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. 

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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.

Random Saturday morning musings…

Well, technically, it is afternoon now. But I was up late, the Munchkin isn’t home, and I didn’t have any plans today. So I slept in, and I’ve been trying to get motivated to get some things done, but I’m distracted. Figured I’d jot down some quick thoughts to try to clear my head…

  • I know I said I was going to take a break from dating. I meant it. But just around the time I said it, I met someone online. A pilot. A cute one. (Who also speaks fluent French… Tais-toi, mon cœur!) But we were both in very transitional places in life back then, so we said we’d just chat and be friends. I didn’t give it much credence.But then we kept talking. And started to get to know each other. This has been going on for 3 months now. Last night, we spoke on the phone for the first time… and ended up talking for almost 3 hours.

    I’m not really sure what’s going on with that. He seems like a great guy, and we seem to have connected in a fairly uncommon way. But there are obstacles and some very large unknowns. And as of yesterday, his course seems to have changed and is now even more uncertain. So I don’t know what is going to happen or how to feel about it. On the one hand, I have always been one that is open to the possibility of the improbable. On the other, the cold of reality has thrown ice water on my rhapsodic imagination more times than I care to admit. Do I dare to hope that one innocent conversation be life-altering?

  • About a week ago, one of my very best friends did something that I never would have imagined possible: He chickened out.

    He took the coward’s way out of telling me something to my face. We were together, in person, for the entire afternoon on Sunday, and yet he chose to tell my by text message on Monday. And the thing is, it’s GOOD NEWS for him. A good thing. There wasn’t any reason for him to be afraid to tell me in person. I feel betrayed. Lied to. I feel like I’ve been shown – not just told, but SHOWN through actions – where I rank in his opinion. And Grandma always said, actions speak louder than words. And the thing is, he doesn’t even get it. He thinks that the fact that I was upset is about my feelings about something else entirely. And I haven’t tried to explain because I feel like he wouldn’t listen anyway, and I refuse to take his announcement and make it about me.
    But I feel so heartbroken. No one understands the time and the love I have invested in him. All the middle-of-the-night conversations spent convincing him that his life was worthwhile. All the long emails and IMs talking him through the dark moments when post-Afghanistan PTSD and depression threatened to overcome him. All the time spent worrying about him. All the groceries bought and meals cooked and miles on my car spent driving an hour to his place just to check on him, or spend the weekend, so he wouldn’t be alone while he struggled through a year of unemployment. And I’ve never gotten what I ever felt was a sincere thank you. I’ve heard “Well, you didn’t have to do that,” or an off-handed “I appreciate it,”… and I don’t want to seem ungrateful, but it feels like so very little comparatively. But maybe that’s on me. Maybe the fact that I feel things so deeply puts an expectation on others. Maybe he isn’t able to express his emotion in the way I need him to. I’m not sure. All I know is that right now, I still hurt, and I feel cast aside.

  • Yesterday was my last day of classes for this semester. I have to say, I’m so glad… but it feels sort of unresolved. I still have finals next week, but I don’t think that’s it. I think it has more to do with me feeling like I never hit my groove this semester, and so all the plans I had to get my grades up even more, to do all this work to catch up, my plans for studying, just didn’t play out the way I wanted. I will pass (without taking any Ws), but it is so hard for my perfectionist side to accept what I feel could have been better. But I also know there’s not much I could have done to change the outcome.
  • There’s this thing going on. It’s not good. And I can’t talk about it publicly, because it’s not my story to tell. But it is a family thing, and it’s affecting a lot of people around me. There is a lot of fear and sadness. Maybe still some hope, but the outcome and decisions aren’t up to any of us. It’s a big weight, and I’m worried.
  • This fibro and CFS is driving me nuts. Some days I feel good. I feel like I’ve reached a much better level physically – I’m always some level of stiff/sore, but with meds and new glasses, a lot of the bigger issues have been resolved. But this last week has been rough. I couldn’t sleep last Sunday night, and it threw my whole week off. And it’s frustrating. I feel like it has stolen some of my spontaneity from me. I feel like I’m torn between taking care of myself and coming across as an invalid. I’m not an invalid. I need to modify and adjust, and I’m working on trying to get back some of my upper body strength, but I’m still taking care of myself. But it’s hard, and I never really understood how people feel when they live with an invisible illness like this. I suddenly get the shame and embarrassment. I don’t know how to talk to anyone about it. What do you tell someone new? How does it color their perception of you? Besides my pilot, I made another new friend at school this week… a great gal from my French class who may just be my kindred spirit (despite being 14 years my younger)… but I fear telling her. I fear telling anyone. But then I feel like I’m lying, and I detest lying. I don’t know what to do.
  • Munchkin is gone this weekend. With SD. I wish he weren’t. Not that I don’t want him to have a dad; I do. But I want him to feel safe and happy, and my mother’s intuition is telling me something isn’t right. I’m trying to figure out a way to make this better, but courts and evidence and psychologists and emotions are all complicated, expensive, and time-consuming. Still, the crestfallen look on my child’s face when I have to tell him again that he has to go for the weekend despite his tears and pleading to stay home…. it breaks my heart.
  • I had a bit of a lull in the massive purge I started on the house. I think that the supercharged all-in-one-weekend bedroom makeover for the Munchkin’s birthday in March sort of wiped me out. Fortunately, my mom is a rockstar. She’s sort of kept the embers burning in the interim, and let me delegate several things to a “Mom List” this week. Today, even though I have a severe itch to go buy paint and start ridding the living room of the drab sage walls and finally start the transformation to my “vintage map/world exploration”-themed decor, I think I’m going to try to force myself to focus on the rest of the organization for the office and on getting the old broken wine rack out to the garage. If I can do that this weekend, then maybe I can reward myself with some fresh sunny yellow paint next weekend.

That said… I do feel better now. (Never doubt the power of therapeutic writing.) I’m going to crank up Pandora and go tackle the assembly of my new wine cabinet.

Parlez-vous plus tard, mes amis! Joyeux Samedi! 

On sadness, social media, and the last few days…

Ed. note: This is a bit long. Bear with me, because I had some things I needed to say, and had to explain circuitously.

It’s been a rough few days.

There are several reasons why. But I’ll get to that in a minute. First I want to talk about social media.

Specifically, using social media when we’re sad.

I’ve read many articles about the psychological effects of social media. How we use it, how positive versus negative information in our feeds affects us, how words and topics and ideas trend. And every single bit of clinical research done, to date, tells us that our Facebook lives are perfect.

Perfect? Surely, that can’t be right…

Continue reading