This Guy With POTS Is Just as Inspiring as the Famous People He Photographs

Simply put, Adam Jacobs’ photos are breathtaking. And it’s quite possible that he never would’ve discovered his talent if he hadn’t picked up a camera as a way to distract himself from the undiagnosed pain he now knows was caused by Postural Orthostatic Tachycardia Syndrome (POTS). Until he was 18, UK-born Adam was just a healthy,…

Source: This Guy With POTS Is Just as Inspiring as the Famous People He Photographs

Are You There, God? It’s Me, Chelsea

Judy Blume wrote from the perspective she was most familiar with – her own. It’s what we all do. It’s what makes our stories unique, especially when we look at the story teller as female vs. male, as tall vs. short, as narrow vs. wide, as black vs. white, as wheeled vs. walking.

Something that Judy Blume would have no perspective on is the experience of a girl going through puberty and dealing with questions about her body and her sexuality while also experiencing a physical disability. For instance, would it be so easy to use a tampon if your hands did not have the dexterity and strength that most girls had simply because you had cerebral palsy? It seems unfair that a girl with CP have to advertise to the world that she had to install a brick (aka pad) in her underwear because a tampon was just too damn complicated.

For me, my baldness has flavored many stories. I didn’t choose to lose all my hair. I had absolutely no control on it falling out, and I have no control on it growing back. However, wigs have gotten so good that I can “pass” to the untrained eye. I still get a once- or twice-over.

This woman is hugely disappointed because she has never been catcalled. I’m sure she’s faced many, many types of discrimination, but she is heartbroken because she has never been desired simply for her appearance. She is always going to be liked for her personality, and only after she has been passed over by many, many men. She has never written in her journal that some stranger said something sexual and inappropriate to her, and she told him to fuck off and then ran-walked away.

Right now I only use a cane to help me walk – my walker stays in my closet. But I know a bit about what she feels. I am treated completely different when I’m walking with my cane compared to no cane. I even feel different, more vulnerable without it, because I know that when my feet are slapping together and my face is paralyzed, I’ve lost all desirability.

http://www.huffingtonpost.com/the-establishment/nobody-catcalls-the-woman-in-the-wheelchair_b_9130226.html

 

Crouching Tiger, Hidden Creeper

I’ve been on an opera kick this week. Puccini is my absolute favorite composer, so I’ve had that station going all week while I have read articles, organized my taxes, and for the first time have colored in my “adult coloring book.” I’m a little slow on trends sometimes.

I often don’t understand the meaning of the songs because who here speaks fluent Italian? Not I. But it certainly adds a little flavor to my tasks. Also, it’s the funniest thing to run across some slow-motion films of dogs wiping out in the sand or attempting and failing to catch treats or toys in their mouths – so dramatic when Maria Callas is wailing!

I was feeling very passionately that my OKCupid profile needed another revamp. Guys don’t care what I’m doing with my life or which books I’ve read or if I know all of the cool places to eat. They just want to know if I will go hunting and fishing with them (welcome to Minnesota) and if I can hook my ankles behind my ears. So I took all that crap out. This is what my profile says now:

MY SELF-SUMMARY
*******I’M ALLERGIC TO:********

– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Bad behavior and excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap
– Republicans
– Being called “cutie”
– Organized religion or prayer

The most private thing I’m willing to admit

I don’t get out as much as I would like to because of some major health issues.

You should message me if

– You are a non-smoker (of all things) and don’t use chew/snuff (ever)
– We live in the same country; my preference is to connect with someone in the same metro area because I dislike long distance relationships.
– You know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.

Almost immediately after posting these bullet points, a guy hit me up and said I was hilarious, and unfortunately, he was a hardcore Catholic and a Republican – but he really appreciated my sense of humor. We ended up having a really good chat through the site. He talked about his daughters, and how one of them was living with him as well as a nearly 2-year-old grandson. We chatted about the intricacies of finding and keeping a job that could pay the bills without the need to add another job. We talked a little bit about my disease and how it affected my ability to be social.

In all, a respectful, flowing conversation happened. Then I got an unexpected but very welcome call from my close friend in Arizona, and told the guy that I couldn’t chat because of the phone call. He said that was fine and posted his number, and I replied back with mine. He asked if I would be interested in a date. I thought what the hell, if we get along, we both could include each other in our circle of friends.

My call with my friend was pretty lively. She told me about the difficulties she had with men she had dated (or really, had minimal contact with) who kept calling and texting, even though she wasn’t interested and told them so. She told me how one had briefly been a professional MMA fighter, and took it upon himself to put her in a choke hold and then forced her to the floor. Another was a guy who couldn’t seem to accept the fact that she had gotten into a relationship with someone else instead of him, and even agreed to a double date so my friend could introduce him to our other friend – until he realized that my friend was also bringing her boyfriend.

My advice was that she must use small words and tell them why she is cutting them off, and then cut them off. First, they are not respecting her boundaries, and she does not owe them anything. Second, she needs to get her mind out of the space where women are required to be people pleasers and make sure they don’t anger men. That anger rears its ugly head when men think they are simply entitled to women’s bodies. How dare we reject them?

After we ended our call, I texted the dude and apologized for taking longer than I had planned. He called me “cutie” with a smiley face, just to piss me off. The next thing he did was tell me how beautiful my eyes are. I thanked him and told him I appreciated his complement, but I put more value in values than I do appearance. We discussed options for activities where I wouldn’t be up and out for too long (hopefully longer than a high five).

And then Hidden Creeper came out.

I was trying to discuss meeting places with him, and he kept talking about my appearance and how “cute” I am and that he just couldn’t help it. Then he asked me if he could kiss me.

In my head I was saying, “Hold on there, buddy – where in the hell did this come from, Mr. I’m-a-Hardcore-Catholic?” It doesn’t take a rocket scientist to figure out that him talking about kissing me is his code for testing me to see if he can go balls deep. It happens all of the time.

I told him that if we both felt attracted to the other person, then sure, we can have a smooch. But I also told him that I didn’t want to discuss it further, because it has been my experience that if all you do is talk about what you want to do with the other person once you have entered their personal space, and then you actually meet, it doesn’t end well. Sometimes there’s no attraction from one or both parties. but then they feel obligated to ______ because it was talked about. I told him that I wanted to make sure we’re not getting ahead of ourselves.

He replied with, “Ok sounds good” and then stopped texting me. So I still have no idea if this date is going to happen, but my guess is that it won’t.

I feel the change in personality happened as soon as we started communicating off of OKCupid and that is because he knows I could easily block him there and he would have no idea how find me. Luckily I can push his calls and texts to spam if I get some on my cell, but he doesn’t know that. I just feel sorry for his daughters. He revealed to me that his oldest daughter moved back in with him because she’s 24, has a 2-year-old, is kind of lost, and the baby’s daddy is an asshole who took off. I want to shake him and say, “He took off because you didn’t teach your daughter how to value herself, or she may never have let him in in the first place.”

Being able to look at everything and process it in a much healthier way than I have in the past is my present to myself. I’m not perfect, but I’m getting better. I wish everyone else luck, would like to remind you that it sometimes takes effort to get on the right track, and keep holding yourself and other people accountable.

Seek And Ye Shall Find

Yesterday didn’t strike me as being especially significant. It wasn’t a holiday and my rare disease wasn’t cured, so…

Okay, first of all, I’m paying more attention to the things that bring people to this little blog – and I do mean little. Six months ago I was lucky to get three visitors in a single day. Now my number of visitors is increasing because of the ways that I am networking with other bloggers and the content that I am including.

Nothing could prepare me for some of the search terms indicated by the program, though. (You’re welcome.)

*where does horny women hang in nashville
*fragile handle with care advertise porn
*pantyhose kik names
*stocking fetish social sites in India

Congratulations, and let your freak flag fly. There’s no way for me to identify the people making these searches. I have to point out, though – no one searched for hot, bald, unmarried women?? I mean, it’s been a while since I’ve been proposed to by a total stranger. I hope that issue remedies itself shortly.

In the evening yesterday I took the short bus to a guided meditation session held in a health crisis center. I wasn’t sure how it would go because I tend to just kind of throw my hands up in the air and then rush onto the next thing, whatever that is, to keep my brain stimulated because I get bored easily. During the actual meditation, which really only lasted about 20 minutes, I had to fight against dozing off twice, and luckily I didn’t snore or accidentally pas gas.

Twice I saw an orb rise out of a pool. I only “saw” it to the left of my left eye. I told some of the attendees during our recap about my experience and let them know that their vibes had a specific effect on me. One woman asked me if I had always been able to read strangers’ energy. I have, but I have never really put effort into following through on what I read; usually I push it away or ignore it, which is actually very destructive because then everything gets a free pass into my life and I end up hip deep in crap.

Whatever happened, the universe made a connection appear for me. My short bus driver made a stop after mine to pick up a lady in a wheelchair. She greeted me when she was lifted into the van, and immediately we started chatting. I asked her if she had just come from a dance performance because the building she had come out of was a theater specifically set up for that purpose. The answer was no, in fact; she was on the board for VSA Minnesota, the “state organization on arts and disability” (I got that from the website).

I told her a bit about my arts background as well as what I’m doing now (which is admittedly very little because my days are consumed by endless doctor appointments), and she gave me three organizations to get involved with besides her own to network, meet new people, be creative, and maybe even apply for a grant in my area of interest.

To the casual observer, this may not seem to be a big deal. It just drove home to me the fact that this state is so much more inclusive than where I moved from. I never, ever would have had so many resources to access for my particular physical challenges if I would have stayed in Arizona. I wouldn’t have been able to even ride the short bus because of their strict rules regarding who should be allowed to ride.

Really, meeting and speaking to that woman last night helped to open my eyes to the fact that even though I’ve got these major problems, I might actually be able to find a group of people who can see art where others may only see injury and illness. I am still working on retraining my brain to accept this as my new reality because the doctors have refused to keep operating on me. I still really miss driving my car while harmonizing at the top of my lungs.