change · cleaning · denial · goals · home · Michele · resolve · stress · unemployment

Fear of the Unknown

If I were a Harry Potter character, I’m fairly sure the Sorting Hat would not have placed me in Gryffindor, simply because I’m not really a brave person. Yes, at times in my life, I’ve been able to stand up in front of the crowd, singing or acting, and I was, for a long time, very good at making new friends. Not so much any more. The last few years of my life have left me a very different person, and so many things scare me these days. It’s difficult to be in crowds, and the idea of having to talk to too many people I don’t know is terrifying.  I’ve had panic attacks in public places, including the local Fred Myer, where I wound up crying in the manager’s office. These events had been getting farther between, until recently, when certain things began making me very nervous.

If you’ve been reading this for long, you know I share a home with my extended family: my parents, who are 78 and 83; my younger sister and her two children, who are 10 and 20; plus two cats and a dog. During the last year my father lost his job, and hasn’t been able to find another one; he has also begun showing signs of dementia, which is difficult for all of us. Mom hasn’t worked outside the home in years; they have some Social Security coming in, but no savings. My sister hasn’t had a steady job in over a year, just temp things, and my while my niece has a full-time job, she doesn’t help out much. Hence, the only real income in the household now are my SSI/SSD checks every month, and Mom & Dad’s Social Security. Not a lot for all these people to live on. Jolene & I both get food stamps, which helps, and for now, all of our medical expanses are taken care of. The big issue is the house payment; we cannot afford this house.

When I moved back in here two years ago, my goal was to stay a few months and then get a place of my own. But things went downhill very fast; I sank into depression after the breakup and Michele’s death, and still haven’t fully recovered. It was easier to hide in this room than get on with my life. But now, I don’t have a choice, and this scares me. My parents are talking about selling the house, and this means we’ll all have to move. Sure, they’ve been talking about selling for years, but this time they’re actually doing things to put it in motion. Getting the basement presentable. Talking to realtors. Getting rid of things. And scaring the hell out of me.

My tiny room is full of stuff, and I have dozens of boxes in the garage. Every few days I’m encouraged to begin sorting, getting rid of things, both so the place will look better for prospective buyers, and so it will be easier to move. Jolene has done a bit of this in, but I’ve yet to begin, even though I’ve nothing but time on my hands.

At first I thought I was just procrastinating, as usual, being my normal lazy self.  I’ve had several conversations about where I’d go when the house sold with different people. Jolene proposed we get an RV, put Max in online school, and tour the country. I’ve discussed getting an apartment with my ex-husband and friend, Charlie (we get along well, and he’s easy to live with), but it’s never gone farther than discussion.  But recently I realized that I honestly have no idea what is going to happen to any of us, and this is nerve-wracking.  Some part of me believes if I don’t do anything, the unknown will stay far, far in the future, and I won’t have to think about it. Denial is my favorite river, and I swim deep in it.

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Talking about things helps, so they say. I’ve discussed this fear with Jolene, and Mom, and now you. Let’s hope it helps, because I cannot continue doing nothing, as much as I might like to. Getting past the fear is going to be hard. I may have to channel my inner Steel Magnolia and remember “What doesn’t kill us makes us stronger.”

Barry Manilow · bed · friends · Michele · Music

Beaches and Beds

Yeah, that title sounds like this is gonna be a dirty post, but really, it’s not.

I’ve spent 65% of the last week in bed. Sleeping, I mean. For some reason, I’m incredibly tired lately. Amanda would tell me that I’m depressed, Lori would say I’m still getting over whatever made me so sick, and my Mom, well, she said “You’ve become lazy.” Which made my sister and I laugh, because I’ve always been lazy. Lazy is not a new thing for me! I’ve fallen asleep all over the place this week, though. I went in to talk to Max, fell asleep on his bed, and woke up when he started hollering at the video game he was playing. I sat down at the kitchen table with a cup of tea, started snoozing. Fell asleep in my chair at least once a day. And yesterday, I swear, I fell asleep in the shower. Weird. I like my bed best. It’s squeaky, and tall, but comfy and I sleep better there than anywhere else.

“Beaches” is on television as I write this, and Barbra Hershey just died, so I’m typing and crying at the same time. I saw this movie the first time with Michele, and we both cried then. I read the book at some point, too; this is one of the times where the movie is better than the book. The story of childhood friends growing up together, and the death of one feels especially poignant to me these days, as I miss Michele. The anniversary of her passing was earlier this month, and I’d intended to write a big sentimental post about her, and our friendship. I just couldn’t do it. Something inside me wanted to keep that day personal to me. So I lit a candle, said a prayer, and looked at pictures.

The songs that make me think of Shel are not those in the soundtrack to “Beaches,’ no disrespect to Miss M. Michele and I danced to Copacabana, sang along to every stupid 80’s tune, and tunes from The Pirate Movie. And this:

 

This song still makes me cry.

 

blogging · Glee · heaven · Michele · Music · reading · Sherlock Holmes · teenage behavior · writing

Talk Nerdy To Me

Let’s talk about nerd-dom. My nerdiness. It’s my blog, nobody reads it but me, I’ll talk about what I want, and you can’t do a thing to stop me, nyah-nyah-nyah. I can write all about how I spend way too much time reading Drarry fanfiction, or watching Glee (or listening to music from Glee while reading Drarry stories–that’s the best!), and nobody would care! Ah, the joys of the internet.

tumblr_m4lozoOdM21rv6s6lo1_500But first, I must point out that I am not a geek, or a dork. A geek is smart enough to create and fix things like computers, etc., and I am not. A dork doesn’t really get anything. A nerd both understands and is into really cool stuff. That’s me.

Yes, I do enjoy Harry Potter fanfiction, and I do not care if you think that makes me a nerd, because I embraced my nerdiness way back in Junior High when I sang a Barry Manilow song in front of the entire school. Yes, I am THAT big a nerd. I am a Barry Manilow-loving, Doctor Who-watching, Firefly-missing, Sherlock-worshipping, fanfiction-reading, nerd. And I am damn proud of it. In some respects, I guess this makes me a hipster, because I was dorky long before it was cool, and I was happy being this way. I’ve never really wanted to be anything but who I am.

In high school, I had good friends, and while we weren’t the popular crowd, we got along with everyone, and we had a ton of fun. We were primarily choir and theater geeks, and most of us made good grades as well. At the time I thought we were all staying away from drugs and alcohol, although I know now that wasn’t true for all of us; either way, we had a lot of fun just being totally stupid, as teenagers tend to do. I never remember wanting to be any “cooler” than we were; I thought we were fabulous then, and I still do. Mostly. Except for the friend I’ve since discovered was stoned pretty much since eighth grade. That just pisses me off, although it does explain a bit about him.

In college, it was pretty much the same. Weird friends, just older. Different states, different things, and eventually, a bit of that alcohol. Either way, we were all some kind of misfit toy, and it worked.

Anyway. All these years later, even with Michele gone, I am still listening to Barry, still spending most of my Friday nights watching bad movies and occasionally eating pizza. Not the same movie anymore, thank god. And nobody will let me get Hawaiian pizza anymore, which is okay, since I’ve had my fill.

I’m still a nerd. If I had friends nearby, I’m sure we’d be sitting around a coffee shop somewhere, laughing until one of us spit coffee out our nose. Heaven for me will involve lots of time in cozy cafes with Michele, Elissa, Louis, Doug, Andy, Demere, Marina, Christopher, Lori & Don, Marty, Eric, Kathy, Karen, Leslie, Kenny, Wes, Teri, Monica, Fay, and so many more. Lots of time just being nerdy with the friends I love.

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Michele · seizures

Selfish to the End

Sometimes watching a television show, or reading a certain book will start me on a train of thought I never imagined taking. I’ve spent the last few weeks watching the HBO series ‘Six Feet Under‘ and it has me thinking about death. Big surprise that a series revolving around a funeral home would take me there, huh?

I’m not having dark, goth thoughts, or seeing dead people like some Haley Joel Osmet wannabe. I’m not wondering about what it feels like to be dead, although I used to, once upon a time. Occasionally, the show has sparked a severe pang of regret, a wallop of a reminder of how much I miss those I’ve lost, and how much it still hurts. Mostly, what it has made me think about is planning. We never really know what is going to happen in life, and there are things that should be on paper.

For years I had what is known in Oregon and Washington as a ‘Advance Directive’ filled out, stating what I wanted done in case of a medical emergency, and who I wanted to make those decisions for me. My sister was my designated person, since she knew my wishes, and can keep a calm head. After Steven and I got engaged, I changed that paperwork, naming him. He was irate to read that I had a DNR order in case or a severe trauma. The idea of being kept alive by machines is totally appalling to me, simply abhorrent. I know now that if something had happened to me while his name was on that paperwork, he’d have been fine with keeping me all Sunny Von Bulowed, if only so he could play the martyr.  Needless to say, his name is no longer on my papers.

I realize it is a bit grim to be thinking these kind of thoughts on a warm Spring evening, yet my mind goes back to the number of times I have awakened in an ambulance or hospital bed, and I can’t help but wonder. What is going to happen if I have a seizure some day and don’t wake up? I do not want things to be any more difficult for my loved ones than they need to be, and more than anything, I want things done MY WAY! Really, what is the point of a memorial service if it isn’t done the way I want it? Seriously. I would be so pissed off if I looked down from Heaven and realized that they were playing “The Wind Beneath My Wings” at my service! Or if someone had the nerve to bury me in uncomfortable clothes! I swear, I refuse to go to my eternal rest wearing pantyhose and heels!

Yeah, that’s me. Selfish to the end.

 

 

change · epiphany · exercise · goals · lessons · Michele

20 Questions for my 45th

Yesterday was my 45th birthday, and on the whole, it was pretty anti-climactic. I spent most of the day enjoying the benefits of Comcast on demand by watching Season 1 of Shameless. Between that I sat outside in the sun and read, which was lovely. Just having sunshine was a luxury! Oh, and I answered all the birthday greetings from friends on Facebook; that was excellent. I got a wonderful birthday gift from my sister & nephew, which they picked out weeks ago at a reptile show they went to. No, it isn’t a lizard, it is an awesome Southwesterny owl necklace. I love it!

The last year of my life has been full of so much turmoil, so many ups and downs. While I have made some changes, I’ve mostly been sitting here, in my chair, stagnating. If there’s one thing I know, it’s that stagnant water STINKS! I am so tired of my life stinking. Starting now, starting here, I am churning up the water, changing my life. (Yes, I know I’ve said that dozens of times before. Shut up. I mean it this time.)

These questions came from a post titled 20 Questions You Should Ask Yourself Every questions20Sunday on a blog about productive living. I am using them here as a way to give myself a guide for goals, etc. Honestly, this seems like a lot of things to worry about every single Sunday, and I’d only ask myself all these questions every six months or so. Don’t expect profound answers, people. If you are looking for genius, what the hell are you doing here? Seriously? Anyway, here we go.  Text in italics is from the original post, these are my answers.

 

  1. What did I learn last week? – If you have trouble answering this question, it’s time for a change.  It doesn’t matter how old you are, you should learn something new every week.  That baby powder doesn’t get rid of ants; that baking with gluten free flour is not that easy; and that I have no wish to date or do anything else with guys from Craigslist.
  2. What was my greatest accomplishment over the past week? – Reflecting on your accomplishments is a healthy way to raise self confidence and contentment.  It’s also an effective way to track your progress.  Umm, I didn’t do much of anything last week. Big fibro flare, all sorts of health issues. However, I managed to read about 6 books, not a record for me, but pretty good. And while I have not lost any weight, I’ve not gained, either.
  3. Which moment from last week was the most memorable and why? – It may open up your mind to new passions and goals, or simple pastimes worth revisiting. So much fun just goofing around with Max. He was on Spring Break, and was sick half the week, but when he was feeling good, he and I took turns teasing each other in the odd little way that we do. It reminded me how much I love kids, and love being social, things I miss, hiding in my room.
  4. What’s the #1 thing I need to accomplish this week? – Everything else is secondary, and should be treated as such.  Nevertheless, this question will also shine light on other noteworthy tasks. The same thing I needed to accomplish last week–get my ass out of this chair and EXERCISE!! My biggest goal for this year is to get healthy, and lose weight. The only way I can really do that is by exercise, which I never do. 
  5. What can I do right now to make the week less stressful? – Set reminders in your calendar, get your laundry done, fill the car with gas… organize yourself. My doctor said I should schedule in exercise, thinking that would make me more likely to do it. When she told me this, I, of course did nothing; now I am thinking it’s the right idea. 
  6. What have I struggled with in the past that might also affect the upcoming week? – The idea here is to learn from your struggles and better equip yourself for future encounters. Pain. Last week was full of pain. And the coming weeks likely will be, as well. I am hoping that more exercise will help with some of the pain, and will allow me to break free of the evil ibuprofen monster which is messing up my tummy. 
  7. What was last week’s biggest time sink? – Steer clear of this in the future.  Setup physical barriers against distractions if you have to. Television is always my biggest distraction. I may have to hide my remote. And the chargers for my electronics, so I don’t spend too much time online. 
  8. Am I carrying any excess baggage into the week that can be dropped? – Physical clutter, mental clutter… eliminate the unnecessary so the necessary may shine bright. Oh, I could spend weeks cleaning up just physical baggage. My little room is small, and I will work on getting rid of more junk this week. I got rid of a lot of clothes a few weeks ago. But magazines, papers, and other crap still needs to go. Big fun.
  9. What have I been avoiding that needs to get done? – Pencil in a time to get these things done.  For any 2-minute or less tasks, consider scheduling them first thing Monday morning. Didn’t I just cover this?
  10. What opportunities are still on the table? – If it’s still available and you want it, make a concrete plan to go after it this week. I’m writing. Not as much as I should, but I am. And I will figure out two things soon: a job, and a place to live. These will be on hold until after my disability hearing on April 18th. Once this limbo is decided, one way or the other, I will make a decision. 
  11. Is there anyone I’ve been meaning to talk to? – Regular communication can solve problems before they fester.  Always keep an open line of communication to those around you. Yes, some near, and some far. I’d rather not mention names here, but just know some of you will be getting a phone call or email this week.
  12. Is there anyone that deserves a big ‘Thank You’? – Take time each week to thank the people who have helped you.  Your kind gesture will not go unnoticed. My baby sister, Jolene. She’s been here for me throughout everything, and never gets enough credit from anyone for everything she does. Same goes for my mom. 
  13. How can I help someone else this coming week? – The easiest way to get what you want is to help others get what they want.  If you help them, they will remember you when you need help. I am a lazy bugger, and do very little around the house to pull me weight. I chip in when asked, but I should do more…
  14. What are my top 3 goals for the next 3 years? – You’ll never make any progress in life if you don’t setup realistic goals for yourself. This is a difficult one. Three years, three things. 1) Get my own place again. 2) Get my book written  3) lose 100 pounds
  15. Have any of my recent actions moved me closer to my goals? – If the answer is no, something needs to change. I’m starting on writing, but on the others, not so much…
  16. What’s the next step for each goal? – Knowing the next step is the key to accomplishing the whole. I don’t have an answer for this. Any ideas?
  17. What am I looking forward to during the upcoming week? – The answer can act as a great source of motivation.  If nothing exists, schedule something to look forward to. I don’t have plans yet, but I’m working on it. Suggestions?
  18. What are my fears? – Consciously address your fears each week and slowly work on resolving them.  It’s all about taking baby steps. My biggest fear now is about that upcoming disability hearing, and it’s outcome. I’ve been waiting for a year for this to happen, and I am, frankly, terrified, that these people who know nothing about me, will decide that I am “cured” of a lifelong disability, and will  cut off my health insurance. I can figure out a way to get by without the money, but I need that insurance; without it, I have no way to pay for medications, doctor visits, etc. And then I am back where I started, with seizures all the time, pain and suffering.  
  19. What am I most grateful for? – It’s a smart way to keep things in perspective, and something you should never lose sight of. Every single day I am grateful to be alive, grateful that I have a family who loves and helps me. 
  20. If I knew I only had one week to live, who would I spend my time with? – Another helpful reminder… Life is short.  Spend more time with the people you care about. I’d tell my family how much I loved them, every day. I’d find a way to get to Albuquerque, and see the friends there that I miss so much. Elissa, Kathy, Karen, and the rest (anybody else hearing the Gilligan’s Island theme song?). 

 

These are my 20 questions, and my answers, such as they are. Someone told me last week that 45 isn’t a landmark birthday. Well, for me it feels like it, especially since I know so many who never made it this far. I miss Michele every single day, and will, for the next 45 years, or until I see her again.

Internet · Michele · money · moving · realizations · seizures · Shel

Questions Worth Asking — And Some Answers

A while ago, someone sent me a link to a page entitled ‘25 Beautifully Illustrated Thought-Provoking Questions.’ I glanced at it, thinking “Hey, that’s nifty,” bookmarked it, and went on with my life. Today I stumbled upon it again, and a few of these questions hit me right between the eyes.
The last few weeks have been rough, and I’ve spent a lot of time feeling sorry for myself. Complaining, whining, bitching, whatever you want to call it, I’ve done them all-in spades. (There is a reason I called this site “Read Between the WHINES!”) Not enough money, bad health, bad weather, too many stupid commercials, nothing good to eat, blah blah blah. The worst thing was, after two-and-a-half years without a seizure, I had a whopper of a fit. Ended up with a huge headache, sore muscles and a nasty bitten tongue. Poor Jonna.
Then, as I was scrolling through these photos today, this question struck me.
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Of course, I am aware that others have things much worse than I do. I’ve always been aware of that, but sometimes I forget. When I began having seizures at age 15, I took it in stride, and never made a big deal out of it, partly because my friends didn’t. If my friends had flipped out, I might have, but not one of them did. I’m sure there were people in our small town high school who thought I was a weirdo, but I was not aware of them. My mom always took it the hardest. And when I began seeing specialists at the OHSU Epilepsy Center, and met young people who had never been able to have any kind of normal life because of their seizures, that was reaffirmed. I was able to do almost everything that so-called normal people did: I worked, I had a home, a life. I never had to wear a helmet, or be confined to a wheelchair. For a long time, I even drove! (Looking back at that, I am amazed at how careless I was with others lives!) Many people who have the type of seizures I do (tonic-clonic, formerly referred to as grand mal) often lose control of their bladder and/or bowels during a seizure. I have always been extremely thankful that this has never once happened to me!
So yes, I am aware that others have things much worse, in many areas. I am struggling financially, but what that really means is that I don’t have spending money, and cannot afford to move. I am not homeless, nor will I be; nor am I going hungry. My family is always here for me, and I for them; so many don’t have that. So, I cannot buy a new book, or get a manicure. I have a perfectly good library card, and a drawer full of nail polish. So, I can’t afford that gym membership. I’d probably never go, anyway! I have perfectly good walking shoes, and the neighborhood behind us has sidewalks.
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This month I turn forty-five years old, and shortly after that, the anniversary of Michele’s death arrives. I miss her every day. If Shel was anything, she was positive, and she would want me to celebrate what I have, not what I am missing. Somehow, I think finding these pictures was her way of reminding me of that.