Love in Two Parts

I am in a relationship. It’s exciting and scary to admit that I love him. However, this isn’t a piece about why I love him.

I will admit that I do not have the best track record when it comes to romantic relationships and/or love. So with him, as I am loving him, it has also been this parallel experience of learning about love, about loving him, loving others, and loving myself.

What I’ve learned about love, at least in the role that it plays in my life, is that is a two-part notion. We often discuss love as this feeling, this emotion. But in my relationship, I am learning that love is also a decision.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.1 Corinthians 13:4-7

But love isn’t just patient. It is the decision to be patient; the decision to be kind. I love him. I also make the decision to love him. Because it is a decision that I have made I can admit that it isn’t always easy, but I’m learning that it isn’t supposed to be. In loving him, I’m learning how to love myself better. It’s funny how life turns out.

Through my experience of love, I’ve learned that I view love as a two-part notion of emotion and decision. With this I’ve learned to love both my partner and myself better. What’s your love story?

Slut Walking

Earlier today I joined in on a Facebook debate about the most recent Slut Walk in Los Angeles that was hosted by Amber Rose. The original poster shared her respect for the walk. Not surprising, women who didn’t even know when or where the Slut Walk was created or why joined in to discuss their disdain for Amber. According to them, the reason why Amber Rose shouldn’t lead this “new” movement was because she wasn’t “respectable” enough. Her clothes and behavior online isn’t considered appropriate. Instead of thinking and eye-rolling through an entire new conversation lead, I’ve decided to include my Facebook response below. Feel free to offer your own insight in the comment section.

I may not be a fan of Amber Rose, especially of how she dresses. But no matter how she dresses or who she shakes her behind for, these actions aren’t cause or shouldn’t be an excuse for raping any woman. Comments like “She’s a slut anyways. She shouldn’t have worn that short dress. Why was she shaking her ass if she didn’t want it in the first place?” are some of the reasonings behind the Slut Walk in the first place. I also think we have to be careful of not listening to certain women or not letting them lead certain movements because we don’t deem them as “respectable.” That’s exactly what happened with Claudette Colvin. She was actually the first woman during the Civil Rights Movement who refused to give up her seat on a bus, but the movement didn’t want to make her its face. Rosa Parks was older, light skinned, more “respectable,” and refined. And just like that Claudette was almost erased from history because she didn’t fit the “respectable” label of that time period.

What are your thoughts?

Unconditional Love

Recently, a friend of mine from college came out to her friends and family as gay. While this conversation can be hard for anyone, I know that it was extremely hard for her because of her relationship with God and her strong Christian faith.

For the purpose of not identifying her, I am going to call this friend Sis. On my Venus Black page I talk about the family of poets that I have. This is how I met Sis. This is how we became friends and how we then became sisters.

Sis loved us all regardless. That’s hard for most people to do. We all were and still are a group of misfits. Here Sis was, the truest and loyal Christian I knew, and she loved the weed head, the sex addict, the hip-hop muse, the nerd, the songstress, the most cursing of all sailors, and yet she loved us all unconditionally.

I’ve always known that Sis’ love for us ran strong, deep, unconditionally, and unwavering. However, I never actually thought about her love, what it meant, or what it could do.

When Sis told us about her sexuality, she also made it clear that some may not accept her for it. For those who did not she gave her permission for them to distance themselves from her. But if all they needed was time, they are always welcomed back into her life later. I was completely in awe of this. Here was this woman telling us something so important about her life, her identity. This moment should be all about her. Yet, she still found a way to say ‘It’s okay if you don’t accept me. I still love you anyways.’

Sis’ love makes me so emotional. I’m literally crying as I write this. Not too many people give the type of love that Sis offers. As a matter of fact, she’s the only person I can think of, besides God that is. I don’t know if we deserve her type of love. I don’t even know if our love for her is enough for what she deserves.

Can you imagine what life would be like if we all loved each other the way Sis does? You may not know Sis, but I hope that after reading this you like me will now try to replicate the love that she has for her friends and family.

Dear Sis,

Thank you for teaching me about love. I hope that I can learn to give others love the way you give yours to me.

Love always and forever,

Your Sister Venus

I Don’t Feel Strong Today

When I shared my first post about living with Uveitis on Facebook, my friends and family told me how strong I am for living and fighting through this. Even when I go back to read the post about my last Methotrexate injection I realize that that sounds strong too.

But today, today I don’t feel strong.

In my last blog post I talked about dealing with the side effects and how well I’m handling them. I don’t know how in the world I forgot to talk about my joint pain. My knees have been giving me problems for weeks. I’m stiff. I feel old. If I sit for a half hour then I know it’s going to be tough standing back up. The problem is that I’m getting used to it, which I why I didn’t remember to mention it last week. I can’t even describe the emotion that comes with the realization that I’m used to the pain that comes as a side effect of my Methotrexate. I’m angry, sad, and hurt. Why me? Why do I have to deal with this? I know it could be worse, but why can’t it just be better. I never thought that this would become my normal.

And then there’s today. Last week I did so well with my injection. No tears. No struggle. I even did my injection on the first time. Tonight was so hard though. Two tries and I couldn’t get the needle in. It hurt. I had to call my friend on the phone and have him sit with me and crack Drake vs. Meek Mill jokes until I was finally able to inject myself.

Tomorrow may be better, but tonight I don’t feel strong and I’m not going to pretend like I am.

Am I Actually Winning This Time?

The week marks Week 4 of my Methotrexate (MTX) injections for Uveitis. I’m proud to say that this week was the first time that I did the injection completely by myself, on the first try, and without any tears.

Although it’s too soon to know for sure, I think the treatment is working. I haven’t had a flare up, pain, or any noticeable inflammation in my eyes within the last seven weeks. For me that’s pretty rare.

A lot of patients on MTX go through rough days after their injection because methotrexate is actually chemo. When I was taking the oral version of MTX I was exhausted for the first half of the week. I could fall asleep anywhere. I was nauseous and dizzy most of the time. Anytime I would stand up I’d have to hold onto something to make sure not to fall over. Luckily, my doctor doubled up my dosage of folic acid to fight off the side effects and I’ve been fine ever since. I was worried that the side effects would come back stronger with the injections, but now the only time I feel off is just the day I take it.

Could it be true? Could I actually be finally winning in this fight against my immune system?

Learning to be Thankful on the Bad Days… The Fight Against My Immune System

I don’t get along with my immune system.

To make a way too long of a story short, I’ll give you the Erica’s Cliff Notes version. My immune system attacks my eyes. When it attacks, I have “flare ups.” My eye/s goes bright red, I get smudged white spots in my vision, I’m sensitive to all light, and it’s extremely painful. It’s calledUveitis. The problem? It can slightly reduce vision or even lead to severe vision loss.

I’ve been dealing with it for six years, but in the beginning it wasn’t that bad. I would maybe get a flare up every couple of years or so, but they would go away with steroid drops. However, within the last couple of years I’ve been getting flare ups almost every few weeks. At first we were able to get them under control with the steroids, but now even when I’m on a low dosage of steroids I have flare ups. Hence, the problem. Steroids are not a long-term treatment. There are side effects with long-term use.

To be honest, I don’t think I was actually really concerned about the steroids until I was at a hockey game last year. I went to take a selfie and noticed in the photo that my left eyelid was drooping. Unfortunately, a permanent side effect of the steroids. For some reason, my left eye flares up more than the right. Because of that I take more steroids in the left. Over the next few months my left eye drooped even more. I remember being at a function with a friend of mine and taking a photo. He kept having us take the picture over, had us switch sides, and then finally laughed and said, “Your eye!” I felt so bad.

The crazy thing is that I know how vain this sounds because the truth is it’s probably not as bad as I’m describing. While there is a noticeable difference, on a good day all I have to do is tilt my head in a certain direction and you can barely tell on the photo. But still it drives me crazy and on really, really bad days makes me sad.

Another side effect with steroid usage is that it can increase the pressure of your eye, which can in return cause loss of eyesight. Mine spiked for a bit, but I was able to start a medication that has done a great job at keeping it low and controlled.

The third problem with steroids is cataract forming. Most people will actually eventually get cataract as they get older, but I’m well aware that I’ll probably end up having the surgery earlier than most since I’ve been on steroids for so long. The positive part of this is that the surgery is so advanced now that it also corrects your vision, which for someone who’s been wearing glasses since the third grade is a major plus.

In January my doctor decided to go another route to try and stop my flare ups and get me off of the steroids for good: immunosuppression therapy. It’s exactly how it sounds. You go on medication that suppresses your immune system. In my case we were going with Methotrexatethat’s taken orally. With Methotrexate you can’t drink alcohol (such a damper to my mid-twenties) and you have to have your liver tested every couple of months to make sure the medication isn’t damaging it. Not to mention I’m absolutely terrified to catch a cold or the flu now. There are different dosage levels so it gives you room to play around. I’ve been on it for six months.

Right now is where I need to point out my really incredible support system. There have been family members and friends who’ve been on this journey with me nonstop. My mom has traveled hours to come with me to doctors’ appointments. When I wanted to get a second opinion, a friend of mine from grad school took off work just to go with me. Two of my friends even let me camp out of their couch before dragging me out of my pity party. And that’s only a small handful of them. For them I am thankful.

Last week I started listening to a podcast called Strangers. It tells true stories about the people we meet. That’s where I heard the story of Jenni. Jenni has cancer. The surgery to remove Jenni’s cancer the first time made it where she didn’t even recognize herself. Then she lost her health insurance, and the cancer came back. Then back again. Each time it comes back her survival rate drops. Jenni’s story made me check myself. It’s a sad reminder that things can always be so much worse. I could have loss my eyesight. What if I didn’t have health insurance? What if I didn’t have doctors as invested in my health as I am? I’ve even joined a support group online and seeing others’ stories makes it clear that my case could be so much more severe.

Even so, the truth is that I am writing this because today I felt really, really bad. My last flare up was four weeks ago, so while the Methotrexate maybe working some by making the flare ups shorter and not as painful, it’s not doing what I fully need it to do.

And so onto the next step: Methotrexate injections. Starting next week I’ll be injecting Methotrexate into myself once a week. For someone who’s scared of needles, this is definitely a mood killer.

But after listening to Jenni’s story, I realize how all of my whining and feeling sorry for myself is somewhat pathetic. I mean it’s tough, but it could be so much worse.

So come next week I’m going to learn to inject my meds myself and I’ll deal with it. Actually, no. I won’t just deal, but I’ll succeed and come out a stronger person for it. And as a stronger person that means recognizing that some days are still going to suck, but to be thankful for even the sucky ones and to remember to laugh on every single one of them.