Friday, December 2, 2016

Why I Cried On World AIDS Day This Year


I don't usually cry on World AIDS Day. But this year I did.

I'll explain why.

About a month and a half ago I was informed of a mandatory full-day statewide meeting that I and other faculty members in my division would need to attend. I was really bummed when I learned of it...because it was scheduled for December 1st - which is the annual commemoration of World AIDS Day (WAD). As part of a serodifferent family, WAD is very significant, and I cannot recall a year where we failed to acknowledge the day in some way. For example, last year my kids and I, along with our good friends, went to a WAD event at a local church that included an HIV seminar and a prayer breakfast.


Image is of six hands of different skin tones, each with a different message written on it in black ink (No Violence, Zero Stigma, Zero Transmissions, Stop TB, Zero Discrimination, Test & Treat HIV.") Below the hands text states: "1 December 2016. World AIDS Day: It is in our hands to end HIV and TB." Photo Credit: South African National AIDS Council

The year before that my kids and I and our friends spent the day volunteering at a local HIV hospice. We took over their kitchen and baked holiday brownies and cookies for the residents. Then we swept, straightened up a storage closet, and raked and bagged leaves (this is Texas; yes, leaves are still falling in December). The year before that we collaborated with a local church and our Ryan White Part D grantee to hold a family-friendly Celebration of Life.

In previous years I've attended WAD Proclamations with the County Judge and the Ryan White Planning Council, attended memorial services (though I try to avoid those because they focus very heavily on death and are too depressing for serodifferent families with small children who are trying to emphasize LIVING with HIV), and we've even attended an arts-inspired WAD event in the past (hosted by Hope Stone) that featured an interactive labyrinth inspired by the AIDS Quilt.

This year my friend Leslie had informed me of a WAD event that was being led by our local chapter of BLM. Not to mention the evening before WAD there was a huge launch event for the End HIV Houston Plan (I was a member of its HIV Research & Policy Workgroup and bursting from the seams with pride in our city for taking this ambitious step). AIDS Foundation Houston was holding its yearly WAD luncheon. There were lots of things going on, and NONE of them had a single thing to do with being at work all day long.

But I've been working here less than a year. And my program chair, statewide lead, and several other influential people were traveling to town to host this meeting. Nobody else who was required to attend was sending regrets - they obviously knew it was an important affair. I figured skipping it would be pretty problematic.

So yeah, to say accepting the fact that I was going to basically have to miss WAD did not fill me with joy. Quite the opposite.

If I can be frank with you all (which is the only way I know how to be), I felt very much like I needed to be at a WAD event this year. Noticed I didn’t say “wanted to be.”  I said, and I meant, needed.

Why needed?

Because for over a year now in many ways I have felt like my contribution to HIV advocacy has been stagnating. It’s not that I’m not committed - my commitment has not, and will not, waver. It’s not that I’m not involved; I’m in my second consecutive term as the chair of a multinational community HIV research body - the largest community HIV research group in the world, in fact. I have at least one HIV related conference call every week; I read protocols; follow list serves; subscribe to HIV magazines; belong to HIV related social media groups; lead a (very, very small but existing) HIV prayer group at my church.

And it’s not like HIV has disappeared from our personal lives either; in fact, I just hit up the pharmacist today for a refill of life-saving anti-retroviral meds...and we will be at the doctor’s office (the HIV specialist) for the quarterly check up in two weeks when our winter break begins (what a misnomer that is…”winter break.” It’s not merely a “break.” It’s more like a much-needed mental health period than a school vacation IMO, as probably any other educator will tell you; you best believe I’m counting the days until this semester ends and I can rest).

However, I have to admit that in the last year and a half or so I’ve felt more disconnected from my local HIV community than I have in many years. Though there are several reasons, the two primary ones are 1) that’s when I started working full-time, which was a huge change after several years of raising my kids and being able to devote a lot of my time to volunteer advocacy work, much of which was local and HIV related, and 2) we moved out to the sticks “boonies” country semi-suburbs outskirts of the city because our family had long outgrown the size of our home due to Teen Queen, my two Liberian Princes, the Ausome duo, and in the near future we’d thought, our sweet Almost Son from China. We needed more space, and homes farther away from town are more affordable...but not affordable enough for one income - not for a family with many members who have specialized health needs on top of an ongoing, costly lawsuit. Me not working was no longer an option for us.

As an educator, I’ve gained a lot by returning to work. But I’ve missed out on a lot of things too, because I no longer freely dictate my own schedule. In addition to that, during this period of my life I’ve struggled with tremendous mental health issues - which haven’t been helped at all by the ongoing legal saga we have been entwined in for over two years now. Ironically, while I’ve been blessed enough to somewhat maintain my involvement in disability and autistic causes, I haven’t been able to remain as active as my heart wants to in several HIV related matters that are very important to me. For example, I used to be very involved in our local Ryan White Planning Council (I even chaired it at one time); now I can no longer attend any of the meetings due to my schedule. I was unable to go to USCA this year; I missed AIDS Watch; I missed the Speak Up Summit; I missed HIV is Not a Crime II; I missed the Positive Living Conference and the New Horizons gathering. I was an invited session monitor, a moderator, and an approved media attendee for the International AIDS Conference this year, but because we needed money for legal fees, I had to forego my trip.

There’s much, much more to being an advocate than attending conferences, of course. There are lots of ways to further the cause, and there are many indispensable individuals in the global HIV community who attend none of these events that I listed and yet have a huge impact. But for me, I gain so much from being in those spaces, even if just being there virtually. I learn a lot - info that I in turn take back to others for the collective good of the networks I am a part of as well as the community at large. Additionally, there is a sense of camaraderie that I don’t have the capacity to describe that I cannot get from any other place. I am a member of numerous communities. They are all meaningful to me. I am proud of being African, being black, being a person of faith, being disabled, being a woman, being an educator, being gifted/twice exceptional...all of these communities mean a lot to me.  They are in some ways like my family.

But the HIV community is like my home.

There are NO words to describe what the HIV community means to me. How my family and I were accepted, embraced, supported, and loved on when the rest of the world - including many in the “Christian” community - threw us away, cut us off, spat on us. Because of three little letters - HIV - we were trash. Dirty. Damaged goods.  

People I’d literally known my entire life cut us off. (Have still cut us off.) Stopped speaking to us. Went to go get HIV tests because they’d eaten at our house or sat in our cars or their kids had played with our kids. People at the so-called church I once attended (a small church where everyone knew everyone) violated privacy laws to spread malicious gossip about the serostatus of my family and its members.

Some people stuck with us. I have always called that period of our lives “the litmus test.” God used that time, though it was painful as all h3//, to show me who was real and who was fake. Who I could trust and who I couldn’t. Who deserved to be in my family’s life and who didn’t.

And He restored what the enemy had stolen. Where fake, fickle, ignorant people had departed, God planted new people in our lives. People who were HIV positive and people who were HIV negative. People who didn’t have a problem with it, and loved us as we were. People who let me learn to trust again, to love again. People who encouraged me when I decided to spread my little baby wings as a budding advocate. People who applauded me when I said, “Eff this,” and decided I was done hiding...because I realized we had not a d@*n thing to be ashamed of.

People who patiently listened to me as I gushed on and on about the new class I was taking at the time about HIV and advocacy (Project LEAP, taught back then by the Center for AIDS Information and Advocacy, which is now a program of Legacy Community Health Services). People who supported me during the years that I ran a small play date group for serodifferent families and refugee youth, Positive Playdates.

People who smiled at me when I walked into local HIV meetings wearing a baby in a sling week after week (I'm African; we were baby-wearing before it was "the thing" to do). People who listened to me prattle incessantly about HIV research and this clinical trial and that new drug, even though they might not have known what I was talking about with all the acronyms and nerd-research jargon.

People who donated to my kids’ AIDS Walk fundraisers; people who challenged their family members and friends when they said stigmatizing or inaccurate things about HIV; people who allowed me to enter spaces where I might not have even belonged and allowed me a voice and a place behind them to offer my support and help because they knew I was sincere.

People who signed petition after petition I sent them and who joined me in rallying around things like HIV legislation in our state;  the proposed closing of our local HIV research site’s laboratory and office spaces; several consecutive proposals to defund Ryan White Part D; HIV stigma in the media; and more.

People who kindly educated me when I made social media and/or in person blunders and graciously helped me do damage control caused by the enthusiastic but not exactly-savvy feel first and think later approach I sometimes took until I learned better.

People who grieved with me when we lost Asia Johnson. And Rod Castle. And Philip Anthony. And Cicely Bolden. And Elisha Henson. And Sharon Maxwell. And Kalkidan Qualls. And Gene Ethridge. And Channing-Celeste Wayne. And Ruben Rosas. And Byanca Parker.

People I’ve met in person, and people I’ve only met online. People who have my heart. Because before any community called me its own, the HIV community let me and my family in. And though it isn’t perfect...it has infighting and drama and problems like any other community, it is home.

And y’all know how it is about home. You always miss it. My parents have been away from their home continent (Africa) for many years. But it is still their home. America is home too, but it’s not their first home. It never will be.

On World AIDS Day, I cried in the morning as I drove to work for the mandatory all day meeting. They were tears of sadness because I felt like though I am growing in some ways as an autistic advocate, I worried that I was becoming a huge f**k up as an HIV ally.

I did the dutiful employee thing, though. I went to the meeting.

After it ended, though, I didn’t go straight home. I stayed at work to host a presentation. A World AIDS Day presentation. For my students. At the college where I work.

You see, a few days before the meeting began, I decided that my big pity party wasn’t going to help anybody. I was still going to have to go to the meeting. I couldn’t get around it. I wasn’t going to have a World AIDS Day.

But it dawned upon me, finally, that just because I wasn’t going to have a World AIDS Day didn’t mean my students didn’t have to not have a World AIDS Day. If I was going to be stuck at work all day on World AIDS Day, somebody was going to commemorate the d@*n day, so help me.

Because I didn’t have much time since I came up with the idea at the last minute, I wasn’t sure how the event was going to go. I didn’t have much time to market it. I had to hold it at night after the meeting I had to attend had ended, and we don’t have a lot of students at night; most of our students attend during the day. I hadn’t gotten paid yet, so I couldn’t provide food, snacks, or any incentives, and I couldn’t make a request from my work budget in time to get any funds to use for the event because I came up with the idea so late. So...poor marketing (just my word of mouth to a few students, not even a flyer), no food, no fancy guest speakers, no captive audience, no real time to put anything together. I had no idea what to expect at all.

I finished my meeting, headed to where I was holding the event, and hoped for the best.

Imagine my surprise when I turned the corner. On a Thursday the week before finals week at an evening event that was not advertised and where no food or drink was being offered, ten percent of the student body was waiting for me to begin. (And a few more trickled in late after it started.)

I swallowed. I prayed. And I got started.

We did an icebreaker. I pulled up a few HIV awareness tests on the large screen (from AVERT) and we took the tests as a group, to test their knowledge. We talked about HIV. I showed them snippets of videos. They watched a few YouTube clips of Ashley Rose Murphy, Masonia Traylor, Aaron Laxton, Pedro Zamora, Hydeia Broadbent, Moses “Supercharger” Nsubuga, Cecilia Chung, Ryan White. They watched a few HIV criminalization videos from the SERO Project. They watched a few videos from HIVE Online about HIV and reproduction. They watched a video about PrEP. They watched a video about the importance of women and people of color participating in HIV clinical trials.

In between each video we had Q & A and discussions. A few were shy at first, but they warmed up. Many were very surprised to learn so much about HIV. Some were extremely angry when they learned about HIV criminalization. Five people came up to me at the end asking me where they could try to find out more about possibly getting PrEP, or getting more info about it (I gave them the number of the Legacy Community Health PrEP line).

I actually had to cut it short even though a few people wanted to keep going because I had only reserved the conference room for one hour!

I locked up the room...still in disbelief. I would have been happy if 2 or 3 people had shown up...I’d seriously expected that nobody would come at all, so any attendees would have made me feel like at least somebody learned something. I never expected this. Never.

Just like I cried in the car on my way to work that morning, I cried in the evening on my way home from work. But this time the tears were different. Not sad ones. Happy ones. Because I knew God had used me in a wonderful way. And that He had sent me a message. That even though things have changed, they aren’t over. He still gave me a World AIDS Day, even though I thought I wouldn’t have one.

And now I know that I will have one every year. I will make sure that the HIV community is given the focus it needs that day in hopes that people will be motivated to care and to take action the other 364 days. No matter where I work, no matter where I live, no matter where I am on that day, I'm going to speak up and speak out. As long as there’s stigma; as long as there’s need; as long as there’s new diagnoses; as long as there’s criminalization...until there’s a cure. As long as there’s life in me, there is something I can do. I will use my voice, my position, my knowledge, whatever I have to spread some knowledge wherever I am.

And that’s nothing to cry about.


Friday, October 28, 2016

I'm Nobody's Token


“You’re not really supposed to be here,” she said.


I was at the sink in the girls’ restroom washing my hands when the words shot out from behind me. I heard the words. I knew what they meant, but I didn’t know what they were supposed to mean. I turned around slowly, a little confused, to see a small group of girls standing a few feet away from me. It was only the fourth day of school, and I was new to this school. I still hadn’t figured out all of these people’s names. I stood there, slightly flapping my hands because they were wet from washing and I didn’t like the sensation. I wanted to reach for the paper towels to dry them, but that would require walking past the group of girls. And I wasn’t sure if that was a good idea yet, as they were looking at me in a manner that I perceived as not only strange, but somewhat hostile.


We stood there for what was probably only a minute but felt much longer. Then, the voice came again, from the blonde, pretty girl in the middle. Shirley? Sharon? I couldn’t remember. She said it again, louder, and with a defiant shake of her ponytail. “You’re not really supposed to be here. At this school. With us.”


“What do you mean?” I asked. She wasn’t making any sense. Of course I belonged in school. Didn’t everybody?


My mother had told me that it was against the law not to go to school. I had been asking since kindergarten if I could go to work with her or with my dad instead of going to school. Because though I loved some things about school like music class, art, theatre, and PE, most of it was boring. Baby books and dull math problems that I’d mastered years before. I usually finished all of the day’s work in about half an hour and spent the next seven hours of school either curled up in the reading center with one of my own books that I’d brought from home, being sent to the office by my teacher to help them sort papers or arrange files, helping the teacher out by working with the other kids in my class who were struggling with their work, or in the nurse’s office napping and watching TV. 


Why go to school, then? I wondered. I figured I could do most of that stuff anywhere, like in the employee breakroom of my parents’ jobs. I didn’t see any reason for me to have to be in a school building to do it. But my mom insisted. She even opened up the school handbook and showed me the “truancy” law. So that was that. I was stuck in school for the next gazillion years of my life. Even if I wasn’t learning anything.


This new school seemed different, though. It had only been a few days, but I could tell things weren’t the way I was used to. For the first time, I actually had to think before just answering problems. It wasn’t just a bunch of stuff I already knew. And I hadn’t had to help any of the other kids with their work like I was used to doing because the kids seemed to understand on their own. I missed my old friends, my old teachers, and my old playground, but so far this place seemed pretty nice. Everyone had been helpful and friendly. The same girls who were standing in the restroom had sat with me at lunch and played with me at recess all week. I didn’t understand why they were acting so weird today.


After I spoke, they all glanced at one another as if they were surprised at my question. No one spoke. “What do you mean?” I said again, louder. The wetness was making my hands feel really gross and I wanted to get out of the bathroom. I stared at them. No one said anything. This was annoying. I decided if they weren’t going to talk, I was going to go get some paper towels, dry my hands, and go back in the hallway where my class was to get back in line. Eager to dry my hands, I headed in the direction of the paper towel dispenser that they were standing in front of, holding my wet hands in front of me because they felt gross. As I neared them, the group of girls parted and backed up, squealing. I stopped in my tracks.


“Are you trying to “hit” me?” Shirley/Sharon screeched, her eyes widening.
“Hit you? For what?” I asked. This was getting weirder and weirder, and I didn’t like it. I flapped my hands up and down as I tried to ignore the gross feeling on my hands. I was trying to be polite and finish this conversation, but it was starting to get on my nerves. School brand soap was not like my soap at home. It had a strong perfumey smell and a slimy, gel-like texture I didn’t like. When you washed your hands with it, it never really felt like it washed away. It felt like it mixed in with the water and coated your hands even though no residue was visible. 


I used that soap because I had no other choice if I wanted to be clean, but I always dried it off as fast as possible. These girls were preventing me from doing that and I didn’t know how much longer I could take it. I swallowed hard and willed myself to wait, all the while my skin feeling like it was ablaze. My hands flapped again, harder, as if they were going to find their way to the paper towel dispenser whether I liked it or not.


“See how she keeps trying to slap me?!” Shirley/Sharon accused, addressing the girls next to her. “I’m telling!” She turned around and ran out of the restroom. The other girls followed. Alone at last, I lunged for the paper towels. I grabbed handfuls, more than I needed, because I was so grateful. I tore at my hands with them, rubbing and rubbing and drying and drying until they felt almost normal again. My heartbeat, which had quickened with the effort it took to try to keep from cringing while I waited with the gunk on my hands, relaxed. I threw the paper towels in the trash, grabbed the corner of my shirt to use it to pull open the door handle, and walked out to get back in line.


As I went to take my place in line, I noticed Sharon/Shirley and her crew were standing off to the side talking with our teacher, gesturing wildly. The teacher looked in my direction and gestured with her arms for me to join them. I approached them slowly, warily. I didn’t know exactly what was going on, but I didn’t like it.

Before the teacher could speak, I said, “She’s lying. I didn’t try to hit her.”
You’re the one who’s lying!” Shirley/Sharon exclaimed. “Everybody saw you reaching out to try to slap me! I have witnesses!” Her voice cracked triumphantly as she raised her voice to emphasize the word “witnesses.” Her friends nodded on cue. The teacher looked at them, then she looked at me. She had a disappointed expression on her face. I could tell she didn’t believe me.

“I’m not lying!” I said, feeling angry tears welling. There are few things I despise more than being lied on. “I was moving my hands, but not because I was trying to slap you. Why would I want to slap you? I hardly even know you!”

“Because,” she spat, “You know I know your secret. You don’t live around here. You’re not supposed to be going to our school. You’re not one of us. You don’t belong here. You -”


“Cut it out, girls!” the teacher interrupted. She slid in between the two of us as if we were about to come to blows. She then began lecturing us about acting our age and being respectful. I heard her voice, but hardly understood a word. I was there, but I wasn’t there. I stood there woodenly, my heart breaking as I mentally put the pieces together of the whole situation inside my head.


I was new to this school. The kids - especially the girls - had welcomed me. I had been worried about making friends, but everyone had gone out of their way to make sure I never sat alone at lunch and that I was included in the games at recess. Just the other day, Shirley/Sharon had mentioned having some of us come to her house to play. We had all written down our addresses and phone numbers on a piece of paper to give to her so her mom could call our moms and make plans.


I hadn’t thought about it because we all attended the same school, so I thought that it shouldn’t matter where we lived. But now I realized what was wrong. My address. They all lived near the school - close enough to walk if they wanted. I lived nearly an hour away. I was an “Exceptional Minority” transfer student who’d been admitted to the school because of my high grades and my high scores on district-administered IQ and aptitude tests. They, however, lived in the area. It was “their” school.


They’d known I was black (it’s obvious), but that hadn’t deterred them from playing with me. I guess because even though I was black, they thought I was “one of them.” But my address revealed otherwise. I didn’t live in a big, pretty house in a gated community; I lived in a tiny apartment on the other side of town where six of us shared two rooms and a bathroom. Our neighborhood was often on the evening news, and sometimes police helicopter lights kept us awake as they circled the apartment complex looking for someone. Most of our neighbors were nice people, families just like us who were regular, everyday people who just happened not to have a lot of money to live somewhere else. 


Yes, there were “criminals” in the area too, but they weren’t the majority. A lot of people were kind and caring. They took care of their kids, went to work, had hopes and dreams. But yes, we were all from the “wrong side of the tracks” - literally, as my apartment’s back door was less than a tenth of a mile from the railroad. My neighborhood friends and I used to race each other across the train tracks (not when there was a train coming, of course). As an adult, I still feel a sense of nostalgia when I hear the sound of trains, as it was the informal lullaby of my childhood for many years. It was not a wealthy nor a fancy area. But to me, it was home.


But my “home” wasn’t like their homes. So to them, I was an outsider. Someone who “didn’t belong.”  In other words, a token.


That was the first time I was basically called a token. But it wasn’t the last. Sadly, one constant in my life has been people thinking/assuming/outright saying that I am only, or primarily, valued for what I represent, not what I do or who I am. I have heard this all my life.


Sometimes they say it directly to me. Sometimes they say it to others and it gets back to me. Sometimes it’s merely implied. Either way, it hurts.


It’s usually stated more subtly than I’m paraphrasing it here. But for all the gilded coating, the words festering beneath have the same sordid meaning.


“He’s only dating you because he wants to see what black girls are like in bed. You know, if all the rumors are true.”

“You only got that scholarship because you’re black.”

“The only reason they chose you for that promotion is because you’re a woman.”

“They needed a disabled person, and you were the only one that applied.”

“They only voted for you because they felt sorry for you.”

“You only got accepted into that graduate program because they need to fill quotas.”

They only elected you because…”

“They only chose you because…”


In other words, you’re not good enough on your own. Smart enough on your own. Qualified enough on your own. Dedicated enough on your own. Pretty enough on your own. ______ fill in the blank enough on your own.


You are only good for what you represent. Not what you really are. Because, as Sugilite (voiced by Nikki Minaj) said on Steven Universe, “You...ain’t...NOTHING.”


You know what? There was a time I would have bought into that. Would have gotten sad. Would have cried. Would have felt like I was less than.


But those days are over. That person who would have doubted herself, who would have bought into that, who would have been beaten down by that...she doesn’t exist anymore.


She’s gone. And in her place, I stand. I am me.


My name is Morénike Giwa Onaiwu, and I am nobody’s TOKEN. I have value. I have standards. I have worth. I am good enough just by being myself.


Yes, I’m black. Yes, I’m a woman. Yes, I’m part of a serodifferent family. Yes, I’m a Christian. Yes, I’m autistic. I’m all of those things, and all of those things help make me who I am, but none of them alone is who I am.


I spent enough years of my life doubting myself and I won’t spend another minute doing so.


Poverty didn’t destroy me. Being a victim survivor of childhood sexual assault didn’t destroy me. Depression didn’t destroy me. Domestic violence didn’t destroy me. Having my children almost taken away didn’t destroy me (yet).


I won’t let doubt destroy me.


Let it be known now to the world: The God I serve says I’m fearfully and wonderfully made. I serve HIS purpose. I’m not here to serve your purpose. If there is anyone or anything that thinks I’m a token, I strongly suggest you re-evaluate that, because I’m nobody’s token.


And if there is anyone and anything that is affiliated with me in any way for any reason that is less than authentic, you have made a huge mistake. I’m a real, living, feeling person. I’m not some “box” you can check off somewhere to make you feel good, and if you got that impression, somebody done told you wrong, and if you interact with me long enough, you will experience that for yourself. If you need somebody that's just "for show" who's not going to question and if necessary even vehemently disagree with you if I don't believe in what you're doing, then I suspect you go get somebody else because I don't roll like that. You must not know 'bout me. I’m nobody’s “yes girl.”


I have my own mind, my own principles, my own boundaries, and I make my own d@mn decisions. I will never compromise myself for you or for anyone. I still have to live with myself. I still have to be able to sleep at night. I still have to be able to face my beautiful children and not only tell, but show them how to live in this crooked world with integrity. And I’m going to do that, and you will not stop me. 

This is a token - from Chuck E. Cheese's Pizza (photo credit: pullman dot com). I, however, am not a token.



Monday, August 15, 2016

Gone too soon: Missing Sandy, Channing, Gene, Charles, Sharon, and Uncle


There's been too much death lately. 

The hashtags and the "Pray for ______________" slogans have all began to run together in my head. Another bombing, stabbing, shooting...and
more lost lives. While the rest of us mourn for a few days/weeks and then resume our lives as they were before the latest tragedy, some people's lives are irreversibly changed when these events occur. Maybe it happened in their local community, or maybe they are a relative or close friend of the deceased. Or maybe there is some other connection. Whatever the case, they aren't able to just "move on" like the rest of us can. In a sense they are victimized twice: first by the incident that impacted them personally and second by the world that swarms in, lingers momentarily, and then dissipates nearly as quickly as they arrived, leaving those still actively mourning seemingly abandoned and forgotten. 


Convention dictates that I'm supposed to be all right with death. I mean, I'm a Christian, right? So death should be no big deal. There are a million platitudes about death and the afterlife and Heaven and Jesus and no more pain. According to all of that, they're probably in a better place. I will see them again one day. I should rejoice that they aren't suffering any more. Y'all get the picture. 


Platitudes don't do it for me. (And they probably don't do it for you.) They might technically be true, and they might be well-meaning. But they suck. They are hollow. They are poor consolation for a grieving heart. They might technically be true, but that doesn't make them suck any less. 


It doesn't make me feel better to know I'll "see them again in Heaven." Because I want to see them again NOW. Here on Earth. Other people can lie if they want to; I prefer to be real. I love the Lord too much to be fake. I am human, and therefore I am selfish. And as Heaven seems a long way off, whether or not that's the case, I would be dishonest if I said that thinking about seeing them again in Heaven in an undetermined amount of time in the future is any consolation when I am longing for one more day right here, right now. 


Given that Jesus wept after the death of Lazarus, I don't think I'm far off nor unspiritual in this. It's okay - normal, even healthy - to grieve. And there's no one way to do it. 


The only problem is that I don't know to do it. 


I have yet to find "my way" to "deal" with death - unless my way is to not deal. It's been like this as long as I can remember. (So I guess I actually do have a way, which is a way that's kind of a "not" way. If that makes any sense. It does to me.) 

I "deal" with it by "not dealing" with it. I always have. It's the only thing I know how to do and that comes naturally. I don't "do" all, or any, of the things that evidence-informed sources on grief suggest. I just don't "do" anything really, other than just go with it (initially) and then file it away (permanently).


It's hard to explain. Whether it is the death of a cherished relative, a friend, an icon, whatever, I have not yet in all my years of living developed any type of formal/established protocol that I can turn to. It doesn't always look the same though, in the beginning. Me at "ground zero" in 2012 probably looks radically different than 2016. The early days of grief differ for me. Sometimes I fall into a deep internal abyss. Sometimes I turn to eating for comfort. Other times I can't even think about eating. Sometimes I delve into the Bible and increase my prayers. Other times I can't even form a coherent prayer. Sometimes I am overcome with some emotion, like anger or sadness. Other times I become enveloped with a rapid sense of numbness and apathy. 


I never know what it will be, but one thing that usually happens is that at some point I find myself compartmentalizing in order to cope. It makes me sad to even type this because I know how it comes off, but it's true.  I don't think it's a bad thing, though I despise how it might be inadvertently feeding into the "autistic people have no empathy" stereotype. (Which is complete crap; if anything we have too much empathy, more than it is humanly possible to handle.) 


It's almost as if in order for me to function, because I don't really have an effective way to "deal" with how I am feeling, the other person almost ceases to exist. I might mention them periodically because it's not like I actually WANT them to not exist. But in general, they are essentially removed from my daily life, my consciousness, my conversation. They are not removed from my heart, not ever. But I push them to a place they have to dwell away from things in order for me to go on.

At the same time...

There are a lot of times in my life where I am aware that I can't run from death. Not if I call myself a mother. In some aspects of my life, not only do I not run from death, I must run toward it - intentionally. My fears, struggles, issues with death and loss don't apply then. They can't apply; I won't let them. I have to face death in some ways, and I do it willingly and flawlessly and regularly, because my kids need that from me and I will do anything, anything for them. You see, my children don't remember their parents. Their parents are dead. Unfortunately my kids remember absolutely nothing about them. Not what they looked like, not the sounds of their voices, not their personalities. Not the time they had together. Nothing at all. 


And as their mom, it is my job to make sure their parents' memories never die. It is up to me to make them come alive. To bring them up as often as I can in appropriate every day circumstances to make sure that they associate their parents' memories with more than just sadness. I've had to take paragraphs from refugee demographic files and form whole, living, loving people out of those scant details. Because their parents mattered, and they still matter. 


It isn't easy, but thank God I'm kind of creative. By resurrecting the details that I know of their parents and interweaving them into our lives through casual conversation, their other parents still live among us. They aren't trapped as stereotypical impoverished, sickly refugees who died while their children lived. Their courage, their hopes, their ingenuity, their love for their children, their character is fleshed out and breathes today. They live. They're real, and they are a part of my babies' pasts and also their present and future. They had parents before me and those parents will not be forgotten. I can't let their parents be pushed into the Crystal Room. I can't let them die - not any of them. 


But I have trouble doing this for myself. It's too hard. So maybe this post is a start. So here is my fledgling effort to grow up. To face death and loss differently. To let my friends who have recently died (2015 and 2016) still breathe. Starting with the most recent. (And d@mn, this is so hard to write. So hard.)


Sandy Kinnamon, 2016. When I think of Sandy, I think of fireworks. She was bright and beautiful and lit up the sky. Sometimes, like fireworks, she could be pretty intense. But also like fireworks, she left an impression. She was loving, giving, loyal. She was smart, funny, deep.

I miss hearing her ask, "How're you doing, chica?" I miss swapping stories about our kids. I miss talking about our shared pride as well as our shared struggles as black women. I miss praying together, venting, laughing together.  I just...miss her.


Channing-Celeste Wayne, 2016. It has only been a short while since she's been gone, but it seems like ages. She was encouraging and sweet. She was thoughtful. She was a fighter. Even as she battled enormous pain she still valued her role as an advocate, as epitomized by her determination to attend AIDS Watch despite her illness. She cared so much about fighting for the rights of others and living an authentic life. She was a unique person and she was taken much too soon. 


Gene Ethridge, 2016. He was such a cool guy. He viewed the world with a "glass half full" perspective. It's not that he didn't realize that there were problems in the world; he just believed those problems could be overcome. He was so nice, so hard-working, so sincere, so easy to talk to, so down to earth, so dedicated. His death is such a loss for our community. 


Charles Boyd, 2016. His death was so abrupt that it seemed unreal as I had spoken to him over the phone and literally the next day I learned that he was gone. He was a lifeline to my kids and I; because of him we had information about where they come from that was precious to us. Their family's compound before the war; their community of origin, their heritage. He was so helpful, and so funny. Always joked about my "white girl" American accent and teased me about being away too long from "the motherland, home of the most beautiful ladies" as he called it. He loved life and lived it boldly. He came into our lives so quickly, and due to contracting ebola was gone just as quickly, but even though we only connected for a little over a year, he was more than a friend. He was their family - and therefore, my family. 


Sharon Maxwell-Henkel, 2016. I still catch myself sometimes about text or email Sharon some interesting article about art or about women and HIV - and then I remember. She's gone. Sharon was a huge mentor to me in many ways. She had been advocating for disability inclusion since before I was alive and she had been involved in HIV advocacy long before those three letters had any personal meaning to me. I haven't deleted her number and her texts from my phone nor have I deleted her emails. She was reliable, assertive, truthful, strong, encouraging. Sharon is the advocate I want to be when I grow up - but she wasn't just an advocate. She was a friend. 


My dear uncle, 2015. Stories of his legendary painful spankings both thrilled and frightened me for years, even though I never received one myself. He disciplined hard. He loved harder. I only met him face to face a handful of times, but since my childhood he faithfully kept in touch with letters and calls. And later, even emails (always in all caps; Unc wasn't the most technologically advanced guy, lol). He was a devoted father to his kids, there for them even when they did wrong. He was a man of few words, but what he said was impactful. He only stood five feet tall, but he emanated strength and had a profoundness about him that far exceeded his stature. They say "black don't crack" and that certainly fitted him; he never seemed to age. Even when his head was full of gray his eyes were still wise and clear; his face smooth and boyish even with its stern countenance. His death leaves a void in our family. 


There's so much more to say about these wonderful people. Sandy was such a phenomenal activist, as well as a loving mom. Channing was a role model for not only transwomen of color, but for people living with HIV. Gene was a servant leader in the HIV community who epitomized racial unity in his genuine love for people of different backgrounds. Sharon was like that too - an fiery, yet loving disabled woman and cancer survivor living with HIV who encouraged so many and made huge inroads in HIV clinical research advocacy. Charles was technically a poor man in a resource limited setting, but he was overflowing with wealth where it counts - in his heart. My uncle was a faithful Muslim father who supported and fed into the lives of so many people. 


And still I cannot accurately illustrate them, not the way I want to. Short summaries don't do any of them justice. But how can I begin to capture them in writing? They were so much larger than life. Imperfect like us all, but still so powerful and impactful. Just writing this has caused me to rain tears all over my keyboard, and a sister ain't rich. I need this computer! I don't think this thing is waterproof, so I need to back off. This is a big step for me, doing this. But I owe it to them. They are worth a little discomfort and a lot of tears. And I think that they would do it for me. 


I needed to do this. I have blogged about the deaths of people whom I don't know but whose death hurt me deeply. Members of my tribe murdered by caregivers. Or by violence. Or by some other means. Celebrities whose work touched me and whose legacies I wished to honor. Things like that. And I'm glad I did. I am proud of those writings. I am proud to make sure to speak up about Jeremy and Elisha and London and Tamir and Eric and so many others. I will continue to do so, as long as I have breath in my body and the ability to type or to dictate words to be typed if I ever lose the ability to type.


But I seldom have a word to share about the people I knew and loved who are no longer living. Like the ones I mentioned above. And others who preceded them, like sweet Sister Caroline, like Asia, like Ramadan, like Dr. Kim, like Justina, like Eric, like my beloved grandparents (one of whom I lost on my birthday), like my husband's inspiring grandfather. So many people. 


I don't talk about them, and I try not to think about them. Because it hurts. Because it's sad. But maybe that's not the way. Maybe sometimes I DO need to talk about them. To #SayTheirNames. Even if it's just to myself. Even if it's just today. Even if it's just alone in my room on my face before God crying and screaming, "Why?" Because I don't know why. I don't understand.  I don't know if I'll ever understand. But they mattered to me. They mattered in my life. I don't want them to be forgotten. I don't want them to disappear, and I don't want anyone to think I don't care and I didn't care. And maybe I shouldn't, and probably don't, care what people think...but in this instance I do. 


I want the memories of my friends to live on. I want you to know who Sandy was. Who Channing was. Who Gene was. Who Charles was. Who Sharon was. Who my uncle was. I want the stories that depict their beautiful souls to remain on this earth where I live even though they themselves no longer do. And though I do believe I will see them again someday, that's not enough for me. I want to see a form of them now, today. Maybe by bringing them out of my head for a moment, even though it's harder than I can describe and doing so evokes tears, I can still "see" them and feel them in my own way before putting them back. Maybe that's a good thing. Maybe that's healthy. 


Maybe it's worth the momentary pain if it also brings forth something. What exactly is this all even accomplishing? Not exactly sure, as this is unchartered territory, and not something I plan to do regularly and I didn't exactly think this through. I guess I hope by mentioning them those who also knew and loved them got a moment to bask in their memory...and those who didn't got a chance to glimpse the awesomeness of who they were. So...I suppose mission accomplished then?


Even though right after I press send they are going right back in their place in my head where they live peacefully...I am okay with that.  For me, maybe this way is healthy too. That's what works for me. 


There are other people like me out there too. Please don't make the mistake of assuming because we don't express grief in the conventional way means that we don't care. Some of us openly cry; some of us don't/can't/won't. Some of us mention our lost loved ones often and look at/display their pictures and/or other remnants of their life on earth; some of us never mention them at all. Some people bury themselves in work or hobbies or people or substance use or food or whatever. Or bury themselves inside themselves. There are probably as many ways to grieve as there are stars in the sky. Some ways might not make sense to you, or to me. But that doesn't mean that person didn't, and doesn't care, even if it isn't easy to tell how they are feeling. 


I have my way, sort of. I don't understand my way and I don't even really know if I fully agree with my way.  But it's my way; it's what I know how to do. It works. This other way that I tried today...I don't think it's something that I can/will/want to do often, or maybe even ever. I can understand its merit. I can see how some people find it helpful, and I am grateful for what it can do. For me, however, it isn't natural and it takes too much from me. I think it was worth it today, even if it never happens again, but I don't think, for me, and maybe some others, it is necessarily "the" way. It is simply a way. 


I think I am fine with that. 


And I think God would smile down on that realization. And that they would too.