her side

You’ve heard his side, now read Alyssa’s story:

Hi all 🙂 I’m Alyssa, I’m 21 years old and I’m a student, a writer, and a children’s author (among other things). When Cait first suggested that Anthony and I guest post on her blog, I wasn’t exactly sure how I wanted to go about writing it. I think it would be appropriate to start by mentioning my own problems and fears, since I obviously know myself best. Rheumatoid Arthritis (also known as RA) is an autoimmune disease. It affects mainly the joints, making them stiff, swollen, and painful. It also causes fatigue and damage to the internal organs. It is not contagious like HIV. No one really knows why people have RA, but you can be genetically predisposed to it. I was diagnosed in November of 2011, but I’ve had the symptoms for many years. When I have a flare (which is the period when the disease is most active) I am unable to type, usually can’t get out of bed, and have the ability to sleep for 18+ hours. Activities that I used to take for granted (like brushing my hair) can be almost impossible for me during this time. But the point of this post isn’t to talk about my disease in detail. You can visit my blog for that. Despite my troubles, I try to be my old self as much as possible maintain a mostly positive attitude (though we all have our bad days). Sure, I had to give up some stuff (no more guitar playing for me!), but who doesn’t have to sacrifice?

Having RA made me really apprehensive about dating. My ex and I were already together when I was diagnosed, so I didn’t feel the pressure to try and be “normal.” But then we broke up, I realized that there are going to be men out there who can’t accept me for my “disease.” I’ve had guys tell me before that they were only interested in dating healthy women, and an overweight, sick woman such as myself would never cut it. I was so worried that I’d never find anyone  who would want to be with me. What guy wants to date a girl that could potentially be a burden?

I started talking to Anthony online in August, and I was worried that it was going to be the same deal with him. We’d talk, we’d both be interested, I’d feel comfortable enough to tell him about RA, and he’d never talk to me again. So when I told him about my RA, I was in for a surprise that a) he didn’t reject me and b) he told me he had CP and HIV! I will admit that I was both relieved and apprehensive then. He told me that CP affected his speech. Would I be able to understand him? Would I make a fool of myself if I couldn’t? Would I insult him if I asked him to repeat something? I didn’t really know much about the condition, and that worried me. Then there was the HIV part. I like to think that I’ve been well educated about the disease. But of course, I still had my concerns. My immune system is already compromised, and I don’t even want to try to imagine what having HIV on top of that would mean. I was worried that having to be careful about everything we did together (and I’m not just talking about sex here) would mean that we would be spending less time enjoying each other. This prompted hours of research. I will also admit that I was worried about what other people would say about us. I knew friends and family members would pull me aside and tell me that I was taking a huge, unnecessary risk by being with Anthony. They would be concerned about me having a normal (there’s that word again) and happy life. The part I really didn’t want to hear was “are you sure you’re just not settling?” No, I’m not. I found a guy who can accept me for who I am. My life is not normal as it is, so why let this stop me? And I am happy. Fortunately, my mom and sister love him, and my friends think we’re a cute couple. Of course, it took meeting him for their concerns to go away.

Anthony and I have been together about a month now. Instead of worrying about what our diseases prevent us from doing, we try to find a way to laugh about them. We joke about our compromised immune systems and the fact that we’ve been passing the same cold back and forth since we’ve gotten together. When I’m feeling too tired or sick to go out and do things, he’s perfectly content coming over to my house and spending the day in front of the TV watching old cartoons and eating Chinese food, and giving me the occasional foot or back massage. When we’re out in public, he’ll grab my hand and start rubbing my sore, stiff fingers to try and loosen them up.

So we can’t kiss like other couples. So we can’t play the guitar together. But I still try to take care of him to the best of my ability. I made dinner for him for the first time, and I’d say I did a good job. I need to accept that I won’t always be able to take care of him, and that I will need to be taken care of every once in awhile. I think Anthony already has that concept down. So as long as we’re both happy in the relationship, why should anything else matter?

– Alyssa Pierce

Follow Alyssa’s blog My Battle with RA and visit her (and her books!) at http://AlyssaPierce.com

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his side

Before I post anything, I just wanted to ground you in some context. Alyssa and I have known each other for almost a decade, and she’s one of my best friends. We’ve seen each other through headaches and heartaches and everything in between in our years as coworkers, classmates, and friends. She and Anthony have been officially dating for a few weeks now. They have graciously shared their story with me and have allowed me to publish it to this blog. Today’s and tomorrow’s posts will feature their story. So stick around because I can assure you it’s a good one. 🙂

BenchHey there! My name is Anthony. I was born and raised in Staten Island, New York. I am currently 21, as of March. I am a musician, audio engineer, photographer and (sadly) a Kmart employee. Now that you know some stuff about me, I’ll tell you why I’m writing in Caitlin’s blog.

Caitlin was kind enough to let my girlfriend Alyssa and me talk about our disabilities and how they affect our daily lives. While I am open about my status and disability, I don’t think many people know that I was born with HIV (Human Immune-Deficiency Virus) and a “minor” case of Cerebral Palsy. Some of you might’ve learned about HIV in high school, but I know most of you never paid attention in health class. It’s okay, neither did I.

All jokes aside, HIV is primarily a sexually transmitted disease, but it can be transmitted in so many different ways whether through semen, blood, breast milk, or natural childbirth. I contracted the disease from my birth mother. My foster parents adopted me at two weeks old and were unaware that I had acquired the disease until I was about a year old, if I remember correctly.

BirdAnyway, HIV basically affects the immune system. The disease restricts the immune system and hinders its ability fight off any bacteria, infections, colds, diseases or other viruses. HIV also leads to AIDS (Acquired Immunodeficiency Syndrome), which basically means you lack an immune system and are not able to fight off anything, not even the common cold. People still think those with HIV/AIDS die of AIDS. That’s wrong. They actually die of the common cold or whatever they’re sick with.

Now that you know what HIV/AIDS is, I’ll talk a little about Cerebral Palsy. Cerebral Palsy (or CP) is similar to Alyssa’s condition, Rheumatoid Arthritis (also known as RA). Cerebral Palsy is a low-muscle-tone condition that restricts some parts of the body, if not all, from doing everyday things. People with severe CP usually are unable to walk or move certain parts of their body. In most cases, including my own, CP involves the mouth/jaw area. This causes the person to speak differently than others.

When I was diagnosed with CP, I wasn’t supposed to be able to walk or talk at all. However, my foster parents supported me in every way and I have thrived over CP with the help of some physical therapy as well as speech therapy. My CP is located in the tongue area. I can’t move my tongue, which keeps me from talking normally. I have a hard time sounding out S’s, F’s, and L’s. Most of it is from laziness, but with some effort on my side and the listener’s, I can be understood.

Living with HIV and CP have made me the person I am today. Sounds cliche, but it’s true. I don’t think I would’ve been able to do the things I do now, such as play guitar or any other instruments. I was on a 1st-2nd place bowling team for years until high school. I ran track, I was in NJROTC (Naval Junior Reserve Officers Training Corps), I lifted weights, I did yoga, and God knows what else. Flower

As you can imagine, I was made fun of a lot as a kid. My parents wouldn’t let me out of the yard because of my HIV. They were afraid that I would hurt myself and bleed, and infect someone. They were also afraid of what others would think of me having the disease. This has caused me to be somewhat shy and reserved. By the time high school came around, I had learned to keep my shyness and antisocial habits at bay. However, I was still nervous and weary about my status and condition, especially in relation to girls.

HIV and CP both took a major toll on my social and relationship/sex life. I dated a few girls here and there, but the majority of them wouldn’t accept me for who I was. I wasn’t completely open about my HIV status until my senior year of high school. So the girls I dated then only knew about my CP. Still, CP was enough to throw most girls off; they would often think I was mentally handicapped. I shook every rejection off my shoulders because I knew I had better things to worry about in my life. I was always the “I don’t care, shit happens” kind of guy.

A few months ago, I let down my guard and started online dating. I met some pretty interesting people, but the same issue occurred. They didn’t accept me for who I am. Since then, however, I’ve met someone worthwhile: Alyssa. As she will talk about in her post, I had the same apprehensions as she did when we first began speaking. We both brought up the topic of health, and we kind of just accepted each other on the spot. She brought up her RA as I brought up my HIV and CP. Our conditions worried the both of us, and we had our fears about how it would affect our relationship if we ever did decide to date.

After some time talking and spending time with each other, we’ve learned to accept each other (including our health issues) completely. It wasn’t easy at first though. I was brought up with a close-minded father who made me anxious to date anyone of a different race or less-than-perfect body type or disability. I did not let that get to me this time, though, because I knew she was the one for me. Alyssa and I finally decided that it was time to meet my parents last week. This was hard for me, but I finally gave in to the idea and sure enough, everything turned out well!

White FlowerMy parents love her, my grandma loves her, even my dogs love her! Our relationship really brought my spirit up in every aspect I can think of. Before, I was never able to show affection to a girl because I was always afraid I would drool on her due to my CP. I was afraid I would get made fun of for not being able to pucker my lips. I was afraid I would be pushed away for not being able to French kiss. But now things are different. I show Alyssa all the affection I can, not only because she’s a bit insecure due to her past relationships, but because I know she won’t judge me for who I am. She deserves every peck on the cheeks, lips, arms, hands, wherever it may be. She’s really special to me. And as is said in Robert DeNiro’s film A Bronx Tale,”The only thing that matters is what’s good for you and how you feel about each other. Let me tell you something, when you’re alone late at night in bed just you and her under the covers, that’s all that matters. You gotta do what your heart tells you to do.”

– Anthony Arrigali

All photos in this post are courtesy of Photography By Anthony Arrigali

Stay tuned for her side of the story. Alyssa’s post will be published tomorrow. Thank you for reading, and leave your comments for Anthony below.

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media monday – april lockhart takes on the lumineers

 

When I first started teaching myself how to play guitar a couple years ago, I thought I was the only one-handed guitar girl on the planet. Then I discovered April Lockhart’s YouTube channel. So as much as I’d love to say that I was an original, I think I can be content knowing that I could TOTALLY be just like April if I had super bouncy hair, flawless vintage makeup (I’m secretly hoping for a makeup tutorial, April!), a twangy voice, and…you know….HEAPS of talent.

Enjoy April’s gorgeous rendition of The Lumineers’ “Hey Ho” and share the music video (which is adorable) with all your friends (especially that guy you’ve been crushing on forever, since the lyrics are pretty darn romantic).

Peace,

Caitlin

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style

You know what they say: another day (or week in this case), another discovery. And this week’s discovery was more of a reawakening than a realization. In addition to working on Oxygen’s upcoming fashion-based shows, I’ve been styling my friends and helping them shop for the outfits that I know will make them look best. I’ve always loved shopping and clothes and all that fun stuff that comes with being a girl living 20 minutes from New York. So it’s not like my boyfriend Chris had to twist my arm to get me to help him buy new clothes for the Fall. It’s become a relationship routine of sorts; with every major change in weather, we head to the mall and I pick out some basic pieces and cool accessories to supplement his seasonal wardrobe. He ends up looking quite put-together and handsome, if I do say so myself. This autumn I was going for a sleek look with button-downs, sweaters, and vests (think Justin Timberlake circa 2007), so I was running around the store looking for the clothes and then running back to his dressing room to deliver the next piece for him to try on. Then just a few days later, I hit the mall with my friend Lyss to find her new outfits for Fall. And yes, I must say I enjoyed these shopping outings immensely, especially since I believe that what a person wears says soooo much about him or her.

One glove only

Don’t get me wrong – I don’t love fashion for the reasons that non-fashionistas (is there even a term for people who aren’t into clothes?) may think. I’m not shallow or all that materialistic, and I certainly don’t judge people solely on appearance. But whether or not you’re pretty/plain/rich/poor/disabled/all of the above, you have the freedom to choose exactly how to decorate and present your body to the world. And how awesome is that? As a writer/creative/media professional/artist/20-something/whatever you want to call me, I’m really into personalizing everything. From the background photo of my baby cousins on my iPhone to my hot pink and zebra print bedroom (rawr), it’s all about self-expression. And what better canvas than the body that takes me through every moment and every action to showcase who I am?

Now let’s get one thing straight: I don’t buy into the “ideal figures only” approach to fashion. Having a disability doesn’t preclude me from celebrating the way I look and wearing the clothes I want to wear. And over the past few years I’ve found a handful (haha, I love puns) of ways to highlight and prettify my asymmetrical figure. Sadly, though, the computer that was home to the majority of my photos crashed a while back. So I hope you don’t mind if I post pictures I found on Google or store websites instead of pics of me in the completed looks. Anyway, I type too much. So without further ado:

1) One-Shoulder Tops/Dresses – I LOVE asymmetrical necklines because they mirror the unevenness of my arms and make the statement that strange or different proportions are beautiful. There’s a lot of talk in the science world about beauty and symmetry being synonymous, but this look proves that it’s the unique and the off-kilter that strikes the eye and holds attention.

Subtle but lovely

2) Upper Arm Bracelets/Cuffs – When I’m not wearing my prosthetic hand, I don’t have a wrist on my left arm to wear a bracelet. But I think that arm deserves to wear pretty accessories too, so upper arm cuffs work particularly well. Plus, it’ll go just as great with a party dress as it will with casual jeans and a tank top. If Cleopatra could pull it off waaaaay back when, then I say why not?

3) Opera Gloves – Yes, they look super fancy shmancy over the prosthetic and paired with a cocktail dress, but I think it’s also pretty cool to wear just one on any given day. (Note: For me, it started for practical reasons rather than as a fashion statement. The “skin” on the prosthetic was easily stained by ink on newspapers and books, and I hated how it looked “dirty” so I just wore the glove over it.)

4) Grecian/Roman Goddess-Inspired – The famous Venus de Milo statue has long served as a standard of beauty for all women, in spite of AND due to her lack of arms. So it’s always fun to channel this icon with a Greek/Roman-inspired piece or full outfit.

So there you go – just a few ideas on how I like to use clothes and style to my advantage. I hope this has been an interesting post. And I promise I’ll start taking more pics of what I wear so I can post them on this blog. Do you want to see more style/fashion content on this blog? Let me know what you think.

Peace,
Caitlin 🙂

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