Blue jeans. It's what I do when I feel a lack of control over the ever changing symptoms…I put on blue jeans. Seems that one can't be that sick if you are wearing denim. We use to dance and laugh in my friend's mother's basement to everything Neil Diamond...especially "Forever in Blue Jeans.." And often when I grab mine in this not so pleasant state that song and memories play in my head...and the Blue Jeans served another purpose, a pleasant distraction to a different time and place.
It's a pretty universal truth that through a course of a lifetime by circumstance or choice "we" becomes "me". I've found oddly the easiest "we to me" transition was the end of my 10 year relationship in the midst of this illness. It forced something that wasn't going well for either of us to end. The most difficult part was that he was no longer a part of our extended family anymore. Something I know he cherished. My grandparents became his. Not having a traditional family, this was the hardest to watch be lost. I'm sure that is what propelled us longer than good for either one of us. It still is difficult, I miss him often but it was the right decision. When we could "do" things together life was much easier …of course. But I ask many to try and hold a relationship up when everything you love to do is taken away. Our shared love of activities certainly had masked our insufficiency's.
The hardest "we to me" transition many face comes through natural life stages, empty nest, loss of a loved one or transitional times when friends get married, have children and their associations broaden and change. This already difficult transition for me however came simultaneously while I was getting more and more ill. More and more confused and more and more isolated from the world around me. I just didn't see it coming that I was no longer apart of this "we" friendships that I had cherished and cultivated for 20 plus years. But then there are these rare moments in a really somber occasion that took me back to being part of that "we" and remembering what it is like to pick up after 5 years of not seeing someone and feel like it was yesterday. So this is that story....
I had a pretty idyllic childhood. There was chaos around me that I was completely unaware of that could and probably should be a story in of itself if I ever get to writing it. Sure I had the mean girls issues, the not the greatest at sports situation going on, but I always had really good friends. Sometimes these friends left me for cooler groups, but despite that hurting at the time I had a pretty decent perspective that it was self preservation and not really about me. Not to say it didn't feel that way.
Funny how life works, lockers. Yep, by alphabetic order in High School. Lockers and homeroom; DRE and DRO of last names is how Mel and I reunited as friends. We had attended Dixon Elementary school together until it closed after our 4th grade year. So we all scattered to the other elementary schools in the district and then would all be reunited in one massive cluster F of a middle school for those two brutal years of 7th and 8th grade. Those two years are a messy blur of post mono chaos. We then dispersed to one of two High Schools. At BCHS that is where the alphabet Gods looked down on me and Mel and I reconnected.
Mel and I recently attended the funeral of our close friend's mother and as we all sat there mulling old stories we reminded the "group" that we were epic dorks unlike them in High School. That was until Melanie made the "Freshman 40" and bless her heart I came along for the ride. Melanie is gorgeous. It's not a matter of opinion - it is a fact. And for some reason in High School her Greek/Serbian background dark hair got the Whitney Houston curl. Whitney's epic music video had come out and Melanie had that look and bingo…this "underground newspaper" the closest scandalous thing our school produced came out with the 40 hottest freshman girls…. and she was on it. So she was noticed, not just by the guys but by the girls.
Melanie and I kept our epic dorkiness well in check as we laughed about during the wake. As we all discussed that the "cool" girls would meet each other in the bathroom before school and exchange clothes; we were not nearly cool enough to be a part of the clothes exchange. Then we got ourselves in hysterics laughing; side note this is one of the things I miss most about being sick; spontaneous conversations that lead to belly hurting laughter. It is a very different experience when people come to "visit" you…there is no spontaneity, depending upon when they last came or how updated it is a lot of how are you doing, anything changed, any new treatments. But in this circle of friends in the middle of a wake was the closest group activity with my girlfriends I have had in about 5 years. I was grateful I had done my diligence to prepare and be able to feel well for that precious hour.
Melanie and I started reminiscing about my epic failure of a sweet sixteen birthday. Another girl from our class and homeroom we asked to join us; and as Melanie said she was probably just being a good sport while rolling her hazel eyes at how did she end up here. My parents dropped us off at the movie theater to see Casual Sex. Yes scandalous. It was a movie with Victoria Jackson from SNL and Lea Thompson; pretty innocent for having the word SEX in it; but nonetheless R rated. And no joke, this greasy haired 17 year old in an ill fitting tux with a bad bow tie carded me. You read correctly I was carded at the movies on my 16th birthday. I'm not exactly sure if he wouldn't then let us in to any movie knowing we would just go to that one, or there was nothing remotely we wanted to see. However I know he wouldn't even let us in to use the pay phone - even as we said 2 people will wait outside the ropes. So we walked to the nearest McDonald's to call my parents to pick us up. At this point remembering the entire thing, I really thought my little weak spleen was going to burst wide open with tears running down our eyes at the absurdity of the situation. Luckily for me it was the age of John Hughes' movies, so I had 16 Candles to console this less than remarkable coming of age…however there was no Jake in a red convertible…oh well. My parents hadn't forgotten.
We were in our own little word. That took us to remembering when we stayed up til 4am to make some hideous pants. Those were how our Friday nights were spent. The trip down memory lane in a group of old friends with shared memories was a gift I haven't had in a really long time. I hated why it was happening; this was now the 4th close friend that had lost a parent. We are now at the age our parents were when we all first met. It's a unpleasant feeling of time passing. Generations shifting.
Soon after my epic fail of a 16th birthday by my 17th everything had changed. We slowly actually became really close friends with a larger group; most I still have some contact with today. Others are as close as siblings and save me day in and out with this illness. The night before my 17th birthday I was home and about 5 of my guy friends stopped over to see if I wanted to take my dad's 1968 Mercury Convertible out for a drive down Hwy 100. I remembered I went into our refrigerator in the garage to see if they wanted something to drink and though was always well stocked with drinks - it had every imaginable soda in it and thought that's strange. So we all left and made up and down drives cruising Hwy 100 most likely ended up at Gilles a custard stand. Most likely also losing a hubcap off the car and someone going to chase it down. My friend Mark and I had looked for that ill fitting hubcap on many a side roads after a quick turn. Again laughing, always laughing being in a field searching for a hub cap…and the relief knowing my dad wouldn't freak out if it couldn't be found.
Then the next day when I got home that evening "surprise" there were about 20 people in my basement for a surprise 17th birthday party. Oh how a year can change everything. I got a massive stereo system - Stephanie bought me my first ever CD Journey's Greatest Hits. My friends found the "dance costume bin" and well I'm in Phoenix otherwise I would share some hysterical pictures from that night. We laughed a lot. I just remember Junior and Senior year as lots and lots of laughing.
At this awful occasion; I was given a gift it was the first time in a very very long time I felt a part of anything. I felt young and healthy again and at ease as I was all those years ago. I knew what it had taken to get me to this hour and I knew how long I would pay for it…but I had made it. I could understand how people there wouldn't believe how bad it can get. How sick I am 95% of the time because I didn't look sick, didn't act sick...but many things fell into place. First, the funeral home is less than 5 minutes from my home. Second I gave myself time from flying home til the funeral. The two days after the flight in I could barely move; and I hydrated and rested complete bed rest to hopefully gain some strength. My parents came to make me dinner before, I know the right clothes to wear that distract, I know to find a chair immediately. But I can easily understand until you are with me 24/7 for a few days that I seem like a mirage of an illness. The next day I couldn't get to the church until it near ended, and couldn't make the lunch after. All I could do was crawl back into bed....
I am forever grateful I didn't get sick before most of my friends got married because we took these epic Bachelorette weekend trips. This was the "we" the "Ladies" I was part of most from high school with the addition of some good friends my friends had met in Madison and beyond. It wasn't a clique it was a group of friends that despite physical distance found a way to still find time once a year at least to get together. I had traveled to Atlanta to see where they lived for a brief time, then back to Atlanta for one of those Bachelorette weekends. Vail for another. Huntington Beach for another. Then the weddings. Then the baby showers.... I look back and think where did I let everyone down that all of a sudden due to my circumstances I was dismissed from the we. Did people not believe me…were lives just too busy…. was I not communicating...
Which is in part why I started writing this blog. I kept missing or canceling on things. And then glory be to god forsaken Facebook was blind sided when I saw the former "we" minus "me" all kicking it up on the rivers of Colorado. To say I was heartbroken would be an understatement. No one told me. Of course if they had asked I wouldn't have been able to go. I had known about two other yearly trips to Madison. 60 minutes away, but for me mine as well been a continent away. I got it; same routine Madison was the epicenter. I tried once to make it, got half way there and felt so sick - with my mom driving had to come home. I guess I was just shocked; not once did anyone think maybe we could go to Milwaukee instead of Madison and then we could do some stop in at my house or hell party while I listened. But the trip to CO without anyone calling to say hey we know you can't do this - but we will send pics or something - it was as if I had disappeared or died and no one cared. Or people justified "well you can't do this anyways" or the of course "you've always been anxious"….yes I have always had a cautious nervous tendency and dealt with your drunken asses like rounding up puppies for years and laughed and enjoyed every second of it. It never stopped my life dead in it's tracks.
I slowly realized I had lost my group. I tried. I called two people and laid it out there…this is incredibly painful - no one comes to visit, no one sends cards, I know everyone has children and husbands but if situation was reversed I would be the first to rally around not rally to ignore. That the isolation and not being part of a group added to the pain. In the end one person said "I will do better." It was the greatest gift one could be given. No excuses, no "buts" just listened, heard and put away pride and not only did better exceeded better which has transformed a once solid friendship to a life line. Others, well I grieved and realized we would always be friends, I loved and cared about this group of people - but I felt I was back to being the 16 year old -a bit always on the outside looking in.
It has taken me a long time not to be angry. I used Tony Bernhard's wisdom that I don't know what is going on in their lives; although that was part of my frustration - I wanted to know. It wasn't just about me it was about me no longer being witness to them. The reality that I don't KNOW their children or their lives broke my heart. If I was well I would be the first to drive to see a soccer game, attend a graduation or a play. I could not come to them yet none of them was coming to me.
I struggle often writing this blog; writing your story has to include other people…and I have aimed always to share my experience with doing little to no harm to others. My caregivers often comment and people that know me well talk about how I
am quite funny in real life but my blog isn't - and it's true - I laugh as much as I cry. Often it's survival at the absurdity of this illness and all the bizarre drama
that comes with it and maybe that's another book or blog. This is my
escape. And writing funny takes more talent and energy than I have. The oath as a doctor is First Do No
Harm. I toe that line often with this blog…to tell my story there is no way around sharing someone else's.
I ask myself what is the goal, is it self indulgence or is it to educate, purge, explain…I look at a lot of "funny" writers or well received memoirs and they often by necessity have a take no prisoner approach…I have plenty of stories like that in the vault like we all do and I tread the line of what is thoughtful and truthful. What is private and what should remain a secret. This is important to me to clarify; I don't believe these people don't care about me, but I think perhaps they forgot how much I cared about them. And the pain and burden one feels by constantly saying "I can't" when living with this illness. It feels like failure to oneself and to those you care about. No one gets out unscathed. That is the one constant, but we including me can just try to do our best.
This post is dedicated to the moments that are stamped in my heart. To accepting change. And lovingly to DRE/DRO . xo xo dresko.
But it don't sing and dance
And it don't walk
And long as I can have you here with me
I'd much rather be
Forever in blue jeans