Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

Mary Kay Diakite, LMSW continues her work on HIV/AIDS helping agencies service clients, as well as improve programs and set policy as a government worker. Prior to this, she ran a family case management program for African immigrants living with HIV/AIDS in New York City. Mary Kay taught for five years as Adjunct Professor at both Rutgers and Monmouth University Schools of Social Work. For the last eleven years, she’s been working with refugees, immigrants, asylum seekers, survivors of torture and detainees. She has run school-based programs for traumatized refugee and immigrant children in three public school districts. After 9/11, she was recruited to work with traumatized Arab, Muslim and South Asian communities. She conducts psychological evaluations on survivors of torture who are seeking asylum and being detained at the Elizabeth Detention Center. A former Peace Corps Volunteer, she served in Mali, West Africa from 1996 to 1998. She also spent three summers conducting cross border conflict resolution workshops in the Democratic Republic of Congo and in Rwanda. She is fluent in both French and Bambara.

Editor’s Note: Mary Kay Diakite (pronounced Jak-e-tay),and I met when we read our own poetry at the Burchfield-Penney Art Center in Buffalo, New York, in 1992. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.

5/3/12 – Lupus Awareness Month

Lupus Awareness Month Fact #3: Lupus develops most often between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve more rapidly into serious health complications.

Problems in Bamako continue. The airport is closed, there have been multiple shootings, with reports of anywhere between 25 and 150 deaths. The US Embassy is closed. The coup leaders are building up the case that there are foreign mercenaries from neighboring countries trying to take down the Junta. Not everyone believes this story, and the truth becomes harder to decipher.

The current president has stated that he will not continue past his allowable 40 days reign in office. What this means for day 41 is not yet known.

5/4/12 – Legs, laughter and new friends

Lupus Awareness Month Fact #4: In Lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The result is the production of auto-antibodies that cause inflammation.

Once again, the legs are cooperating. I’ve had very little pain, and they feel strong and sturdy. It’s a joy, a joy that I cannot take for granted, but can fully appreciate each time it happens.

Work was fine, and there was laughter. First my boss’s boss and I just broke out laughing at something simple and silly, and as always, it feels so good to laugh. Then later on, I can’t even remember why, I must have been laughing again, because a co-worker exclaimed that she had never seen me laugh so much, what’s going on?

Wow. Her comment was really telling. I am at this job exactly one year (May 2nd) and my Lupusversary is almost one year (May 12th). When she said that, it occurs to me how much I have changed. There was a time in my life, in fact I think the first 42 years, when I laughed and giggled all the time. There was joy around me, within me, and it spread. What happened?

It occurred to me that there is no way that this group of people I work with will ever know who I was before diagnosis. It occurred to me how much easier it is to have fun and play and think of funny things, and find humor in things, when you are not in pain, having weird unpredictable things happening in your body, and tired.

My first response to her comment was something like, “Um, I can walk.” But really, what normal person who is not sick can fully grasp the full pleasure of walking, or is going to understand that comment? So I played off the comment by telling a joke. Can you believe? Here it is, “A guy walks into the Bureau of HIV looking for a job, and instead of saying, Ryan White he says Barry White. Yeah, he didn’t get the job.” People were rolling.

See, I am still here. I am still in here somewhere. I miss myself. I miss who I used to be. I miss who I used to be for other people. And we just keep going.

It’s absolutely gorgeous when I get home from work, and it is Friday, so I am determined to get the little girl at least to the mansion to play with her soccer ball in the yard, or even better, down to the playground.

We do get to the mansion and she is not interested in playing outside, so we’re back inside. People are getting used to seeing us there. We hang out, find a kids activity for her to do, and then head back outside. As I’m leaving I tell them that we have got to find a way to keep this mansion open after the artists leave in June. Fingers are totally crossed on that one.

Now, we’re at the playground, and Sabou is big enough to fend for herself and I find a nice bench to sit on. Well, the three ladies on the benches next to me are all speaking Bambara. I try not to listen, I try not to get involved, but what a joy to hear Bambara, to hear a language I understand, since the predominant language where I live is Spanish, and I don’t speak it and that has been a great impediment to making friends.

Finally, I can’t take it anymore. I lean over to the woman sitting next to me and ask in English, so as not to freak her out, “Where are you from?” She’s from Guinea. I say also in English, “and you speak Bambara?” She says yes. So I say in, Bambara now, “I also speak Bambara. My husband is from Mali.” Well, she lets her friends know, and it turns out that the woman sitting next to her is from Mali, Bamako to be exact. So now the conversation turns to the events in Mali, comparing life in the US to life in Mali, and all the stuff of getting to know each other. We just click and it feels so good. She’s got a girl who’s three and a boy who’s six, and they both speak Bambara. Sabou got to watch me interacting in Bambara with these ladies in the park. She even started playing with their kids and sharing her snacks with them. By the end of this amazing park experience, Sabou was answering “Owo” to things instead of yes. I was so proud. And we exchanged numbers. She lives two blocks away from me and comes to the park a lot. We can get together whenever we want.

And it’s happening. I swear it is really happening. I am starting to feel at home where I live. I’m starting to make friends and so is Sabou. When Youba comes home I tell him that I really don’t want to move right now. I mean a bigger apartment would be fine, but not a new neighborhood. I really want to see what happens by just staying here, staying somewhere, having roots and being a part of something, for me and for Sabou. I don’t have the energy to go start out somewhere else and take another three years to feel comfortable and get to know people. And where else will I have access to so many people who speak Bambara? Who can help Sabou understand who she is and where she is from? Crazy to say, but I really think I am becoming a New Yorker, and it’s hard to imagine living anywhere else.

And after this amazing, happy, pain-free day, I’m settling down to relax on the couch and it hits, “OUCH” this weird annoying pain in my neck? My neck? Like in the back towards the left. If I lie on my back, it hurts. If I lie on my side, either one, it hurts. What is this? So uncomfortable is all I know and I hope I can sleep tonight.

5/5/12 – Busy Day and No Tantrums!

Lupus Awareness Month Fact #5: Some people have genes that allow them to develop lupus. Factors that may trigger lupus in these people include infections, ultraviolet light, extreme stress, certain prescription drugs, and certain hormones.

Today there were many things planned and I was determined to get to them all. What an adventure. We started out the day going to La Guardia airport to pick up some suitcases that friends are bringing to Mali next month. A family trip with the three of us in the car so rarely happens that it was actually fun. Sabou wanted Daddy to sit with her in the back seat and he happily complied.

Then we dropped off the car, he headed out to school and Sabou and I headed off to a make-up class of soccer. This one was inside in the basement of a church. It was two subway rides and a little bit of walking, and Sabou was awesome. She was so well-behaved the whole way.

At the class, I didn’t know what to expect because she didn’t know the space, the kids or the coaches. Well, this little girl got right in there. She didn’t need me on the field or anything. The coaches included her like she was one of them, and she had a great time. Now, if we can just help her remember not to touch the ball with her hands.

I also noticed that she was much better at responding to the coaches now and following their lead and doing what they say. Such an improvement and it made me feel so proud watching her. Several times she came over to me to give me a hug and then ran right back into the class to get some more soccer time. At times I found myself just watching her in awe of who she is, who she is becoming, and what an amazing a little girl she is. Proud Mommy Day.

I also realized how much nicer it is to play outdoors, so as long as I can make that happen for her, I will.

Then it was off to an annual Lupus event complete with free massage, make-up, hair, skin care, meditation, and a speaker on non-medical self-care with Lupus. It was incredible.

First off, we had to take two buses to get there, and Mommy of course got a little lost. Sabou was fine with that, as long as she knew. “What happened?” “Mommy got lost.” “Oh, Mommy lost. OK.” You know, something like that. And at the event she was just amazing. We both got hand massages from a Mary Kay consultant, and Sabou just loved being a part of the action. I saw folks I’ve met at other Lupus events, and got to hang out with the social worker from SLE Foundation, who was happy to see Sabou again. This is the first time she’s seen her since the outburst at the support group so many months ago. We had a lovely lunch. Sabou got to do some art work at the Vision Board table, and waited patiently while Mommy got her free haircut.

We arrived too late to get a massage, but they shared the greatest news at this event. A group of Licensed Massage Therapists in New York State have decided to provide Lupus patients with a sliding fee scale of reduced cost massages. I am so excited! It’s OK I didn’t get one today, because I know that massages are now in my future, which is awesome, considering the bizarre neck pain I had last night. This is an event I am making sure to get to every year!

Then it was another bus ride back to the two subways to get home. Again, Sabou was great on all the public transpo, playing with other riders on the bus and sitting nicely next to Mommy on the subways. Such a good girl. And I’m relieved because this day is not over yet.

See, I’ve got an AVP Council meeting scheduled at the mansion that we have to get home in time for. So it’s home, repack the bags for another trip out of the house, and we’re off. We hang out at the mansion for a good 45 minutes, and no one shows for the meeting. No bother, I met some great people just sitting there, and I am so grateful to have that space in my neighborhood. I met the program director who is interested in keeping the energy flowing in the building and holding events that are meaningful to the community. I am so excited to see what can be done.

Well, Sabou had had enough. No one came, so we went home. But it’s never that easy. See, when we got to our building, there was a family trying to get into the building with birthday gifts in hand. We rode the elevator together and they got out on the fourth floor. Sabou and I got out of the elevator so that they could maneuver their stroller out easily. Well, the mother of the birthday girl saw Sabou and me and immediately invited us in. The birthday girl is a little girl who is turning three, and who Sabou knows from seeing around the building and when us two moms are talking together. We couldn’t resist, I mean there was a clown in there and everything. OMG – it was so incredibly cute. I mean I don’t speak Spanish, but there is so much that can be understood nonverbally. And of course, Sabou understands Spanish, so she got all of it. He did funny antics with both the kids and the adults, did face painting, and even got Sabou to do it for her first time; a little flower on her cheek. She was so proud. Then came the magic tricks and the clincher – cotton candy. It was hysterical to see Sabou’s reaction to the cotton candy. She’s never seen it before, and she was pretty disgusted by it and wouldn’t eat it. Once the clown left and the show was over, then the kids were more free to just play and just play they did. She had a fantastic time playing with the birthday girl. They were like two peas in a pod. It was so adorable. Now, I am determined to set up some play dates with them as well. I also thanked the mom so much and told her I’d be inviting them to Sabou’s birthday in August.

And again, just like with the soccer class, I found myself just looking at Sabou and feeling so proud of her, so happy for her, and blessed to be witnessing her growth. These are amazing moments.

Can this day get better? We left the house at 8:30am and arrived home at 8:00pm. Daddy was there, and that’s always a hit with Sabou. They ate dinner together, played together, she got her shower and headed to bed. I have absolutely no doubt that she’ll sleep all night.

This was a GREAT New York City day, navigating all over Manhattan with the subways and buses, with Sabou in tow, going to all kinds of neat and fun events, and once again, I have this feeling I’m not leaving this neighborhood anytime soon.

5/6/12 – Soccer and the Met

Lupus Awareness Month Fact #6: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Consequently, lupus can take three to five years or more to diagnose.

This morning was yet another soccer class, this one the regular one in Central Park. And it was so different from yesterday. It seemed like Sabou was back to feeling uncomfortable, not responding to the coaches, definitely not as much as she did at the Saturday class. So, what’s different? One is inside and one is outside? I have no idea, but I much prefer the outside class and her chance to play outside as much as possible.

Then a friend whose family member died of Lupus met us for an adventure. Our big plan was to check out the Metropolitan Museum of Art. It just seemed to me that it wasn’t far away. Well, it turns out that neither one of us really knew where it was or how far it was going to be. But, since Sabou takes every moment as her adventure, and that walking on sidewalks, chasing pigeons and hugging trees is just as enjoyable as sitting on a bench eating snacks, it didn’t really matter how long it took us to get anywhere. It was wonderful to catch up with my friend and her life now. So many options open to her.

Well, when we finally got near to the museum, we found this amazing playground right next door to it. Sabou looked at me and said, “Mommy, Sabou? Sabou park?” And how could we resist? I have no idea how long we stayed there, but we definitely lingered. Sabou made a little friend and they were having a blast climbing up the slide backwards. What was really cute was that when the family was leaving they brought the little boy over to say good-bye to Sabou. A lovely moment. You gotta hang on to these lovely moments.

Now, Sabou was exploring on her own. It was a big playground with so many nooks and crannies and places to climb and crawl into, it was hard to keep her in our sight at all times. Well, we did the best we could keeping up with her, and then it happened. A man came over to me to let me know that a girl had fallen, he thinks she is ours and a man is carrying her around looking for her Mom. Oh man, bad Mommy. I didn’t see her fall.

We ran over to the man, and I took Sabou into my arms. She had some sand on her face, but no marks, no sign of pain. I’m thinking, because I know my girl doesn’t usually cry when she falls, that the parents who saw it freaked out and that freaked her out. I don’t know, but she calmed down easily and it was easy to get her out of the playground.

By now, it’s mid-afternoon, and we’re just entering the museum, and of course, I am hungry, Sabou needs to eat and my friend is craving a coffee, so we give a few bucks donation, wander through the museum and end up in the cafeteria for most of the visit. But, you know what? It was just fine for us. All day, we had time to chat, to catch up and to play with Sabou. It was great.

Now, it’s time to go home, back to the bus and the subway and all I can do is hope for the best. We had the whole back section pretty much to ourselves, and Sabou is taking as much freedom as she can get. I’m exhausted from the day, and let out a yawn. Sabou notices and asks me loudly, “Mommy tired?” I respond, “Every day,” which leads to an uproar of laughter in the back of the bus. Yes, I guess we really are a sit-com.

Now, we’ve also invited Dogomani and the kids over. It’s been a while since we hung out and the kids got to play. I called them to let them know we were home, and then crashed, absolutely crashed asleep on the couch. I think the doorbell woke me up. I made some popcorn for the kids; it’s the only thing I could think of.

Dogomani looked right into my eyes and said, “You’re tired.” Well, we both were. We just chilled out on the couch and the kids played. No hair braiding today. Sabou didn’t want it and Dogomani and I were just too tired to take on the challenge.

See, Dogomani hosted a group of ten Malian men from the Kayes region, where her husband is from, at her house, and she had to cook Malian food for all of them. She cooked 10 chickens. It makes me tired to even write it or think about it. She also had to completely clean the house twice – once before they came and once after they left.

I’ve been thinking a lot about women’s plight in our society. The men go to meetings and discuss issues, and the women are expected to cook and clean so that the meetings that they are not invited to can take place and the men are fed and happy.

I see this with the variance in level of freedom that I feel in my own life. It’s not me, it’s Sabou and me. I am a Mom like all the time now. It’s my identity. Yet, Youba still has so much freedom to go to school (I quit), to go to Paris when he wants on his own, to leave the apartment whenever he wants, because he knows that I am there to take care of Sabou. It gets to me, not all the time of course, but definitely there are moments.

And this is not to say that I am unhappy. I mean I love Sabou, she’s a fantastic kid. I guess I just had these visions of partnership, equality, family vacations, soccer classes together, and stuff like that. I was raised in the US. My husband’s norm is what I listed above. Even if the woman works full time outside of the home, she is still expected to provide her household duties, cooking, cleaning and kids. It can get me down if I let it, but all I have to do is look into Sabou’s eyes, or hear her laughter, and then I’m just sad that Youba is choosing to miss all of this. I am not giving up on the possibility of him someday attending a soccer class, not for a long shot.

So, here’s the creative thing I did tonight. I asked Sabou, “Tell Daddy what happened in soccer class today.” Well, the girl responded, not only with words, but she began acting out the class as the coach, complete with whistle.

“Daddy, sit down.” She showed him the hand movements for the song, and I sang it, with Sabou humming along and adding in the few words that she knows. For example, “We never touch the ball with our…” “HANDS.”

Well, that was adorable. Now it’s “Daddy, get up.” He doesn’t move. So, she helps him get up, just like the coaches do to her when she doesn’t get up on command.

She shows him how to do “Ding Dong” and step with each foot gently on top of the ball. Then she dribbles it, does the ‘ding dong’ and then places the ball into an upside down djembe drum, much like the upside down traffic cones we use in class.

I couldn’t believe it. She really takes everything in. “Daddy, sit down.” And she shows him the next activity. She lines up two balls and jumps over them, blows her whistle, “Get up Daddy” and now it is Daddy’s turn.

When we are all done with her activities, the whistle blows, “Sit down,” and we do the final song and chant for the day. It was one of the most amazing things I have ever seen her do. She is an amazing and very funny girl.

Sabou goes to bed at 8:00pm, and I pass out on the couch at the same time. Long day.

5/7/12 – Was and Am and Boys

Lupus Awareness Month Fact #7: There is no single laboratory test that can determine whether a person has lupus. Diagnosing lupus involves analyzing the results of several lab tests, a review of the person’s entire medical history, and the history of close family members.

Today was a half day meeting at work. The introduction was a little unique and we were asked to share our favorite pastime or something we like to do when we’re not at work. My mind went blank. What do I like to do? What do I do? I got stuck in that self-talk about who I was and who I am. The first person shares, “I’m a published author and nationally known poet.” Dag. Set the bar a little higher please. And that comment sends me even further down the ‘was and am’ road reminding myself, I used to be too. I used to publish poetry, and do poetry readings, and all those things, and I used to travel, and I used to facilitate conflict resolution workshops in prisons, in war zones, and I used to, I used to, and I used to.

But all that time and energy wasted and now it’s my turn to share. “I play a lot of legos and puzzles with my two-year old.” That’s what I said; that’s who I am; that’s what I do now. Sigh. I need to somehow get past this conversation and make it all OK with myself.

And I need to remember that I am STILL a published writer. I’ve got this daily blog going on, educating people about Lupus, parenting in NYC with Lupus, and most recently the political turmoil in Mali. I’ve still got it. I’ve got to remember that. Unfortunately, I didn’t remember fast enough at the meeting, but it definitely came to me later.

The cutest Sabou thing that happened today was when she looked at me in the middle of dinner and said, “Mommy, boy.” “Mommy, boys.” I was shocked. I never heard her say the word before. I didn’t know what to do, so I responded by listing out all the names of boys at day care and her cousins. She repeated each name as we went. “Aaron, boy; Victor, boy”… When we were done I said, “Girl.” She said, ‘HUH?” I said “girl, Sabou girl.” She repeated. And I went through each girl at day care and her cousins. At the end I said, “Daddy boy. Mommy girl.” I have no idea what she took from this conversation, and I consider it our first of many on this subject. And it bothered me how black and white I was making gender out to be, not taking into any consideration how each of those kids or even my daughter may view their own gender identity. And we just have to keep learning and getting better at this as we go.

It reminded me of a class I took in PhD school on theory. The professor was looking for a simple dichotomous variable to discuss, and she chose gender. I went off in class, as I am known to do. “What do you mean gender is dichotomous?” Well, I was teaching Diversity and Oppression at the school that semester and we were at the point in the semester when we focus on sexual minorities. Nothing is clear cut. Nothing can be clearly defined as the researchers would like them to be. I prefer the gray and the chance to really explore nuances in differences and not simplify things for the sake of the limits of the scientific method and the ease of measurement. I think we end up missing a lot of the important details and experiences along the way. But I digress.

In Mali, the coup leader is making it pretty clear that he has no intentions of giving up power in the near future.

5/8/12 – Learning to stay calm

Lupus Awareness Month Fact #8: Lupus is treated by a rheumatologist, a physician who specializes in conditions affecting the joints and muscles. Some people with lupus may need additional care from specialists, like a dermatologist for skin problems, a nephrologist for kidney disease, or a cardiologist for heart complications.

Well, I guess Sabou woke up on the wrong side of the bed. She was crying and having tantrums about every little thing this morning before work, and continued this behavior after work, until bedtime.

For some reason, it did not drive me crazy like it usually does, and I didn’t give in. I just clearly kept telling her no, and hugging her as she cried, yes, she did let me, and didn’t hit me, and I explained calmly in her ear why the answer was no. Well, it seemed to work pretty well. She got over things and by the end of the night, we had been successful in eating, getting dressed for bed, pooping on the potty, brushing our teeth, getting the pony tails out, and playing with puzzles. I say successful, because even though we accomplish most of these things (the potty being the not so consistent one) each night, it feels like a major accomplishment every time. I kind of hope that feeling doesn’t wear off.

Inspired by the Lupus event this weekend, and it being Lupus Awareness Month and all, and the fact that random Lupus brochures had already showed up at work, I brought my own in and set them up on my cubicle next to my Lupus walk poster. The brochures I brought speak more to my issues. One is about joint and muscle pain and the other speaks to cognitive and behavioral issues. I can’t remember their exact titles. But there they are In my cubicle.

The cool thing that happened at work today is that a co-worker and I completed an abstract that we are submitting to a national meeting which will take place in DC in November. Since she is not interested in presenting the material, my name has been listed as the presenter. I’ve got time to figure this out. I’ve got time to figure out how to make this happen if I am in fact chosen to present. I told her it’s my chance to prove to myself that all in my life is not lost, and that I can still do stuff like this. DC is not that far away. I feel hopeful, one year after the fiasco in Atlanta, when I couldn’t even walk never mind get on the plane, to attend the national conference where I was supposed to be presenting. This seems feasible and even possible, and I am feeling a glimmer of hope.

We learn from Youba’s family that his uncle is very sick in Bamako, so his Mom has traveled there to be with him. I am concerned for her safety, but understand that she’s where she needs to be right now. I am pulling for both her safety and his health.

5/9/12 – Stomach Pain and Nausea

Lupus Awareness Month Fact #9: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling. Medication and mind-body therapies can be used to help control the pain associated with lupus.

Today was one of those great days where at some point you realize that you don’t feel any pain, like none, and no fatigue, and no weakness. It’s a moment of joy and relief and gratitude. Today was one of those days.

The only funny Lupus thing that happened at work was that I was doing a power point and in the middle of it I realized that about half my slides weren’t there. I just went with it and didn’t let on to the participants, but in the back of my mind, all I kept thinking was, Lupus Fog. But it didn’t upset me, or frustrate me, rather it just made me smile and laugh at myself. Maybe the lack of pain makes things easier to take. I am determined to remember to include all of my slides the next time I present.

Then when I got home and picked up Sabou, Youba was home. It was great. He doesn’t have class tonight, so we’ll have time to hang out together. But first I am determined to get my girl to the park. I have no pain and no fatigue and she deserves a little outside time.

What a great decision. Two of the ladies I met last week were there, and we had more fun times laughing, getting to know each other, and the kids playing together. At some point another woman from Mali showed up, heard us speaking Bambara and joined in. She also has a three year old girl. And I’m serious, so far we all live within 167th and 164th Street. True neighbors. It was a great time at the park.

Sabou played with the kids, and met some new ones. Instead of climbing on the jungle gym, she was picking flowers (well, actually weeds) with a little Spanish speaking girl and taking turns throwing them out in the garbage. My girl’s favorite thing besides eating is throwing things into garbage cans.

It was adorable. She’d look at the girl and say, “Play?” and the girl would reply “Si.” And off they were. At one point, a boy came over and was bothering Sabou, hitting her pony tails. She took a step back from him, put up her arm to protect herself from him and said, “Don’t touch me, OK?” She didn’t hit him back, but she definitely stood up for herself. Then she came over to me to let me know that the boy had touched her hair, and she went right back to picking weeds with her new friend.

On the way home, I remembered that I had been invited to a community meeting at the Nursing Home across the street. Yes, three years later, I finally find out where people are meeting in the community. We decide to stop by. The room is packed. We sit in the back, where the vending machines are. Sabou won’t shut up. “Mommy, I want that.” But of course, Mommy doesn’t have any money. So after only about 10 minutes, we get up to leave. Besides that fact, they didn’t have a microphone and there was absolutely no way to hear what they were speaking about.

The woman who invited me to it is someone who I met at the mansion and then bumped into on the street, came over right away when she saw me leaving. She wanted us to stay and offered to buy Sabou something out of the vending machine. I told her that was OK, and recommended that they think about getting a microphone for future meetings. She then invited us to a party at one of the Yankees restaurants at the end of this month; $25 per person. We’ll see, but how nice to keep getting these invitations and chances to meet people in the community.

Then we got home and Youba had bought us Jerk Chicken, Sabou’s favorite, and the three of us enjoyed dinner together and then put Sabou to bed. Youba and I then had some time alone before he needed to go to work.

Well, then it hit, really strong. This intense pain across my stomach, making my shoulders ache with pain and my entire upper body feel weak, and it’s hard to breathe. The only thing I can think is indigestion. I can’t take it anymore, and now I’m nauseous. I think that everything I ate during the day, or maybe the last week, just came pouring out. And you know how usually when that happens you immediately feel better? Yeah, um, not this time. That ring of pain just stayed. Youba made me some tea with lemon and sugar, and I passed out asleep for a few hours.

When I woke up, OMG – that pain was still there, and had spread to my back, and head. Horrible. But no more nausea. My friend talks me into taking Pepto Bismol, and there is no relief. When I lie down it hurts too much to sleep. There is no comfortable position I can find.

So, I go to the only place I can go at times like this: on-line support groups. Love those. Open 24–7 and no matter what time of day or night, someone is on-line. Well, this time it’s someone who just moved to NYC and is at the ER. She has no one, no friends, no family. I am here in NYC. I will find a way to see her tomorrow after work, if I make it to work. And I reached out to the SLE Foundation and their Young Leaders members to see if others can go as well. Yup, always the social worker/community organizer. I am inspired by the clients I used to serve and how pro-active they were in visiting HIV+ friends in similar situations. They taught me about living with chronic illness, probably more than I ever did for them.

As for Mali, well, I guess the mercenaries have arrived, but not from the neighboring countries, jihadis from Pakistan have arrived in the north to help Al Qaeda and the Islamist movement there. While in Bamako the search for, arrest and detention of foreigners continues.

5/10/12 – World Lupus Day and F*#K you Lupus

Lupus Awareness Month Fact #10: Lupus can be an expensive disease. The average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.
“And I’ll add another figure for you. The only drug to be approved for Lupus in the last 50 years is Benlysta. It costs $35,000 per year, and most insurance companies don’t want to cover it.”

It’s World Lupus Day. I am completely exhausted because I haven’t slept, I’m terrified to eat because I don’t want to puke again, and I’m scared to go to work because I have no idea what to expect. Today, on World Lupus Day, I just want to say F*#K you Lupus.

There are things I’m supposed to do; there are places I’m supposed to be, but I’m home, weak and tired, afraid to eat and worrying if the intense pain will come back and when is not on my to-do list.

I decide to stay home from work to wait it out and see if I’m better. So here on World Lupus Day, I feel defeated.

I dress my girl in purple in honor of the day and send her to day care. No use in her seeing me like this.

I rest, I can’t look at food, stay with simple toast and tea. By the afternoon, it’s too late to go to work, since it takes an hour to get there, and I realize I’m going nowhere today. Defeated.

Then I remember the young woman who is new to NYC and alone and probably getting horrible treatment at an ER in NYC, and I’m like, well, I’m not great, but at least I’m somebody, and I decide to trek out and see if I can at least go through this horrible process with her. Get out of my pity party and be there for someone else.

I call the ER, and she is still there. I head out. Was this a good idea? I have no idea. When I get to the ER, she is already gone. They tell me where she is. Really, why am I doing this? But now I am on a mission, to get out of myself. I go to the Rheumatology clinic where she’s been sent. She’s not there. They didn’t take her insurance and they sent her to a different clinic. Lovely health care we have here in NYC. I go to the next clinic. I may be weak, but the legs are working today. I am quite sure she is not so lucky. When I get there, she is in with the doctor and I wait. I’ve seen her face online, so I’m sure I’ll recognize her when she comes out. We meet at the elevator. I say, “Are you Sarah?” She says, “Yes.” I say, “I’m Mary Kay.” She reaches her arms out and we hug, “You really came.” I follow her through all of her appointments, listen to her amazing life stories, and am so glad I did this.

Do I think I was the best person for her at this time? Not with my weakness, negative energy and negative attitude, but I was somebody, and she was truly inspiring.

The most amazing thing that happened today was when we were sitting on a bench outside waiting for her next appointment. A butterfly (the symbol of Lupus) flew by us and wouldn’t leave. She got up and took a picture of it when it landed. On closer look we realized that one of its wings was broken. It was flying with broken wings. I looked at her and said, “Just like us.” She leaned down and it flew to her shoulder and just stayed there. She took pictures of it on her shoulder. We were amazed, thankful for this sign, and gained a bit of strength and hope to move onto the next appointment. X-rays and biopsies and it’s time to go home. I get her in a cab and she’s off and I make my way back to my life in the Bronx.

5/11/12 – More fun in the Park

Lupus Awareness Fact #11: African Americans, Hispanics/Latinas, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.

After work, it was back to the park. I was so hoping that my new Bambara-speaking friends would be there with their kids. When we arrived at the park, I saw one of them leaving. She said, “Oh you came, I’ll be right back.” Within no time, she did return with her two kids. Now Sabou knows the kids, and they know her and she immediately starts playing with them. There’s another woman from Cote d’Ivoire who I have not met before, so now there are four families who speak Bambara for Sabou to play with in the park. I am hoping that this is helpful to her and helps her to feel more comfortable trying to speak Bambara.

The women all tell me to encourage Youba to speak to Sabou only in Bambara. We’ve had this conversation many times, but he feels that adding another language on will only confuse Sabou. I speak in Bambara to her some times, but not enough, and I really don’t want her to learn my awful Americanized Bambara and accent, I want her to learn the real thing. Well, since I am the one who is determined to make it happen and not him, I’ll just have to keep pushing it myself.

I absolutely love these times in the park, chatting with the women in Bambara, laughing up a storm, it’s like my old Peace Corps days, except that I’m in the US, and I have a child. :) I am still determined to stay in this neighborhood. Where else could I find such easy access to the Bambara language?

5/12/12 – Sabou’s First Day at Mosque

Lupus Awareness Fact #12: Successful treatment of lupus often requires a combination of medications. A new treatment for lupus was approved recently, and nearly two-dozen clinical studies are underway to develop a full arsenal of treatments.

A friend who has become very interested in Islam, but who has never been to mosque, invited Sabou and me to come to a lecture on Qu’ran and Family at a mosque in NJ.

I haven’t been to a mosque in probably five years, and since half of Sabou’s family is Muslim, it seemed like a good idea to give her this experience, and we were off for a road trip to NJ; her husband drove. What a treat. It was wonderful to be on beautiful country roads in NJ enjoying the countryside.

Well, I have no idea why we thought bringing a 2-year-old and a 1-year-old to a five hour lecture was a good idea. I’m quite sure we only heard about 2% of the actual talk.

Our day was spent running around after the two girls who were getting into everything. Before having a child, it used to greatly upset me to see these rooms in mosques closed off, off to the side, or in the back, for the women, like it was some form of inequality, but you know what, now having the experience of bringing a child to a mosque, I was so grateful for that closed off room, off to the side, where the girls could run free and not bother the hundreds of other people in the big room. And we had a speaker piping into the room so we could hear the lecture, well kind of, because there was quite a din of kids that the presenter was competing with.

Having grown up going to Roman Catholic churches, I know all about crying rooms. Those small rooms off in the corner, in the back of the church, and that became my new context for the private room for women and children in mosques, you know, a big crying room. And I was grateful for it, more than you can imagine. I was feeling very weak at times and had trouble getting up and down to chase Sabou. My friend really stepped in and did some of the chasing for me.

Some of the most humorous moments were not at all funny in the moment. First, Sabou jumped into my lap while I was holding a cup of tea and the tea spilled all over me. Luckily it was no longer hot, I mean what Mom of a toddler really gets to drink her tea before it is cold? But now there I was covered in tea.

Then she kept yelling Potty! Potty! So off we were to the Hamam. Sabou just loves to flush toilets, more than anything, so when she was done, she went to flush the toilet. I made sure to show her where the flusher was and not those other buttons. You know, those buttons that squirt water up at you as another way to get clean? Well, did my girl listen? NO! She turned that knob to HIGH and since neither of us was sitting on the toilet at the time, that water just became a huge waterfall in our stall. OMG! I just kept screaming – OMG! Because of course, I am on the other side of the toilet where the button is NOT, and somehow I have to lean over to turn it off without getting wet. Without getting wet? HA, we are both already absolutely soaked!

Water was everywhere on the floor, on us, like everywhere. I can’t tell you how I felt. You probably know anyway, so we leave the Hamam, and of course, I’ve got a change of clothing for Sabou. Of course I do. I just never think to bring a change of clothing for me. So, she’s all dry and happy and in clean clothes, and running around again, and I’m walking around the mosque completely soaked. Yup, it was that kind of a day.

I couldn’t wait to leave, I assure you, and be in dry clothes in the comfort of my own home, but I must share with you the cutest thing ever. It was time for prayer, and so we all lined up. I really wasn’t in the mood, because you know, I’m wet, I’m tired, and I just want to go home, but no, it’s time to pray. Sabou joins me in the line of women and follows all the positions, doing whatever I do. She is loving it. Stand up, then lean over, then down, head on floor, then sit, then up, etc, and repeat. That was so cute I can’t even tell you. It made up for the fact that each position was a little difficult for me. Something like this. Stand up (OK). Lean over (vertigo). Head on floor (all pressure goes to head - headache). Sit (ouch-legs-can’t). Stupid Lupus.

Besides watching her family in Mali pray, this was her first time seeing anyone do the Salat. But, I don’t think we’ll be returning to mosque anytime soon, at least not until she learns not to touch the buttons on the toilet.

In other news, my friend has located some very inexpensive co-ops and condos in my neighborhood. I tell her about the park and all the ladies who speak Bambara, because she is married to someone from Mali as well, and wants her daughter to learn Bambara. She gets me very hopeful that we could find a co-op or condo in this neighborhood and have enough space and still have the beauty that I keep finding here. Inshallah on that.

5/13/12 – Angelina Ballerina and Ice Cream

Lupus Awareness Fact #13: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working.

Long before I knew that May 13th was Mother’s Day, I bought tickets to the musical production of Angelina Ballerina for myself and Sabou, my friend Avaloy and her daughter Aubrey. All I can say is that it was the absolute cutest Mother’s Day a girl could wish for. Sabou was sporting one of the many amazing dresses that she owns but never wears and we were off for our Upper East Side adventure.

Well, the theatre had no booster seats, and we were in the last row of seats in the front before the seats start going up. So, Sabou had to stand on my lap in order to see, which was fine except that her dress was so poofy, I then couldn’t see the show. It seems no matter what I did, my view was of her poofy dress. This just completely cracked me up and I started laughing, never a good idea, but it just struck me so funny.

After the play, the characters came in the audience for a dance party. OMG, you should have seen Sabou. She was right in there, with the rest of them shaking her stuff. Totally adorable.

Then it was off for ice cream. We found this place called Dylan’s Nut House or something, and it was just perfect, like walking into Willy Wonkas. We all got ice cream and hung out in the beautiful weather.

When we got home, Sabou and I just played together. We did puzzles, we told each other stories, we took turns massaging each other’s feet, that just made me laugh, I can’t tell you, and then she did my hair. I love when she does that. It was a perfectly girlie day. It was the perfect Mother’s Day for real.

Now, Youba had mentioned going out to dinner tonight, so I just gave Sabou snacks for the rest of the evening. He got home a bit late, had just eaten, and stated that we’d go somewhere to celebrate after graduation. I’m not holding my breath, but I immediately took off our nice clothing and made some leftovers for Sabou and me.

Can’t complain though, because Youba has decided to come with Sabou and me to Rochester for Memorial Day weekend! A family trip on Amtrak. I am so excited. This will make up for the lost Mother’s Day meal and more.


The on-line support groups at www.mdjunction.com have been so helpful to me. They provide on-line support groups that cover 700 different health challenges and allows for support and anonymity. Maybe it could be of help to PeaceOfMind readers as well.

Here’s a link to another definition of what living with lupus is like: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
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Last edited by Tyler Schuster.   Page last modified on May 17, 2012

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