his dad’s, I end up with the Pug and the Bulldog in bed with me, while the lab is in the dog bed in the floor next to me. Did I mention they snore? They all snore…

• I am so behind on writing and homework right now it’s not funny… and I’m having so much trouble forcing myself to actually work. But the end of semester looms… and panic is starting to become a daily feeling.

• I miss my pilot. The worst part of this time in our airline life is not knowing when I’ll see him again. He’s working so hard to get through this challenging point in his career… and I’m so proud of him. But it’s hard. For both of us.

• My mother is so freaking amazing… she cleaned and reorganized my office this weekend and I can actually work at my desk now.

• There’s something really special, after having been blessed with a best friend for 22 years, to having a relationship with her daughter.

• The money for the semester never seems to last through the whole semester. I think one thing I miss about working, besides having a social life, is just knowing there’s a paycheck coming.

• It’s only 38 days until Rocky Mountain Christmas vacation! Hooray! I’m so looking forward to Christmas with both parents and my sister. It will be good to be away from Indiana over the holiday, so close on the heels of losing my grandpa.

• I don’t like having a friend living with chronic pain… but I do appreciate having someone who understands where I live who I can text at any hour to commiserate. My sweet friend in Georgia is dealing with a mess of back issues. I hate hearing how she hurts, how the pain is getting to her emotionally. But it is so comforting to be able to turn to someone who gets what it’s like to live this illness life, who knows how it feels to feel like a burden to others, who really gets how frustrating this can be and how much you just want to go back to “normal.”

• I had grand intentions on doing the “30 days of Thanks” thing this year… but lately I’m struggling to find the good. Not that I’m not very blessed and incredibly “wealthy” by so many standards. I have a home, a family, a beautiful child, an education, food to eat… but as I fight my own body every day, sometimes just to get out of bed, you get trapped in this internal place where it’s very hard to get outside oneself and recognize all that is there.

• Hypocortisolism is no joke. At a time when my pain is relatively well-managed, nothing is more infuriating than having to rest (or nap) after just a few hours… and on the days I force myself to get up and go all day, to then have to spend the entire next day (or more) recovering. I feel like I’m sleeping my life away these days, and I hate it. Thank God for my momma, who is helping me keep it together for my Munchkin. I’ll be glad when my new treatment starts working, in the hope that I can stay awake for more than a few hours at a time and maybe start to feel human again.

With that, I think I’ll try to catch a couple more hours sleep before class… hopefully…

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Up on the Roof

These days I find I have less patience for big crowds. If I’m being honest, I think it is related to my fibro, and being afraid of getting into a situation where I’m in pain and stuck… I should probably work on that. But it’s the Fourth of July, and I promised my Munchkin fireworks. 

Now, we live less than 3 miles from the local high school where tonight’s show was happening. We also live up on top of one of the highest hills in the area. So I suddenly had an idea: Can we see them from the house?! I wonder… 

I ran the idea past the Munchkin… who replied, “Can we watch them from the roof?” After a moment of thought, I said, “Why not?” 

Now, before you all think I’ve lost my mind… We have a split-level home, and the roof is actually just one step over the railing from the second-story deck in the back. And it’s not steep. So at five minutes before showtime, we doused ourselves in insect repellent, gathered an old blanket and a bag of chips, and headed upstairs. 

I should note here that about two steps onto the roof was when I remembered how terrified I am of heights. Specifically, FALLING from them. Which is why, even with an easily accessible roof, my gutters are sadly neglected. I can be in a plane, I can admire a gaze across the skyline from a 48th floor window, and I adore balconies. But in any situation where I feel like I could fall, I freeze up. The Munchkin wanted to go higher onto the very top level of the roof. It’s literally one step up, with only about a 5/12 pitch. I’d be nowhere near the edge of the house. And it was closer to the end of the house nearest the high school. It would be the best vantage point if we were going to see anything. 

But I couldn’t do it. 

Luckily, just then a neighbor sent up a shell a couple blocks away that could be seen perfectly from the end where we were. Thank you, sweet baby Jesus, for literal signs from heaven! I gulped down a lump in my throat, ventured to the apex, and said “Let’s just sit right here.” 

As it turns out, we were either too far away, or it was too hazy, to see any of the town fireworks from our roof. It had rained just a couple hours earlier, and everything was still damp. I could make out distant flashes and the low rumble of echoing explosions, but that was it. Fortunately, some neighbors due south of the house were setting off some pretty decent ones, so we sat up there watching for about 45 minutes. 

During that time in the dark, my son’s mind was going a million miles an hour. Commenting on every noise we heard, every shape he saw in the scattered clouds, every sparkling mortar shell that flew into the sky. He made up a song about sitting on the roof eating tortilla chips. We even FaceTimed my sister, using one phone to talk and another to light our faces in the night. 

Of course, the Munchkin wanted me to keep taking pictures. It’s what we do. But armed with only my iPhone? We weren’t gonna get much. My hair was a mess. But we had two phones for light, and a big moon, so why not? In between bursts of color in the sky down the street, I snapped a couple shots: 

As the fireworks started to slow down, my son snuggled up against me and said, “Isn’t this a lovely night?” 

Yes, baby… it’s perfect. I hope you remember it forever, because I’m certain I will. 

The Art – and Pain – of Compromise

An eloquent man of whom I’m a pretty big fan once said, “No democracy works without compromise.” When he said it, he was referring to American politics – a touchy subject that I’m not going to touch in this post with a 30-foot steel rod. But the idea of democracy, I think, can be applied to other situations in life, as can diplomacy. The life skill of “being diplomatic” was one which my grandmother prided herself on, and one she felt very important to pass on to her children and grandchildren… the art of getting along with others, even when you may not want to. Continue reading

What You Don’t Know…

Some of you may have noticed that I haven’t written a blog post in months.

Not really a big deal, right? Life gets busy. Other things take priority. That’s not that remarkable.

Yes, I’m a working parent. Yes, I’m a special needs mom. A single mom. And I am a person living with a chronic illness. But none of these facts by themselves is truly extraordinary. There are thousands of people out there who are single parents, or working parents, or are raising special kids, or live with ongoing health challenges.

But there are some things you don’t know.

So, I’m going to let you in on a little secret.

It’s something I’ve been trying to pretend wasn’t there. It’s something that I’ve tried to be okay with. It’s something that I feel guilty for admitting, because I have much to be grateful for, and so I have held this hand close to the vest. But there are some days when keeping the secret becomes a shrieking cacophony inside my soul, and I feel like it may drown me. So I’m going to take a leap of faith and just put it out there…

My life is incredibly lonely right now.

What you don’t know… is that, despite being around people, and feeling overwhelmed with What you don't know...busyness most of the time, I am so incredibly isolated that at times I think my chest may explode.

What you don’t know… is that I got really sick last semester. So sick that I had to withdraw from school temporarily about half-way through the semester. And not just because of the fibromyalgia.

What you don’t know… is that last March, I was diagnosed with Type 16 HPV, the form of the virus that is the most high-risk for cervical cancer, and that I had to have a biopsy. And that even while that biopsy came back mostly okay, I will remain at high risk for developing cervical cancer for some time… and there’s no way to tell if my body will fight off the virus like most people’s do or not.

What you don’t know… is that because of how sick and critically exhausted I had become, I was essentially put on “home rest” for four months. I spent my whole spring and summer at home, mostly alone. For the first time in years, I had all the time in the world to spend with friends and family… but I didn’t get to do hardly anything.

What you don’t know… is that – after I spent about a month doing not much more than sleeping – I still had a long hard road to walk to learn how to balance my days. I had to learn how to not steal energy from tomorrow for today. Or, if I do, I have to plan ahead, because borrowing an advance on the next day’s energy means a day of recovery afterward. And I’m still learning.

What you don’t know… is that, even with all that free time, I felt more isolated than ever. I was at home while the world moved on without me. And now I didn’t even have the social outlet of a job. On top of that, my FM/CFS and thyroid issues make me really intolerant of heat. So with no income and everyone I knew working, I spent the entire summer indoors with my 11-year-old, too tired to do much of anything and getting really depressed.

See, here’s the thing:

A thirty-something-year-old undergrad with a kid and a mortgage?
She doesn’t really make friends at school.
The people I meet that are my age are usually my professors, who can’t really be my friends right now. Other students my age are grad students – I know they exist (in theory) but I’m not on their level or in their classes.

And all my friends?

They’re raising their own families.
They’re spending their weekends at band tournaments and corn mazes and soccer games.
They’re NOT spending their weekends recovering with a body that doesn’t want to cooperate with life.
I don’t begrudge them that. I really don’t.
But I miss that life. I miss THEM.

And it’s not just missing them.

Because the other thing you don’t know?

It’s that NOBODY CALLS.

My phone rarely rings these days. No one texts me to ask how I’m doing. No one asks a single question about how treatment is going or how I’m managing my pain or how school is going or what’s new with the Munchkin’s therapies (and I don’t mention it, because I feel guilty). No one offers to make plans to get together anymore.

Look, I get it… I’d probably say I was busy.

Maybe I was busy one time too many.

But despite having lived in this town for a dozen years now, I have very few friends here.

Oh, I *know* people.
You don’t work at the big places I’ve worked or volunteer for the organizations for which I’ve volunteered without knowing people. Meeting people.

But I guess what I didn’t realize along the way was that I didn’t really make many new friends… not the kind of friends who call just to ask how things are going.

I have friends like that. Or, I did.
Back in my hometown.
It’s funny… I’ve long joked that I grew up “30 minutes and a whole world away” from here. I always meant it culturally. But now it seems to have taken on a new meaning.

The last time “The Gang” (the core group of people I’ve called my “extra family” for around 20 years) got together was over a year ago, and we weren’t even all there.
For some of them, it’s been more like two years.

I haven’t had a night with my girlfriends in over a year. The last time we had something planned, it got called off at the last minute due to someone’s significant other making other plans for her.
And yes – it was for a good reason. Really, it was.
But I was hurt.
And I didn’t say anything.

I didn’t say anything because not only was it really a good reason, but because ever since I was diagnosed with FM/CFS I feel like all I ever do is talk about my pain, and/or ask for help.
Ask and ask and ask, without being able to give back.

Combined FM/CFS is a selfish condition.
It takes. It takes from me, it takes from my son; it took away my old identity.
I’ve been working with a therapist for over a year now trying to rediscover who I am, after the identity and self-worth I had built on my professional abilities was ripped out of my hands.

I had to start over.

On the one hand, I’m proud of myself. I fought my way out of a bout with depression that hardly anyone even noticed. I’ve been learning a therapeutic technique to manage my conditions called pacing, which has given me back some semblance of normal. I took a class in mindfulness over the summer, where I began to learn how to meditate and incorporate mindfulness practices into my days, since stress has an intense physiological impact on my body. I’ve been learning to be self-compassionate for the days when my body can’t accomplish everything my mind sets out to do.

But I’m still lonely.

Part of me knows that I made this choice. That going back to school when the road forked was the right thing to do. For now, this is my life.

I just had no idea that I would be so emotionally isolated.

I didn’t know that I would miss all of my surrogate nieces and nephews growing up. I didn’t know that it would be so hard. I didn’t know that I would often feel like no one understands where I am right now. This life is busy, and it’s lonely. And while I know that every single day puts me one step closer to a degree and the return to a somewhat normal social life, I just can’t seem to bring myself to beg for company at the last minute on those rare days when I finally figure out I’ve got some spare time.

So listen…

I’m not putting this out here as a guilt trip. More than ever, I’ve been leaning on my parents, and my little sister (who has stepped up to the plate in a big way). I’m learning to feel less guilty about asking my family and my boyfriend for help. And just like always, I will figure things out and get through this.

What I want to put out there – not just for my people, but for everyone – is this:
There are people in your life who need you.
Friendships have to be reciprocated to be maintained.
Life will always get in the way if we let it… work, kids, spouses, houses… it can all make us too busy forever, until one day we look up and realize we aren’t really friends with our friends anymore.
I know, because I’m guilty, too.

But that is a choice.

One of these days, I won’t be an undergrad anymore. One day soon, I will graduate, and I can go back to doing the things I want and spending time with the people I love. One day, not so far from now, I can – and happily will – reclaim my role as Cruise Director, the one who makes things happen and seeks after those friendships no matter how long it takes or how distant we become.

Because those things matter.

Because I treasure being able to say that I have friends that I’ve had for twenty years or longer. Because in a time when the world is moving faster than the speed of light, I want to know that slow summer nights by the lake filled with the sounds of laughter and guitars is still possible.

Right now, the leaves are turning. The time for nights at the lake is coming to a close for the year, and we’re getting dangerously close to the holidays, which means the window of opportunity for friendly get-togethers is closing for 2016. We share memes on social media saying we need to get together and that we miss each other, but these days that’s usually as far as it goes.

I understand.

I do. We are all busy. Yes, I’m in school, but my friends have jobs and children and houses and obligations, too. I’m not the only one who hitched a ride on a Busy Boat and now can’t figure out how to drop the anchor and float a while. It’s hard.

So, I guess all I’m really saying here is:

I miss you all. And it would be really nice if you wanted to call… I promise I’ll try to answer.

Searching for a Silent Night…

For several days, I’ve had a few bars of a song stuck in my head. Problem was, I couldn’t get quite enough of it to put a name to. But there it was… just a few bars of a chorus, drifting into my thoughts as I went about my days.

All through the errands.
Through the stressing over the Christmas gifts.
Through the worrying over finals and my sister and visitation schedules and HDMI cables and postal delivery times.
Through juggling phone calls with the Munchkin’s school and health insurance companies and pharmacies and doctor’s offices and banks and the mortgage company.
Through laundry and bill-paying and house-cleaning and therapy appointments.
Through the daily efforts poured into shoving aside the dark December memories that tried to push their way to the forefront.

All the while, I was tangled in an internal tug-of-war… an extension of my ongoing existential discord between allowing myself to rest when needed, and feeling guilty over all the things that went undone. Continue reading

When a teacher passes on

Sometimes you meet someone who leaves an indelible mark on your life. Who teaches you something you carry with you forever.

I’ve been blessed in my life to have met several such teachers. One of which was my childhood priest, Father Ron.

I’ll never forget the first time I laid eyes on him… this larger-than-life Italian who drove into our small town on a Harley, wearing a leather jacket and smoking a pipe, shaking up everyone’s notion of what an Episcopal priest was “supposed” to look like. I was 7 years old… and his Pittsburgh-Italian accent, salt-and-pepper hair, love of photography, and complexity fascinated me even then. I used to cherish afternoons spent playing with his boys (the eldest the same age as me, the youngest the same age as my little sister) at the rectory, Saturday afternoons working around the parish hall, and spaghetti pitch-in dinners, watching him standing guard over his own made-from-scratch sauce until it was ‘perfecto’.

As I got older, I began to learn that behind that tough exterior was a deep and intelligent mind, a soul who truly understood both the struggles of humanity and the quest to connect to something higher. He taught me to question everything, to never accept the teachings of man without weighing it against what you know, the wisdom of your teachers, and the stirrings of that inner voice. He was a man who had stared hell in the face and carried on anyway… he was tenacious and compassionate. I have carried his lessons with me since childhood. Even now that I’m grown, he never seemed to change. He always seemed invincible. During my last visit, though too long ago, left me smiling at how he never changes… relaxed, sharp-witted, opinionated as ever. I have been trying to find some time to go down and visit again, to introduce Munchkin to the giant who had such an impact on me.

Sadly, Ron passed away from this world this week. As much as I am saddened, I know that his family is heartbroken. He was a loving father, husband, and grandpa. He was a wonderful teacher, listener, and friend… and the world is a little bit darker without him. Those of us who were lucky enough to have crossed paths with him are forever changed.

When someone who has such an impact on our lives passes on… when someone we felt was impervious becomes mortal… it leaves a hole. It doesn’t matter that as my life became busier and I moved away from my hometown that I no longer had the time to sit talking with him for hours. I could walk in the door at any time and it would feel like no time had passed at all. He was just that kind of guy. 

Ironically, I just ran into his youngest son out of the blue the other day. We talked for quite a while, reminiscing about our childhood memories, shadows of a time that was much easier… before tragedy struck their family more than once, before my parents divorced, before any of us grew up and had our children and started our own lives. We smiled, laughing over how Ron (now long-retired from the priesthood) never changed. He was as loud and opinionated and funny and stubborn as ever. A giant. Invincible. I told him to tell his dad I said hi, and that Munchkin and I would be down to visit soon. 

But sometimes ‘soon’ isn’t soon enough. 

Ron wasn’t one to dwell on “woulda, coulda, shoulda”. He would tell me not to be sorry for one second that I didn’t get to see him one more time. The last time we talked he told me how proud he was of me… of my photography (which meant a lot coming from him, a professional photographer before he became a priest), and of the way I was building a life for myself and raising my son. I guess that’s all I need to know, to carry in my heart. 

Still… I know that any time I catch the scent of pipe tobacco and freshly-stewing spaghetti sauce… I will think of him.

Rest easy, rabbi. You are loved.
*Vita mutatur, non tollitur.*

Me & Father Ron, when I graduated from high school. May 1999

Me & Father Ron, when I graduated from high school. May 1999