clickmom

Bob was a good guy

I've been thinking a lot about a photo project I want to do some time in the future about my dear dead friend Bob. Here's the background: We met when were 18- we had both dropped out of our respective colleges (me, Georgia Tech and him Julliard) and we were both attending city university while we figured things out. I had reunited with a high school friend who was also doing the same thing and one day Bob just followed my friend down the hall after their German class. I thought for sure Bob had a crush on my high school friend, Bob just admitted he had never seen anyone quite like my friend coming from his hometown in upstate New York. My friend looked a lot like Boy George from back in the day. Keep in mind that this was in a time when not everyone even had cable television and MTV was brand spanking new (and played only music videos)  and the world was a lot bigger (even New York State was bigger) than it all seems now. 

So, Bob decided from the very first day we met that he and I would be friends and he always kept tabs on me, coming in and out of my life as I went back off to college, retuned, lived in Brooklyn with a dude Bob hated, fell for the husband and retuned to manhattan, adopted dogs that Bob would fall in love with and dog sit for, have babies that Bob would fall love with, Bob's move to Atlantic city, and then to rehab in the town right next to stepford, then a 1 year stint in my house, and then a he left me for a brief stop in NY followed by 10 years in California before he tragically died at the tender age of 49. He was 6 months shy of his 50th birthday and I was so looking forward to both growing old with Bob and also teasing him about being 50.

Bob got HIV from a really shitty boyfriend when we were 28. For 20 years I always afraid of losing him. In the end he had rectal cancer, which was stage 4 and definitely fatal, but Bob was accepting treatment and undergoing chemo which had caused his blood not to clot. He'd call me hysterical from time to time because he'd wake up having accidentally scratched a bug bite or popping a pimple and he'd be frantic that his bed looked like a bloody murder scene. One day he hit his head and sat down on his bed.  For some reason Bob tried calling a friend, who was at work and not answering her phone because she was in a meeting. He never called 911 and bled to death. I honestly feel like he dodged a bullet, because the cancer was about to take him down and he did not have to suffer with that cancer death. This was probably the only break Bob had gotten in his whole life. He had been dealt a bad hand in life and was pretty tortured by all the bad things that ever happened to him. This way, though better for him, was sudden and shocking for his friends and even though he's been gone for over 3 years now I'm still desperately disappointed that me and Bob couldn't be 50 or in our 50's together. 

Bob used to tell everyone I was his soul mate. At first, when I was young, I thought it was just a kind of stalkerish thing to say but then I realized what he meant. Bob was truly the brother I never had. I loved and understood the good parts and the frustrating parts, and he was someone I truly loved because of all of his strengths and despite any of his weaknesses.

When Bob moved out of my place in stepford he left a couple of bags behind. They came along with me to new town and they sat unopened until after his death. They were full of bric-a-brac. The kind of stuff that we all accumulate (well, except for the eye brow raising sex toys maybe) and don't part with because it either reminds us of good times, or we have sworn that we are never ever going to dress in drag again, but we will keep that one brown wig just incase. Bob had saved everything. It's an interesting mix. He was an interesting guy.

Bob would give (and often did) a friend the shirt off of his back. Or his last dollar, or feed you his only groceries for the week. He was that kind of guy. He got taken advantage a lot too. But he never let that stop him from believing in the goodness of other people. When Bob passed, noone knew how to contact his mother, who was suffering with alzheimers, and his dad was also on his death bed. Bob, who knew he didn't have long often told me he'd like to pack a suitcase and spend his last days wandering around Italy (he had a complicated family, but his step-grandmother was Italian and Bob was particularly close to her and felt Italian by association) and he told me that he didn't care what happened to him after his death. He was fine with whatever the Italian officials did to his body. Well, Bob, didn't make it to Italy, but I told his dying father's common law wife that if she entrusted me with Bob's ashes that one day I would bring them to Italy and find the most beautiful places to scatter them. She agreed that my idea sounded like a solid plan. Going to Italy is on my bucket list. I have to deal with the husband's situation first, then I'll take Bob to Italy. And I will photograph what is left of Bob in the beautiful places.

So, I have been asking myself how to photograph and tell the story of someone who no longer exists. I think I want to do that by visiting people who knew Bob, giving them one of his little trinkets and photographing them. In Bob's spirit of generosity I think that would please him. I am also planning on asking the friend's of Bob to share stories about Bob with me, since for the last decade especially I only saw him once, on a trip I took to California with the family. He worked hard in California, working in a rehab trying to help others deal with he demons he had struggled so hard to overcome for so much of his life. 

Bob was a good guy.

I hope I can do him justice. I can't tell you why, but I am feeling as if I want to start reaching out to Bob's friends now. Nothing is urgent here, I have no idea when I will be able to do the photo project I would like to do. I just feel like the time is right to connect with the people Bob had connected to along his way.

validate me

So. Let’s discuss being married to someone with dementia. I had a long talk with Pal today. His husband is in bad shape. The Parkinson’s has been joined with Alzheimer’s and now he is just a non person who still knows how to eat. Pal was telling me that he was cleaning out some stuff and found some letters of commendation from prestigious organizations thanking his husband for the job well done (he was an engineer) and how strange it was to think that his previously highly capable and hard working husband, who is still relatively not old yet, has been reduced to someone whose only care in the world is getting more yogurt. Also, he thinks Pal is his brother, which is reminiscent of my grandma who insisted her son was her brother because a son wouldn’t visit her but a brother would despite the fact that she had not seen her brother, the loser, for at least 30 years before she died, first because he stole her life savings (I know, every family has a story like that) and second because he did not live to a ripe old age  (Hahaha  asshole!) 

There is a bit of gas lighting involved when married to dementia. Is it me? Am I panicking over nothing? In the case of being married to my personal husband, who is quite sure there is nothing wrong with his brain and I have just manipulated the doctors into believeing there is something wrong with his brain, as if it is my life long desire to be married to dementia instead of him, it can really make me pause and ask questions too. Am I nuts? 

No. I’m not nuts. You don’t get teams of medical professionals on your case when the wife is making stuff up. 

Luckily we saw another specialist last week who remarked on the personality changes over the past year. Sweet validation. Come to mama, let me hold you in my arms. You know vailidation is what I live for! Sometimes I wonder how much of the husband still lives inside of the husband. It’s so freaking weird. 

OK. Stay with me now while we journey back in time to 3 decades ago and the husband and I were a new couple. One day I was on the phone with my mom and I told her the husband was about to return from work. Now, you should know that every evening approximately 5 minutes before my dad would return from work my mom would run into her bathroom and brush her hair and put on lipstick. Lipstick. In her own house when she would sit down to dinner 10 minutes later.  So, my mom says LETS HANG UP SO YOU CAN GO PUT ON LIPSTICK hahahaha. I remind my mom that I think lipstick is created by sadists and never wear lipstick. She asks me what I’m wearing and I answer honestly. I was wearing one of the husbands worn work shirts. She tells me she will bring me to the store and buy me some lingerie and I tell her I’m not the lingerie type either and also that I am TOTALLY POSITIVE THAT THE HUSBAND (who was still my boyfriend) THINKS IM SEXY WHEN I WEAR HIS SHIRTS. My mom tells me that I’m crazy (pattern!). I never go lingerie shopping with her or start wearing lipstick (yuck) 

so, back to the present , as in recently, in my attempts to make my mosquito magnet self mosquito safe I decided I should try and wear some long sleeved shirts. And then I wondered if the husbands old work shirts, which were just collecting dust in the closet would be more comfortable (airier) than my typical cotton knits which can magically feel like gauze in the winter and wool blankets on the summer. So I found a beat up shirt with a frayed collar and wore it to the woods. The husband spotted it and said remarked that I was wearing his shirt. He said it looked good on me. That shirt was working for me mosquito wise so the next day I wore one of his old shirts again, but the second day I sat around and chatted with the husband when I got back from the woods. Then I said I was running upstairs to change my shirt before going out to run errands and he got all seriously disappointed that I was taking his shirt off. He said he liked seeing me in his shirts. I realized that he who never says a compliment nor any other nice thing one could possibly say was enjoying looking at me in his old work shirt.

so much to my surprise he is still in there somewhere and also, I was right, mom!  

do something

It's been a while. I think all my internal freaking out and whining over the boob burn impeded my ability to express my self externally. So, about that boob burn, it's healing much better than I had imagined, it's smooth and pink, just like newly created skin which has never seen the light before. I no longer have to spread a thick layer of burn cream (like cream cheese on bagel, as per doctor's orders) on it and am only keep it moisturized and obviously, hidden from the sun for the immediate future/entire summer, which for me, just mostly started Wednesday, as Wednesday was Josh's last day of school and I am still living by the school calendar. 

I sucked it up and ordered a whole 2 new bras. One of which was a frumpy old stand by which I've been wearing the make/brand of former, and it does a fine job but is wholly boring and a bit too high cut in the middle- not because I like show off the (now burnt) cleavage, but because the inside corners of the underwire actually poke up into my t shirts and one new model. I tried on the new model first and loved it, until I started to move around and realized one side underwire was stabbing the beejeeezus out of my left arm pit. I tucked a cotton pad in it and wore it anyway for a couple of days. I'm hoping (since I already tore the tags off) that somehow washing it will remedy the pokiness of it, but (let's be real) I'll be wearing that one with cotton pads under my left arm. The new old standby version was too tight to put on with all the bandaging (I recall this bra doing a big tension release in the early days) so I was waiting for the end of bandaging and burn cream application to the boob to give that bra another chance to squeeze around me. I also found a not entirely worn out one (as opposed to the completely pathetic 5 year old ones I've been wearing) so, that means I have two new ones, (albeit pokey or tight new ones) and 2 not entirely old ones, so I'm good to go. 

I saw something on Facebook about a 100 squat per day 30 day challenge so I have been doing 100 squats every day. The first few days I was mildly sore (used to be way stronger than 100 squats a day back when I lived in stepford) but now I feel like my legs/ass are mostly just tired because I've been squatting very day since the 13th, which would make today my 10th day of squatting in row. My quads are feeling it and my miniature  gluteus maximus is feeling it. The first few days I felt like I must have the thighs of a competitive weight lifter those quads were talking so loudly to me, then I quickly realized I wasn't going low enough with my butt, so I went lower and that woke the butt up in a big way. (Cue:embarrassing dream story) So, you know how my dreams are often directly related to something I saw/heard or read during the day? Yesterday I saw a video which I cannot for the life of me remember except for the part where the suited well dressed men turn to walk off camera and the one in the back pats the butt of the one leading them out of the frame. Next thing I know I am having a dream where someone is tapping my own butt except it is not part of a comedy skit and I am having all sorts of consent issue feelings around it but also amazement at how firm and tight my own butt feels. I suspect I was actually patting my own butt in my sleep. That's how real the sensation of dream butt tapping was. I really need to reawaken the gym rat in me.

And, in fabulous news (because I love me some positive reinforcement) I showed my current work to the photo group and it was very well received. Yay! Unfortunately, nobody jumped out of their chair with just the right person to market/sell my work, but the vote of confidence was exactly what the doctor ordered. I taped the conversation, so I'm going to transcribe it, just not tonight because I am pooped. I might have missed something. I was ridiculously nervous in front of the group, which I attribute to this work being so very personal. Somehow I photograph trees and lay my own vulnerabilities bare. One comment, from my grad school friend really gave me the warmest happy feeling when she remarked how I have really come into my own over the years. I respect her opinion. She would never offer an empty compliment. So, I was happy I floated on that happiness cloud the entire next day.

Which felt like a weird thing to do since I am just sick sick sick over the current state of political affairs in the US. I can not believe the cruel and self serving hoax that the real fake news has managed to play on the citizens who will ultimately be hurt the most.  Also, the rise of the Nazi party in modern day (Didn't we learn anything in world war 2???) america has me just ready to flee. If I had somewhere to go I'd already be there. I wish we had bought our lake house in Canada and I'd be hiding out trying to convince Canada to keep me. I feel such a sense shame being part of this country right now, and I'm not out there hating anyone or inflicting cruelty on others. People are tearing children away from their parents and then drugging them into submission. How can this be?

Part of me can't believe it is even possible for me to think about anything other than what is happening in this country- how do I go about a normal day when atrocities are happening all around me? I feel powerless, but I'm sure that is what the GOP is counting on. One day I drove past an old woman walking back and forth with a small sandwich board on her front and back pushing her walker across the bridge in this town where people march when they protest. I was thinking that maybe I should march there with my own sandwich board too. Maybe I could start something. Something is better than nothing, right?

hope it fits

So, I've been carefully placing my left boob in an out of bras trying very hard not to jostle, rub or otherwise irritate and therefore break open the gigantic 2nd degree boob burn blister and I was doing just fine until today. It's open and it freaking itches so bad I want to cry and scream. IT'S NOT FAIR!!  WHY ME!!!  OH LORD! WHY ME???  But what I really want is a medically induced coma until this burn hell is over. I was thinking I might have to buy one of those turtle neck post mastectomy bathing suit tops this summer to wear if god forbid I want to go out in the sun with my raw meat breast hanging out, but then I realized that somewhere in the disaster that is my closet is one of those SPF 50 shirts that I had to buy years ago in the bahamas when I sun screened everyone except for my own face and hands, and I only got my own hands because after sun screening everyone else I kept rubbing the excess into my own hands. Mommy always comes last and I'm so freaking tired of that. 

I let myself fantasize about being an empty nester and getting to choose the kind of life I want to live, including living where I want to live and never having to care about a school district again and then Evan went and told me how helpful it would be if I stayed in this house in new town (which I feel completely alienated from and do not want to be a part of) so he could return after college and live here for a COUPLE of years while he saves money and sets himself up for life. Also, Josh is having some kind of fantasy where he returns on vacation and visits his old high school as an acting program success story. lordy lordy lord.  Give me strength.

I told the kids all I wanted for mother's day was for the three of them to let me photograph them one day when they completely cooperated and Matt came up Sunday to give me my photo gift day. To be honest, I was so happy just being together with the three of them that I took the photos but didn't actually feel like I needed to.  They cooperated and it was just so wonderful and sad at the same time. Wonderful because I love and adore each of them so much but sad because as much as I want and look forward to my empty nest I would honestly like my empty nest to be geographically convenient to their personal nests so I could have my fill of them when I wanted.

And lastly, I desperately need some new bras and that is such a drag when actual stores don't carry your size and you have to order stuff off the internet and hope it fits. Also, I don't want to try new bras on with my crispy skinless left ta-ta. That's kind of gross, especially now that I know how filthy clothes can be straight from the manufacturer. I'm gonna wash those under garments before I wear them.

Why 2018 can go F itself

I have been coughing with various pee leakage inducing strengths since 3 days into this calendar year. Currently, I am hopefully in the final stages of my fourth and longest lasting (2 months) upper respiratory bout and have my eternally optimistic fingers crossed that I’ll at least get the summer off from coughing. I’m sure the universe has its own plans  

Also in 2018 came a fall down the stairs which has resulted in lingering mid back pain as well as constant and sometimes extraordinary toe/foot/ankle throbbing like a hot poker pain, as in EVERY DAY I WHINE ABOUT MY FOOT PAIN AND MY TOE PREDICTS STORMY WEATHER, a return of pre canercerous irregular skin cells, as in pre CANCER, does the good lord ever expect me to sleep again? Can one take a knife to their own skin and remain sane? Because I’d like every single freckle removed for (mental) safety sake. I swear some them are new. And they look like gang members. They need to be taken down (carved off) and now a second degree tit BURN because yours truly tucked a travel mug filled with boiling hot tea into the crook of her elbow because she was carrying too many things and then managed to bend forward spilling said boiling hot tea all over the area of lefty that spills out when wearing a too small bathing suit, which is the only kind I currently own and might have to fork out some bucks for a turtle neck bathing suit if I plan on swimming this summer  because judging by the amount of blistering this is going on ...... This is going to take a long time to heal and also, there will be unfortunately located scarring. I also managed to 2nd degree hot tea burn my stomach, but comparatively that is so minor I didn’t even notice it until the next morning when I saw it in the mirror. 

Oh yeah, 2018 also brought me dual tick bites, one for each shoulder blade, as if twin ticks wanted to simultaneously do something which mirrored each other. So, I’ll figure out eventually which of the myriad of tick diseases they surely imparted to me during their hours of blood sucking because I’m not the type to have that kind of tick connection and not get a momento of the episode. Let’s be real. 

map head

So, the bitch realtor quit on me.  Seriously!! She wasted 2 valuable pre-house sale-season months of my time and then she flat out quit because I pointed out to her that it was she who cancelled our last appointment when she tried to blame me and she backed the fuck out. She is now on my list of people I'd like to be in a dark alley with during a lawless blip in time. I'd punch her face to pieces. My anger here knows no bounds. 

I just want to cry and hide and find a cave to wait it all out and then the ax can fall and I'll come out of my cave and start over without the drama.

My skin pre-cancer is weighing on my mind.

The husband seems worse (and by worse I mean maybe more tired - but is it depression- or psychological-as if that was even possible!) than usual but nothing I can quantify for the doctors so.... just plugging along here. I looked up some articles on aspartame toxicity and am completely convinced he has poisoned himself  into this condition except no one will believe me. I have asked the doctors about aspartame toxicity and they look at me like I'm nuts- but the research is out there. No one wants to go down that route because in this country cash is king and you can't go against the corporations which will eventually control everything, period.  I need a new country. 500 days of the monster named trump and I haven't had a breakdown yet, thanks mostly to the late show hosts monologues, because I need to know I'm not the only one finding this ordeal as terrifying as I am finding it. 

I am going to assemble a rough draft (super rough) book dummy that Ive been thinking through and its going to be so sad, because its about how sad everything in my experience is right now so I am in that mind set which makes everything harder. 

Its all just harder right now.

And I forgot to wear my mosquito netting hat this morning and if I don't have a dozen mosquito bites on my head right now then I don't even have a head, because under my hair is welt after swollen itchy welt.  It feels like a 3D topographical map of a volcano ridden landscape.