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.

3/22/12 – Coup d’etat

When I got home from the documentary last night, looking all gorgeous in my Mary Kay make up, I was sure that Youba would notice and have some compliments for me, but no, nothing. It kind of surprised me, but then it didn’t because he’d been with Sabou all evening and was probably exhausted, and he was just heading out to work, so I let it go.

This morning, when he got home from work, he went right to the phone and called his brother. I was a little surprised because he usually calls everyone on the weekend, but then living so far away from family like he does, who would question an extra phone call. I can’t understand everything he says on the phone when he is talking really fast, but I did hear him ask multiple times about his other brother’s whereabouts. But, I was on my way to work, so I let it go, didn’t think anything of it, and left for day care and then work.

When I got to work, my phone rang. It was my sister. She was calling out of concern for Youba’s family because of a coup, a government takeover that had occurred in Bamako, the capital city that morning. I had no idea. I mean it, I had no idea.

But now it was all coming together for me, Youba’s nonreaction last night and his phone call to Bamako this morning. OMG. I had no idea. Now I’m sitting in this meeting, totally not present, thinking only about what MIGHT be happening in Bamako and if my family is safe.

I called Youba as soon as I hung up with my sister. He stated that the army had taken over the presidential palace, and the national TV, and came on air saying that there was no longer a constitution, that there was now a curfew and that they were now in control. He said that his family members are fine right now, but what about tomorrow and the next day?

OMG. Mali? They haven’t had a coup in 20 years. They have been a role model for democracy and stability in Africa. Here’s what I know.

The Tuaregs are a nomadic people who have been fighting for their land in the north of Mali for years. They have also never been armed enough to really get anywhere, until now. So, what changed? Many Tuaregs left Mali to go fight for Qaddafi in Libya, where they would get paid. Mali is a very financially poor country, so any chance to make money is welcome.

Well, Qaddafi is no longer. So, with that, many of the Malian soldiers returned to Mali fully trained and armed and ready to fight again for the land they feel they’ve lost. Tens of thousands of Malians have been forced to leave the country as refugees since these uprisings began in January.

Yes, I said in January, which is when Sabou was in Mali. But Sikasso is way in the south of Mali and the rebellion was happening way in the north at that time, so there was no concern.

So, the president sent the national troops to fight against the rebels in the north, but here’s the thing, for the first time, the Tuaregs were better armed than the national army, and this greatly upset the army. They feel that they were sent to fight a battle completely unprepared and ill-equipped.

After a mutiny took place on a base outside of Bamako, the soldiers decided to head right for the presidential palace and take that over, in order to get the support they needed to head off the raging rebellion taking place in the north.

Now, mind you, Mali is just one month away from an election. Well, was. Who knows what will happen now.

I made it through the day, but it was very hard to concentrate at work. I couldn’t wait to get home and find out from Youba what was going on, and to get on Facebook to connect with former Peace Corps friends with connections to Mali.

No further news from family members. I notice that Youba is closing himself off in his room and studying, even though it’s still Spring Break and his goal was not to. My first thought, this is his way of dealing with a situation that he has absolutely no control of.

Through Peace Corps buddies on Facebook, I learn of a blog being done by a fellow Peace Corps Volunteer who still lives in Bamako with his wife and children. Here is his blog for those who are interested in following the coup step by step:
http://bamakobruce.wordpress.com/

One thing the coup was good for was getting my mind off my dermatology appointment. After work I headed over to meet my new dermatologist. I gave him the results from my biopsy last May, which reads Actinic Keratosis. He wasn’t interested at all in that, since it was on my chest and my complaint today is this new spot on my back. Well, he took two seconds to look at my back and said, “What? This? I’m not worried about this. You’re fine.” I had him do a complete skin screening anyway, since it’s been almost a year. He took a bright light and shined it all over my body, and was done with the screening in about one minute flat. I was shocked. It was such a different experience from my last dermatologist, who had his staff look me over with a fine tooth comb and biopsy everything little thing they found. This one simply said, “You’re fine. You don’t need to come back for another year.” I said, “WHAT? The last dermatologist was doing biopsies every two weeks.” To that he replied, “Yes, but I do things the right way.” I am so relieved with this dermatologist. You see, my Rheumatologist never leads me astray.

3/23/12 – Learning Limitations

It was back to work today with no news from Bamako. I am not worried about the folks in the villages, or the family in Sikasso. I am only worried about family and friends in the capital city. Despite this, I call my close friend from my Peace Corps village, Baroueli to see how he is doing and his family, etc. He says, “There has been a coup. All is calm.” So simply put. One can only hope that what he says is true.

Today, my supervisor had planned a nice lunch with our team to thank us for all our hard work. It was also one of our team member’s last day on the job before her maternity leave.

Well, to get to the restaurant, there were three flights of stairs up to get to the subway, which means three flights of stairs down to get out of the subway. Then, the restaurant was not near the train, and it was time to walk. My legs were so weak, and the lower back sciatica pain was showing up, and I really didn’t know how I was going to make it. They were so patient, understanding, letting me take my time, and take my time I did. Not that I had a choice.

But, I will tell you, there are no regrets. It was a fabulous fun lunch with no talk about work, only laughing and stories and fun. I would do it again, just not very often, because after lunch, it was back for the walk to the subway, up the three flights of stairs to the subway, down the three flights of stairs to leave the subway and then the walk back to work. I thought I would totally just pass out. So discouraging, but such is life with Lupus.

For the rest of the afternoon, I was pretty much useless. The legs were so weak, the back in such pain, my energy so low. I just stayed at my computer as much as possible working on spread sheets. I even called Youba just to let him know that I am not feeling very well and will need his help with Sabou if he’s around.

It took me so long to walk up the hill from the train that he did go and pick her up and then took her out for a walk. I got home and just crashed on the bed. Didn’t move for a long while, and just rested; rested from the day of total over exertion. How embarrassing to say that knowing how little I did, and how my coworkers walk up 21 flights of stairs during their lunch break just for the exercise. Yes, Lupus has a way of making me feel completely pathetic if I let it.

After a long rest, I did start to feel like myself again, and I got motivated to pack the little girl’s sleepover bag, and do the dishes. See tomorrow is a BIG day.

Sabou is headed to Dogomani’s for the weekend to play with Papa and Fatime because we are getting a new kitchen floor on Saturday and a new housekeeper is starting on Sunday. Very exciting, big weekend for all of us.

3/24/12 – Floor!

Sabou and I wake up early and start getting her ready for her big day. Her bag is packed. She’s got her own little backpack full of fun stuff as well and after breakfast, we head out to the bus. Getting her up and dressed this morning was very easy. All I had to say was Dogomani! And Bus! And that girl got moving. She was awesome walking to the bus and even took my hand instead of the other way around.

We went to the apartment, and she was so happy to see them all. I stayed with her until she settled in, but not for long, because the super was scheduled to arrive around 9:30. It’s not a far walk, so I decide to walk home slowly. The legs are still better, but the sciatica pain keeps showing up.

Now it is 9:30; nothing. 10:00 and nothing. 10:30 and no super and I am getting nervous. See, he has to do this today. This is the only day I have without Sabou.

I go to his apartment. His son answers the door to let me know that he’s sleeping. I’m like, well he said he’d do my floor at 9:30. He needs to do my floor today. The son goes back inside and comes back out to tell me again that he’s sleeping and that his door is locked. I repeat myself, that this is the only day that I have available for him to do my floor, he said he was going to do it today. He goes back inside. A few minutes later, the super is at the door telling me that he was sleeping. Yeah, I got that message. I reminded him that I need him to do the floor today because this is the one day that I will be around and Sabou will not. He said he’ll be there shortly.

11:30 and he finally arrives, which is precisely around the time that Youba wakes up and of course decides to use the kitchen, turn the stove on, etc. I’ve given up. This may or may not happen today. See, the super now can’t move the stove because it’s hot and he’ll get burned. So he leaves. Yes, he leaves, for like an hour I think.

Around 12:00, the phone rings. It’s Dogomani. Totally unexpected. I’m like, uh oh. Well, Sabou is crying and wants to call Mommy. She wouldn’t take the phone, but they made sure she knew that Mommy was on the phone, and I said all kinds of nice things into the phone, hoping that she could hear them. Hopefully this will be the only call of the day and Sabou will settle in to her sleepover just fine. Fingers are totally crossed.

At this point, I am getting really nervous because now there’s the possibility that Sabou may need to come home, and the Super has yet to even begin the job. What did I get myself into? Is this really going to happen today or not?

Now it is 12:30 and the Super returns stating that he just went to eat a hamburger. The stove has cooled down. And he can finally start.

That’s around the time that Youba left for school. I reminded him before he left that depending on when he got home or how he was feeling, we may be able to do something fun, just the two of us, since Sabou is not around, you know like dinner or a movie. No reaction. I am getting a lot of silence from him lately.

Super worked until about 5:30 and then left again. The glue needed to settle in to the floor. He showed up again about 6:30. I know nothing of flooring, obviously, because for such a tiny kitchen, it never occurred to me that this project would take this long.

Youba got home about 7:30, and the Super was still working, complaining about his back the whole time. I can’t imagine taking a job as a Super with a bad back, it’s a really physical job.

Around 8:00, the work was done. It’s at this point that I remember all the things I was hoping to do today, thinking I’d have a lot more time, thinking that the kitchen would be done much earlier. This means, no dinner, no movie. We have to at least get to Target to buy cleaning supplies for the new housekeeper coming tomorrow.

Youba is willing to come, and man was he fun on the trip. Silent, distant, no opinions about anything, hard to engage. So, I just got what I needed and stopped asking.

Our one time alone, without Sabou and it was a little off, a little awkward. And I know he’s going through whatever it is he’s going through. I tried to get him to talk a little when we were home, but not happening. Just not forthcoming.

But then he called his cousin, and man did he have A LOT to say, about Malian politics, what’s going on, discussing, debating next steps. It was so good to see him a little animated again. So, at least I know he’s talking to somebody. It’s just not me right now.

By the way, the floor looks great. Huge difference. Next I want to get rid of the old broken table we’re using for the convection oven. Tough sell. Youba will not let it go. I have no idea why. His only response, “if you get another one, it’s going to end up looking like that anyway.” Yeah, I didn’t even try to respond. Will just take care of this on my own, but I find that I keep asking myself, why doesn’t he want new nice things in his apartment? Why is he so tied to his old broken worn out stuff? When the meticulous way that he is taking care of our house in Mali, with all brand new furniture and stuff is so different? Why does he settle for less in the home that he lives in 11 of 12 months a year? I don’t get it. But I will keep working on it, especially since this is my home too, and from the looks of it, with my health and this new political unrest in Mali, I may not be going back to that beautiful house for a long time.

Mali remains under curfew; people are asked not to leave their homes.

3/25/12 – Housekeeper Horror and Horror on Highway

So, the housekeeper was scheduled for 10am. No housekeeper. 11am, no housekeeper. This time I just let it go. I got my floor and I’m satisfied, and I realize that I am my own housekeeper. I accept it, and break out all those cleaning supplies that we bought last night and I start scrubbing that stove. My goal for today quickly became just clean that stove. Well scrub and scrub I did, and I’m telling you, there is some stuff on that stove that is never coming off. I mean, I tried, I recruited Youba and he tried. So discouraging, but we just gave up. Then I moved onto sweeping the floor, cleaning the livingroom, and Sabou’s room. Wow, my fingers were feeling it the most from all the scrubbing.

Dogomani called around noon. I told her that her friend did not show up, but not to contact her, just to let it go. I told her that she could bring Sabou home at any time since the housekeeper is not coming.

Youba told me that he is planning to start cleaning the apartment again once he graduates, which is May/June, and look it’s April. We can keep this going until then. And I feel like this is a much bigger accomplishment than finding a housekeeper. I found my partner, my spouse again. And we are a team again. It just feels good.

Sabou came home at one, I got her some lunch, and we prepared for our big trip to the St. Patricks Day party out on Long Island.

Sabou’s friend Laya and her mom showed up around three and we headed right out to the party, with me driving and the two girls next to each other in car seats in the back seat. So cute.

Sabou lost it. She wasn’t getting her way and she lost it. She squirmed her way out of the car seat on Route 95! Absolutely terrifying. See, this is yet another reason why I don’t go anywhere alone. There are two many variables right now between me and Sabou.

My friend dealt with it and got her strapped back in to the carseat, and I got off the highway as soon as possible, at the next exit.

Sabou and I went for a long walk. I called my friend to let her know that we were running late and why. She completely understood. Gave Sabou some edamames, which are almost her most favorite thing in the world, she calmed down and we headed off again.

The party was fantastic, seeing Sabou interact with all different kids, all ages. She really is quite the social butterfly. The coolest thing I learned today is that Sabou knows how to and can dribble a soccer ball very well. She had complete control of that ball and dribbled it across the back yard. It was absolutely adorable and I had no idea that she had this talent. And no matter what I’ve said on the topic before, and how I’m not ready for those classes and that kind of a schedule, you know what, it just may be time. Time for her to go to a structured class where she can build on these skills she is already developing on her own. I’ll look into it tomorrow.

As for Mali, there is a period of calm, and more information about the head of the Coup. He was trained at US military bases between 2004 and 2010. He is not backing down and asking people to stop looting, especially in their military uniforms. The US is threatening to shut off 70 million dollars to Mali.

3/26/12 – Pushing Limits, and Becoming a Soccer Mom

Today was a big day. I had a meeting in Staten Island and was determined to drive myself to it. Partially to prove to myself that I can, because if I can get to Staten Island, that means that I can get to Jersey City. A place I haven’t been able to get to since diagnosis, without help.

Well, you know what, I did it. And it was easy. I went through NJ, the roads I know so well, in case there was any trouble on the highway, I would at least know where I was. And yes, I did it. Then after the meeting, I drove two co-workers back to work in Queens, and after work I drove home to the Bronx! I did it. No idea what the impact will be tomorrow, but for today I can say I did it.

When I got home I started the all important work of finding a toddler soccer class somewhere in NYC. Thank goodness for NYC I have to say because there are such classes all over the place, just not near where I live nor near a subway. But, I did find a class on Sundays, in Central Park, not too far from a subway stop. And, click, just like that, the girl is starting soccer in April. We’ll see if it’s a total mistake or not. But we’ll never know if we don’t try.

Another thing to share is that maybe it was because I was just so proud of myself tonight, so I was feeling a little positive in general, but Sabou and I got along famously. No hitting, no screaming, just a lot of fun times playing together. It was a great day.

On top of that, I have this amazing weekend to look forward to. My parents are coming to take me to Rhode Island. I’m even taking a day off work so it will be a three day weekend. I look forward to rest, relaxation, and beautiful ocean views and walks on the beach, in my SPF gear, of course. Looking forward to something really changes one’s perspective, I have to say.

Ironically enough, today is the Journee des Martyrs in Mali. It turns out that 20 years ago, during the last coup, the president who was just ousted by the putschists, had been put into power by a coup in 1991. So, it was a holiday in Mali. The US Embassy also declared that it is safe to leave one’s home now and offices are set to be open for business on Tuesday. Things are calm. Is Mali returning to normal?

3/27/12 – Puzzles – Do I have Lupus or Does Lupus have Me?

I had lunch with a former co-worker today. She was asking me how I am doing and I, as always, gave her updates on my Lupus as part of it all. She has read the Spoon Theory, and said that she never thought Lupus was a big deal until I gave that to her to read, because one of her childhood friends has Lupus, has had it since childhood, and never mentions it to her, so she just figured Lupus wasn’t a big deal.

The conversation made me wonder if I make too much about Lupus. (My husband will tell you yes.) Is it because I am 43 and I was just diagnosed, whereas this girl has had it her whole life and it has been integrated into her life for so long? And someday I’ll get there too, it will just take time?

It made me wonder if I am just a wimp about the whole thing, but somehow I don’t think I am, and I do feel this need to educate people about Lupus when I have their attention, mostly because I had never heard of it before the day I got diagnosed. I don’t know.

I wonder if over time my answer to “How are you?” or “How are you feeling?” will transform to something not Lupus related. My canned response for the moment is, “Depends on the day”…followed by how I am doing that day, or “Every day is different.”

I’ve met people who state that they are not defined by Lupus. I wonder if I am. Lupus has limited me in so many ways and maybe I just need to stop focusing on that. Be grateful for the life I had and for the life I have. And maybe it’s me limiting myself and not Lupus. Just random thoughts I’m trying to figure out.

I am happy to report that Sabou can now solve puzzles. She has figured out how to put together the four 25-piece floor puzzles that she’s had for over a year now. It is so cute to watch her on the floor. She is all into it, concentrating really hard, matching the colors and the pieces, and of course when she’s done, “I did it!!”

Mali was open for business today. People were able to return to work. There is also talk of Malians backing the coup because of discontent with the now former President. Still no idea what the future holds.

3/28/12 – Church in a Crypt

For the past few days, I’ve been receiving messages from my pharmacy telling me that my prescription is ready to be picked up. But they never tell me which pharmacy. See, I have prescriptions filled at CVSs all over this city based on where I am when I need to pick them up. Well, I finally called and found out where the medication, so after work it was off to the pharmacy with Sabou in tow.

This pharmacy is one subway ride and a bit of a walk. Now, I’ve given up on the stroller because it just becomes of fight of wills. She wants to push it and carry it up stairs, and it’s just become dangerous, so we brave the subway alone, with no stroller. She was pretty good on the first subway ride. Coloring, using another seat as her table. And then we walked down the crowded NYC sidewalks in a busy part of town. Sabou is distracted by everything, and stopping to look, to count things, and she does not walk in a straight line. But you know, I just looked at her amazement, navigating these urban streets full of people, with her little backpack on, and I thought how amazing it can be to live in NYC for her.

We make it down the first block and are turning the corner. There is a HUGE church on the corner, and the door is open to the basement. Sabou loves stairs. She loves stairs, and wants to go inside. I notice a small sign on the door “Mass at 6:30 in the Crypt”. Sounds cryptic to me, but since it’s open I allow Sabou to lead the way. Inside there is a big open room with two men sitting down talking. Off to the left I find it, the Crypt. A tiny room, dark and very decorated with statues, candles and rows of chairs. We walk in and take two seats in the back row. There are about five other people in there. A radio is playing what sounds like religious music and Latin prayers. Sabou looks at me, puts her finger to her mouth and says, “Mama, sssshhhh.” It was so cute. And she sat down. Now she notices the many candles up on the altar. She immediately starts trying to blow them out from her place in the back row. Just adorable. Now people are looking at her and smiling, a few chuckles. She turns to them, “Ssssshhhh.” OMG, I am loving this and just interested to see what happens next.

There is a row of lights, red yellow and white, like the strip of emergency lights that line airplanes next to us on the floor. She is fascinated. “Mama, lights” and again she tries to blow them out. When she’s done, another, “Sssshhhh.”

Now, she’s settling in, taking off her backpack and sitting down. It doesn’t last long and she wants the backpack back. I put it on. I ask her “do you want to stay?” “No, Mama, bye bye.” And just as quickly as we went in, she was ready to go. It was absolutely precious.

Now we’re off to the pharmacy, where luckily they have shopping carts. A relief. She is happy to be pushed around in the cart. While we wait we get some things she loves, cereal and cookies. To keep her occupied we chomp on the cookies while we wait. All is going well. But it can never last too long, and she had had enough and was through being in the cart. Luckily the medicine arrived just when she was about to lose it, and we got out of that store as quickly as possible. Another meandering walk to the subway, and then home, back to her puzzles.

I notice that I am not having the difficulty walking lately, which has been wonderful, and even stairs are OK when the legs are working. Never know how long that will last, but grateful each day it happens.

Demonstrations are held in Mali. The protesters take over the airport and the tarmac to make sure that the plane transporting leaders from the West African community cannot land. This does not look good for Mali. One country, Cote d’Ivoire, has already closed its borders with Mali and not allowing trade. Many needed supplies that Mali depends on imports for will no longer be available.

3/29/12 – Parents Arrive

Yes, finally, the time has come. My parents are here to kidnap me for the weekend to Rhode Island. I even took Friday off from work. They are also here to help me get my car inspected. I have no idea if this is a Lupus thing or not. I mean I’ve owned cars since 1991, and have never had any problems keeping up with oil changes, inspections, registrations, etc. Well, I’ve been in Bronx now for almost three years. Yes, it’s time for inspection and it’s like I can’t wrap my head around it. I get stressed out, where to go? Who’s a good mechanic? Who can I trust? I don’t know any mechanics in my neighborhood. The parking and driving around the city is just stressful anyway, so I do the only thing I seem to ever be able to do lately, ask my brother. What would I do without him? Please never ask that question. I have no idea.

So, he’s got this mechanic near his home in the suburbs, the suburbs that are not that far away, that I am able to drive to. So, between he and my Dad, they have it all planned out in a way that I just never could.

My parents arrive today. Tomorrow morning, we take two cars to the mechanic. I’ll drive mine. Drop off the car, and continue our ride to Rhode Island. It’s so simple, so easy, and yet totally beyond me. All my beliefs about my independence that I’ve held for so long are gone. Totally gone. I can’t parent alone, handle these things on my own. It’s like things, just simple things can stress me out. No idea why, may not be Lupus related. Both my father and my brother blame it on moving to NYC. I do love having NYC to blame. It’s such an EASY target.

I couldn’t wait for work to be over. I was so distracted by my parents’ arrival. They came without a hitch. We got their car to the parking, picked up some fried chicken that is available in my neighborhood and had a wonderful evening. They LOVED the story about Sabou wanting to go to church.

3/30/12 – and we’re off

So, nothing is ever completely easy, is it? We are all set to leave in the morning, on time and on schedule. We get to the parking lot and it’s time to get the car seat out of my car and into their car. Guess who can’t do it? I just can’t get it released. I am getting so frustrated with the car seat, but you know what, I’m not alone. I told you, I can’t do anything alone. My Dad gets in there, and he’s able to get the thing out and then has no problem attaching it to his car. I’m telling you, support is everything.

So, my girl has her first ride in Nana’s car, ever, and without Mommy. I’ve got my car all to myself, and we head out the highway. I get to the gas station much after they do, because I took the lower level on the bridge, which of course, was under construction and down to one lane. Always something. When I finally arrive, I get out of my car, and do my usual limping thing. My legs are never right after I drive, and my Dad saw it for the first time. I think it made him sad. He limps too, like all the time, but he can still drive for long distances. Some people are just stronger than others, I guess.

He says, you are not driving. My Mom’s with Sabou in the back seat and I am relaxing in the front seat. Sabou is having a fabulous time with her grandparents. And we are on our way.

That evening in Rhode Island, at 7:30pm, my girl says “Sabou, nite nite” and went to bed. Now Nana and Pops have a twin bed, so it’s like a big girl bed, and she crawled right into it and went to bed. I was shocked, amazed and so proud. And both my Mom and I realized that there had been no tantrums today of any kind; just a happy girl who obviously LOVES Nana and Pops house.

One country, Cote d’Ivoire, has already closed its borders with Mali and not allowing trade. Many needed supplies that Mali depends on imports for will no longer be available. There is talk that Burkina Faso will follow suit.

3/31/12 – Where is my daughter?

Today was another amazing day with no tantrums. Sabou has been happy, talking a lot. My parents are very impressed with her speaking abilities. She is communicative, making jokes, playing nicely and laughing a lot. My Dad keeps saying, “I don’t know you keep complaining about.” My Mom keeps saying, “She’s just a happy kid. You are so blessed.” I need to remember this. I also think we may be over the terrible twos? I mean she started them at like 18 months, so we may as well finish early. She has been so fun, so funny, such a joy to be around. If this is the wave of the future, I am totally in.

We had a relaxing day, took Sabou for a walk around the neighborhood, went shopping, and dared to try to see a movie. Yes, it rained all day. So, we went to The Lorax. I had no idea what to expect from her, and just bought her a big thing of popcorn, like her favorite thing in the world, and she was happy as a clam. She sat and watched that movie with no problem. I was so proud, and so looking forward to doing these type things with her again. My little girl is growing up.

The other thing I noticed about her today is that she is showing fear, for her first time ever. She was afraid of cars on the road on our walk, and my parents live in a small beach community where there are barely any neighbors around until Memorial Day, so literally only one car went by us on our walk. I can only hope that this fear will translate well when she gets home. She doesn’t seem to have any fear of the cars on our busy Bronx streets. She was also freaked out by some plants on my parents’ stairs. No idea why. She also is starting to show fear of bugs. Is that just a girl thing?

I would love to know more about this. If this is some kind of milestone in child development or is it something I need to be watching closely.

I received no updates on Mali today. I’m lucky and privileged to have a day off from thinking about it. The folks in Mali are not. They are living whatever they are living on a daily basis with no relief.

4/1/12 – Out of Commission

And just like that, our weekend is over. I wake up feeling horrible. No energy, achy all over, pain, just pain. I am just sprawled out on the couch and it’s time to go to church. Yes, we are going to try to take her to church again. The only thing that I can envision is a complete nightmare, like the last time my Mom was in town. But, we were off.

I could barely stand, and just held on for dear life. Of course, it’s Palm Sunday and there’s that REALLY long gospel reading you need to stand for. Man, that was hard. When I would sit down, Sabou would tell me to get up. That was adorable.

Sabou was amazing through the whole service. She sat when people sat. She stood when people stood. She knelt when people knelt. She put her hands in front of her in prayer position when the priest did. She opened her arms out wide when the priest did. There were no antics, no tantrums, no trying to run away down the pew. She was completely happy and behaved the whole time. I am so proud of her.

I also saw the judge who married Youba and I last year and gave him a big hug. It was so nice to see him. I told him what an amazing day that was, now almost two years ago. Still one of the best days of my life.

We got home, packed the car, and headed back to NY. Again, I was in the front seat, and no matter what I did, my whole body just ached from head to toe. There was no comfort. I hate days like this. We did a little shopping, and my parents kept asking me are you OK to do one more store? And since I was the one who wanted to go shopping, of course I did. But each store was hard. One I just sat down in the front waiting for them to be done. And we were back on the road. No rush today. We’ve got all day. We were trying to figure out a place to stop and eat, when in all amazingness, Sabou fell asleep. Well, that changed everything. We were all so happy, and we just kept driving until she woke, which wasn’t until we were in NY.

An early dinner at Red Lobster followed by a ‘surprise’ birthday song for my Dad. His birthday is Thursday. After they finished singing, he proclaimed, “April Fools!” but not everyone appreciates my Dad’s humor, and really the staff were not pleased at all. Live and learn.

In the evening, once home, I learn that the rebels have taken hold of three regions in Mali now: Timbuktu, Gao and Kidal. These are all northern territories, far from Bamako and far from Sikasso. They have now broken into different factions with different goals. There are the Tuaregs who just want their land back and to have their own nation. There are the Islamists, who want to join with their Maghreb neighbors to the North, all of North Africa. The media is also mentioning links to Al Qaeda.

The rebels were able to take control in the north so easily because the national army, that mutinied because of their lack of preparedness to fight against the rebels who have better, stronger, Libyan arms, are still trying to figure out what to do and how to run the country in Bamako. So, there are like three different armies in control of Mali right now.

The Economic Community of West African States (ECOWAS) who was denied entry because of the protesters, gave the coup leaders 72 hours to restore the former constitution. They did not comply, and now the entire group of nations has imposed economic sanctions on Mali. There will be no access to the West African Bank, so money will not flow to Mali. The borders are closed, so no access to needed supplies, like food, gas, oil, and the like. The neighboring countries to the north (Algeria and Mauritania) are following suit, so now Mali is completely closed off to trade. Soon there will be no electricity, no gas, and no food.

200,000 Malians have fled their homes in the north. The rebels have looted the UN World Food Programme’s warehouses, and the UN has promptly closed their program in Mali. Literally, there will be limited access to food.

There is an emergency UN Security Council meeting scheduled for tomorrow to see if the international community will be supporting ECOWAS efforts and imposing their own economic sanctions. I fear for Mali. I fear for my family. I fear for my friends.

I check the Peace Corps website, and there is no update on Mali since March 22, 2012, the day the coup happened. I feel for the parents of the volunteers.


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 April 10, 2012

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