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.

4/2/12 – Al Quaeda gaining presence in the North

The UN Security Council met and is very concerned about the growing Al Quaeda presence in the north of Mali. There are now three groups vying for power with three very different goals. And they keep gaining strength and taking over more cities. Almost half the country, the regions in the north are now under rebel rule.

There will be international community support of the West African economic sanctions, which, while not surprising, does not bode well for the citizens there.

As for Sabou, she got to play with Nana and Pops all day. They are staying with us until tomorrow. It was hard to concentrate at work. I just wanted to go home and be with my family.

As for Lupus, today I begin my next taper off Prednisone. I’m down to 2mg daily now. And we’ll see how it goes.

4/3/12 – Peace Corps closes in Mali

It’s a very sad day and I just keep crying. Even during the last coup of 1991, which put the now former president into power, Peace Corps remained in the country, feeling that it was safe enough to stay.

Not this time. With borders closed, the violence in the north, soon to be lack of supplies, food, gas, oil, etc., the entire country will soon be shut down. All volunteers and staff are being evacuated and the program is shutting down.

I consider Peace Corps as the last hope. If Peace Corps stays then I know there is still some semblance of hope. But not this time. Peace Corps is leaving. The US Embassy has “authorized departure” of US citizens.

I can’t help but think of Rwanda in 1994 when all the ex-pats and foreigners were evacuated to safety, leaving the Rwandans to face the atrocities on their own. Feeling helpless and worried. I have been crying a lot today. If people looked at me at work, and mentioned something about Mali, I would just well up again.

Youba spoke to his family in both Bamako and Sikasso today, and for the moment all is well. We just don’t know for the next few days, for the future. I hold them all close to my heart, and have never felt the absolute blessing that Sabou is for his family until this moment.

My parents were gone by the time I got home. I miss them already. It’s always so helpful to have other people around, just to share the load and know that I’m not alone.

4/4/12 – Sharia Law in the North

It’s done. There is now Sharia Law in the north of Mali. The mass rapes and pillaging have begun. The Islamists have spread their control down towards Mopti. As Youba put it, “If they can get there, they can get to Bamako. If they can get to Bamako, they can get to Sikasso.”

I am reflecting on my career, where life has led me. And since returning from Peace Corps Mali in 1998, my entire social work career has been in the field of refugee resettlement (until recently), offering support and advocacy to refugees, survivors of torture, asylum seekers, immigrant detainees, victims of human trafficking, etc. Never in my mind did I ever expect that it would be my own family members who would be in this situation. I keep trying to figure out how to get them, at least some of them, here to the US.

I called my Peace Corps village again and got the same response. All is fine and well and calm. The fact that the cell phone is still working I took as a good sign for the time being. I just don’t know how long any of this will last and when will the supplies literally, as Mali enters their hottest season of the year, dry up.

Yes, it’s hard to concentrate at work. It’s hard to keep a focus on much now. I just keep looking into my beautiful daughter’s face, so happy that she had this last trip to Mali with her Daddy, building special happy memories. So happy that she is here for Youba no matter what happens back home.

These are crazy times and we need to just keep going.

4/5/12 – Cease Fire?
They’ve begun rationing electricity and water in Bamako, and although for the moment life is continuing as ‘normal’ with markets and businesses open, the thought in the back of my mind is OK for now, but for how long?

In the north, the Tuaregs have instituted a cease fire. Why am I so skeptical?

4/6/12 – Rebels proclaim Independence in the North

Today I am determined to stay focused on the present, on my life here in the States, and not to continue to be so distracted by things out of my control so far away. Yes, I was determined.

I enter the subway to go to work this morning, and there, sitting next to me are two Malian women discussing the situation in Bambara. I can’t help it. I sit next to them and listen. I join in the conversation, and once they got over the shock of this white lady speaking to them about their country in their language, we just commiserated together. I told them how I cry every day for Mali, for my family, my friends, and the country as I knew it. They say what any Malian would say at this point “I ka na kashi” “Don’t cry.” And they remind me how none of it is in our control. And we go back to the political discussion. I give benedictions to them as I leave the train and head to work.

Today the Tuaregs proclaimed their independence from Mali. They call their land in the North “Azawad”. They requested that the West African and international community respect and recognize their secession from Mali and their sovereign territory.

No one is on board. The Economic Community of West African States (ECOWAS) has prepared 3,000 troops to bear down in the North if they do not step down. The international community and France (the ‘former’ colonial power in particular) in no way recognizes this secession and will not give up the original political boundaries that were created for Mali.

There was no entry from my Peace Corps blogger friend Bruce Whitehouse today (www.bamakobruce.wordpress.com), which made me think only three things. 1 – There is no electricity. 2 – He left. 3 – He’s in trouble.

4/7/12 – A Return to the Better?

Yay, there’s a posting from Bruce. I’m surprised how dependent I am on his information. It’s so much better than the bits and pieces in our media.

Today it was announced that Mali will return to the former constitution and will allow the National Assembly Speaker (like our Speaker of the House) to take the Presidency. He, of course, is out of the country, and is set to resume power upon his return. He is being given 40 days to organize and plan the presidential election, which is highly unlikely.

See, with the Tuaregs proclaiming their victory and their independence, completely satisfied with the amount of land they have taken over, the country is not unified. There are still the Islamists who are not satisfied with the amount of land, and won’t be satisfied until all of Mali is under Sharia law. Even though the Tuaregs have no interest in Bamako, the infiltrated Al Quaeda members of their army are. These make for very complicated times to schedule an election. It sounds to me like he is being set up to fail.

And remember, the only reason the national army gave for starting the coup was their lack of preparedness to fight against the rebellion in the north. Yet, since they conducted the mutiny/coup, and have left their posts in the north, the rebels have had free range to conquer much of the country. That also doesn’t bode well for an interim leader.

Well, stateside, it’s Easter weekend, and we have a lot of activities planned. Today an old friend is coming by and we plan on exploring this old mansion right next door to me that I have been wanting to visit since I moved to Bronx almost three years ago. It’s been vacant, closed, locked up. And while I notice movement there every so often, and have Googled for information about the mansion every way I know how, nothing. I came up with nothing.

Well, in searching for cute NYC kid activities for Easter, it was listed. There will be an Easter egg hunt on the lawn and then art exhibits inside, and a chance to view the renovations being done by www.nolongerempty.org Oh my goodness. I am so excited. Now, of course, I didn’t register early enough for the Easter egg hunt, but that’s not really my goal anyway, and what Sabou doesn’t know, won’t hurt her. Luckily she doesn’t understand yet. I want to get inside that amazing building and see what’s what.

We get there, and right out front is this big blue RV decorated with all kinds of stuff, and it’s called “The Bronx Children’s Museum.” WHAT? I had no idea we had a children’s museum in the Bronx. I had to talk to the folks. It turns out that we don’t. Not yet. The van is a mobile unit that for now is used to visit Bronx public schools. But, and this is a big but, the Bronx Children’s Museum is set to open right across the street from our new mall down by Yankee Stadium in 2014! Why that doesn’t feel so far away, I have no idea. My immediate reaction was, well, then, maybe, just maybe, I’ll stay. My friend thinks I’m crazy and wants me out of my neighborhood as soon as possible.

Then we pass by the long line of kids waiting to join the egg hunt and head inside the building. It was fascinating. One room was dedicated to the history of the building, and the other room was dedicated to the current situation in the Bronx. I was amazed at how much I could relate to the current situation room. Yes, somehow, am I becoming a New Yorker? Am I?

Then we kept going and learned about the building. Fascinating. When the European immigrants were landing in America, having left everything, including their wealth and prestige behind, the so called ‘formerly rich’ did not want to end up in tenements, so this building was built. Basically, it was a boarding house, a rooming house for the formerly rich so they could continue to live as they once did, and since there were so many people living there, it kept the costs per family down. Fascinating. They’ve transformed the second floor into an art gallery and local artists have decorated each room in their own unique style. Unfortunately, that was closed because of the large number of children roaming around, but I am determined to come back again soon, knowing me, probably tomorrow.

We also learned that they have turned one whole area of the mansion into a bed and breakfast. That also was closed off to the public today, but everything will be open tomorrow. They have also recreated the community activity groups that were once active all those years ago, and suddenly I see a way to finally feel a member of my community, active and participating, as I have always done that is until I moved here.

People have been telling me that the goal is to gentrify this section of the Bronx. I keep hearing it, but have seen no evidence of anything changing. Maybe this is the first wave?

Then it’s off to Westchester, the suburbs, to visit with a friend of ours who has very recently moved back to NY from Texas. She has a five year old daughter who Sabou has never met. This is bound to be an adventure.

We get there, and the house is huge, it’s gorgeous, and it has both a front and a back yard. It takes a while for the girls to connect. Her daughter learned that two-year olds can be kind of annoying. Sabou learned that all the fun stuff in the play room was not hers.

It was really over the egg decorating that they finally connected. My friend’s daughter was shocked to learn that Sabou has never decorated eggs before. “WHY?” she asked. I explained that last year Sabou was only one and was too little. That seemed to be the moment she finally got it, that Sabou is just a little girl compared with her. They had a GREAT time decorating the eggs with the good old PAAS that I remember from childhood. And after eggs and a great meal of pizza, they were happy as clams together and even went off to play by themselves. So, we as adults and old friends, had time to just reconnect and enjoy each other. I loved it. I loved the whole day.

Sabou had the chance to go the front door, and say, “Bye Bye Mama” and I said “Go out and play” something I have been wanting to be able to say to her for SO long. I finally got to say it. She smiled, and waved at me and said again, “Bye Bye Mama” and off the girls went to blow bubbles together in the backyard. What joy. What joy for me as a Mom to give her this opportunity finally.

At one point, she picked up a toy electric guitar (battery run) and started wailing on it like a rock star. My immediate reaction was, yes, that’s definitely from my side of the family. Most of my brothers are musicians and into alternative music. My second reaction was, oh yeah, we watch Fresh Beat Band all the time and they are always giving concerts. So, who knows. Probably a little of both.

It was a great day. I did have moments of fatigue and aching, but not bad, and was able to drive both ways. The trip was about an hour each way.

Sabou went right to sleep and I had more time to hang out with my friend before she left. As the Fresh Beats say, “It was a great day!”

4/8/12 – Is no news good news?

It’s Easter. I was thinking to bring Sabou to church, back to that Crypt she seemed to like so much, since she was so good in church last week, but she was so into her puzzles, and Daddy was home with us, that it didn’t seem the thing to do. One of the best things we did do today was to sit down, the three of us, at the table, and eat lunch together. This never happens. The three of us are never usually home at the same time, and even if we are, we rarely eat together because of all our different schedules. Something happens when you eat together. I just felt so complete as a family. It was incredibly cute.

This year, there is no basket for Sabou. The first year she doesn’t have one. Since she is with me all the time, it’s hard to get to a store without her, and so, sorry to say, not this year. What I was able to do was to get some plastic eggs and fill them with jelly beans and chocolates. You see, I called Dogomani. I don’t think we’ve seen each other nor gotten together since the coup, and nothing makes me feel happier than when she and her kids are bringing joy and laughter into my home.

She’s coming this afternoon. I plan on feeding them, bringing the kids to the mansion to explore it further, and then head down to a carnival that just showed up down the street, with amusement rides and everything.

She came about 2:30, just when Youba was leaving for school, and we were off. The kids explored the mansion, the art exhibits. We got to see the second floor, and were given a tour of the bed and breakfast. They will also be holding some performances at this site. AND they told me that there is a day care in the building! OMG – can you imagine that Sabou goes to an actual day care that is not in the living room of a small apartment, but in a mansion?

I gave the people involved my email address and will try to find the day care on the web as well. I am feeling so much hope for my neighborhood now, and feeling the desire to stay.

Then it was off to the carnival. The line was so long, and Sabou was not interested in standing. So I’m holding her in my arms, for a long time. This is not a good thing. I can feel my arms getting tired, pain rolling in, and fatigue setting in, and we are not even inside the carnival yet. She refuses to let Fatime carry her, but is willing to stay with Dogomani. What would I do without Dogomani? I have no idea.

Once inside, the kids check out the rides and choose which ones they want to go on. They decide on a small dinosaur ride that Sabou can go on too, and one big ride, that Sabou cannot go on. I treat them all to the ride tickets and off we go. Sabou had so much fun. They all shared a dinosaur car with Papa in front and Fatime next to Sabou in the back. Then we went to stand on another long line for the big ride. Again, more time standing and holding and carrying Sabou. I know that I am wearing out and fast.

Once the kids are on the big ride, I bring Sabou back over to the kiddie rides for one more ride before we leave. There are trucks. She loves trucks. It seems that everybody does because the line is so long. We wait and wait. Dogomani and her kids return from their ride, and Sabou and I are still on line. She is squirming like crazy, unwilling to stand up on her own, and my body has had it. I say to Dogomani, let’s just go. I’m tired. She’s shocked, and she’s like just put her on the dinosaur ride again. Give her one more ride. Do it for her. It was that last sentence that got me. It brought me right back to when I was in labor and in so much pain, and Youba would just hold me and say, “She wants to come now.” Just that simple sentence, and Dogomani’s “Do it for her” were enough to get me out of myself, my pain, and thinking of someone else, my little girl. And I knew that Dogomani was right. We go back to the dinosaur ride, there was no line, and Sabou went on again. This time she’s on her own because there are only enough tickets left for one ride. I strap her in and hope for the best. She’s got the whole car to herself. And then, three really big kids show up and their mother plops them into the car next to and behind Sabou. She is checking out these boys like crazy. Who are they? Will she be OK? She keeps looking at me for a sign. I just smile and give her the thumbs up, and she is off. That girl had a blast. I noticed that she kept turning around to look at the really big kid behind her, but she was awesome the whole ride. When she got off the ride and ran over to me she yelled, “Mommy, I did it. I did the dinosaur!” OMG, it was so cute, and I am so glad that Dogomani talked me into it.

Once back at the apartment, because of course, it was a long uphill walk home, my body is done. We prepare fried chicken and French fries for the kids, have a wonderful meal together.

Towards the end of the meal, Sabou started saying, “Mama, Dogomani, hair.” She even brought her little chair over and sat in front of Dogomani so she could braid her hair. Yes, my little girl really loves her braids. That gave me time to play with Papa and Fatime until they were ready to go. Another awesome day.

Dogomani and I did have a little chance to speak about Mali, but not much, really just making sure that everyone is fine and safe. She gave me the same line, “I ka na kashi”

There is no posting from Bamako.

4/9/12 – Got to see an old friend

After a long morning meeting, I get an email from a friend of mine who has been living in the Congo for the past 18 months. She flew into JFK Airport this morning, and her next flight doesn’t leave until this evening. Would I like to have lunch? Would I EVER!

I called her and it turns out that she is in Astoria, Queens, which is just a few subway stops from where I work. It is also where my team went out to lunch not too long ago when I had so much trouble walking and dealing with all the stairs. I ask if she wants to meet me near my office, but no, she is hanging out with a friend who lives in Astoria. I get permission to take a long lunch and I am off, hoping for the best. Feet don’t fail me now, literally.

I’m walking so fast, can’t wait to get there. Do my best up the steps, panting like a dog on the subway platform, three flights up. When I get there, it’s down the three flights again, and my legs have had it. They are weak and shaky and achy and the sciatica is acting up. But I am determined. I see my friends and I just limp towards them. My friend notices and immediately she’s like, oh, I should have asked how you’re doing today. I said, pointing to my legs, “What this? It’s nothing. Let’s go.” We pick a Greek restaurant right there, mostly because I really don’t/shouldn’t/can’t really walk much more.

It was awesome to see her to catch up and to know that she’s back in the States now. She’ll be back in NYC in May, and I can’t wait to see her again.

Back at the office I am reminded of how useless I was the last time I went out to lunch in Astoria, but today, I was better. Not bad at all. As Sabou would say, “I did it!”

After work, I got inspired. No idea why. I had to go to the ATM anyway, and the ATM just happens to be downstairs from Chuck E. Cheese, the penultimate in kid entertainment – pizza and arcade games. So, not knowing what to expect, Sabou and I headed off to Harlem.

I ordered us a pizza and got her a bunch of tokens for the games. OMG, I have never seen anything like it. She was too short to actually see any of the games, but just tall enough to reach the coin slot on the machines. So, she just stood there, with her cup of tokens, randomly placing tokens into coin slots, and the most amazing thing happened. She kept winning. Every time she put a token in, a whole bunch of tickets came out of the machine. She just loved it, so she kept doing it, and more tickets kept coming out. The bigger kids were astounded and they tried the machines to get the same result, but nothing. Sabou, who couldn’t even see the screen or the game and had no idea what was going on just randomly kept winning. Within 5 or 10 minutes, she had accumulated over 200 tickets. I was laughing so hard.

Once the tokens ran out, there were a few tears and some tantrums, but then she remembered there was pizza and she was OK. I also let her sit on some of the broken machines that were shaped like cars so she could spin the steering wheel and stuff. She had no idea that it needed tokens to actually work because she couldn’t see the screen. It was such a fun time. At the prize table we picked up some random plastic things – glasses, a dinosaur, a whistle, a bracelet and a star, and you never saw a happier girl. That is until the glasses broke, then all Hell broke out on the subway and on the sidewalk going home. I attribute it to fatigue as well as the glasses, as well as this electric ride-on scooter that someone having a birthday party received as a gift. I mean like a real scooter, but for kids. She was so entranced by it that she kept screaming “Mommy, Car!” the whole way home, in tears. She’s not getting one. It would take up half of our apartment.

No new posting from Bamako, and I am still worried. I did find this on the Peace Corps website though. http://www.peacecorps.gov/index.cfm?shell=resources.faf.update As you can see, not a ton of information to say the least, but finally something for the friends and family.

4/10/12 – Conflicting reports

There are conflicting reports. You see, the international community and the media we receive speak of the return to normal, the return to the former constitution, the national assembly speaker taking over the presidency, the stepping down of the coup leader.

Yet, my Peace Corps buddy (http://bamakobruce.wordpress.com/) who has been blogging from Bamako, speaks and understands Bambara. He can understand everything that the coup leader says, all the statements are not getting translated by mainstream media. He tells a very different story.

Here are a few of the statements made in Bambara that the international community did not catch, as translated by Bruce:
“The committee [CNRDRE] is not going anywhere; when a group of soldiers takes power, nobody can sideline them, and that’s no joke.”
“After Dioncounda’s [National Assembly Leader] 40 days, the CNRDRE and ECOWAS will meet again to decide on the next steps to take.”
Sanogo also has alluded to his belief that God sent him to take down the president, and since he was successful, him being in power must be God’s will. This sense of divine intervention has not boded well for leaders historically.

So my suspicions seem to playing out. The National Assembly Speaker is being given 40 days to pull this torn apart country together, and there is no sign that the coup leaders nor the military are backing down any time soon. None of this feels at all hopeful to me. I can’t remember a time in my life that I have regularly felt such feelings of hopelessness for a country I love so much.

4/13/12 – Life without TV

OK, here’s a Lupus fog story for you. Tuesday night is Glee, and I pathetically love that show. Sabou is not as entertained by their antics as I am. I am sure that I hid the remote control that night so she couldn’t change the station. That was Tuesday. Here it is Friday, and I still can’t find that remote control. We’ve been stuck on Fox for the past four days, and I don’t think it is ending any time soon. One thing I notice is because the shows are not interesting, we barely even watch the TV anymore and Sabou, although she asks for it, and we put it on and leave the volume really low, has barely any interest in it and we find other things to do. Who knows, maybe I can save myself a lot of money on that cable bill. I’ll let you know when the remote returns.

4/14/12 – A Lupus Kind of Day

Today was a big day for me. Sabou had an all-day play date with Dogomani and her kids, so I could attend a Lupus seminar and a Lupus luncheon and then host an AVP meeting at my house.

The Lupus seminar was pretty informative and I got to ask my big questions.

1. What are your thoughts on Low Dose Naltraxone?
See, Naltraxone is used to treat heroin addicts. But in lower doses it’s been found to be effective for HIV, MS, Parkinsons, and auto-immune, including Lupus, but no one is really talking about it, and not much research is being done about it. She said that it looks very encouraging and we need to do more research.

2. Can I take two anti-malarials at the same time?
See because Plaquenil does not work against the strand of malaria in Mali, so I would need to continue the Plaquenil to help my Lupus and I would need to take Mefloquine to fight the malaria in Mali. Well, she said yes, if I were only going for one month. So that was good news.

3. What about the photosensitivity and traveling to a country where cold season is 100 degrees and hot season is 140 and the only relief from the sun is indoors, where it’s just too hot to sit?

As long my body is covered with sunscreen and sun protective clothing and a big hat, and I keep myself away from the sun, I should be fine. So, that was good news.

4. Would you recommend such a trip to someone with Lupus?
She said, you know, it’s not the malaria, it’s not the sun. My big concern is that if you go into a flare while you’re there, what are you going to do? I told her that my doctor found a Lupus specialist in Morocco, a four hour flight away. She said can you imagine taking a four-hour international flight in the midst of a flare? I said no. And there, like that, it hits me. It finally hits me. I may never return to Mali again, ever. I think I’ve known it all along, but never really felt it until this moment. And that was the bad news. So for right now I have the excuse of not traveling because of political unrest. When that ends, I’m back to my lame excuse of Lupus. Some days the limitations of Lupus and what it’s done to my life are just saddening.

Someone please tell me why I continue to attend Lupus seminars. They are just so depressing.

Then, because, I guess that wasn’t enough, I headed off to a Lupus luncheon at the place where I’ve attended a few support groups. What a great event. The place was teeming with Lupus warriors. I met some great people and reconnected with folks who had attended the seminar in April, and some who had been at today’s seminar. I even won a beautiful bracelet in a raffle. :) Being around others living the same thing is so helpful. Being around people who understand and get it is just amazing. Mostly because normal people may never really get it.

For instance, this evening I finally asked Youba if he would sponsor me for Lupus Walk. His response was immediate. “No, Lupus isn’t anything.” I didn’t respond, although I had quite a few responses. But later that evening, after Sabou went to bed and we were alone I said to him, “You really should donate money to Lupus.” And he said he would. I’ll let you know if he does.

I got home from the luncheon and cleaned the house in preparation for an AVP meeting I am hosting. Yes, I am trying to do better at inviting people to my house. It’s a great incentive to keep the place in order. It was a great meeting, and I had told both Dogomani and Youba that we’d be done around 7. Sabou came home with Dogomani and her kids around 7:10, and Youba arrived around 7:30 and my home was full of people. People from all sorts of places in my life and that was really cool.

Sabou had an awesome day with Papa and Fatime. She’s got adorable new braids, and had fun playing with a scooter in the park, running around free. I’m so happy for her. Dogomani can do for her things that I can’t and I am so grateful. So, for her birthday, I am thinking she needs to get a toddler scooter with two wheels in the back. You go Sabou.

And tomorrow we have our first soccer class. I am so looking forward to this. It’s bound to be completely adorable.

4/15/12 – Soccer in Central Park

Today was the pilot project – Sabou’s first day of soccer in Central Park. I looked and looked for a class that was near a subway, but no, no such thing exists. This one seemed like it would be the most convenient.

Now, I can’t use the stroller anymore because it’s too dangerous with Sabou fighting to be the one to carry it up and down the subway stairs. So, it’s me and her on our own. She is horrible in the subway. Refusing to sit down; then refusing to hold on to anything while she’s standing, and almost falling on her face several times, banging into people. I keep asking myself, why do I put myself and her through this? I have no idea.

Then we get out of the subway and it’s time to walk. We have to walk the length of three NYC Avenues: Lexington – Park – Madison – Fifth before we even get to the park, and then we have to walk through the park to find where our field is.

Sabou is window shopping, smelling flowers, stopping, asking questions, sitting down, walking up to people’s doors, taking her sweet time. I have no idea how far this is going to be, nor how long this is going to take. Our class is only 40 minutes, so to be late is to miss pretty all of it. I am determined to get there on time. As usual, our goals do not match up.

The worst and scariest part of the whole experience is when she refuses to hold my hand to cross streets and rebels by stopping in the middle of them. I hate that. It drives me crazy, and it usually ends up that I am carrying her across the street. This is something that she actually prefers, and then there’s no way to get her back down. Painful, tiring, exhausting little dance we do.

But, we do, somehow, no idea how, but we make it to our field, even a little early, so she got to watch the class before us. She is so excited. “Mommy Ball. Sabou play Ball.” And I keep telling her yes, that’s why we came so she can play ball. I’m naively thinking that is going to go very well.

Then it’s her turn, and guess who suddenly becomes extremely shy. Like shy, hanging all over my legs and not letting go kind of shy. A side of Sabou I have rarely seen.

What does this mean for me? Well, it means that if I want her to participate in the class, I am going to have to participate in the class, which means that I am going to be up and running and doing things in the direct sunlight. None of this is sounding very good. But, I am determined, and so there we go. I help her to stay on the field and follow the exercises. I try to sit down as much as possible between activities, but she always follows me and sits down on my legs.

She is not responding to the coaches. She is not following along with the song or the cheer. She is not interacting with the other kids. I feel very surprised. She is also not showing the coaches all of her skills. This girl can run, jump, kick, dribble, etc… but no, nothing. Playing it very low key. My initial response – blame day care and blame TV.

See, I believe that she is in front of the TV all day long at day care. And, while she is learning, “one, two, three, four, seven, eight”, and responds to the TV, like answering questions the characters ask, dancing when it’s time to dance, moving when it’s time to move, I just learned that none of these skills translate to structured time with a coach or a teacher or any other human being in a position of power. It made me sad. Sad that I’m holding her back from all she could be.

A quick visit from a co-worker who is jogging by in the park, a chance to meet her family, and it’s back to the class.

By the end of the class, Sabou seems to be trusting the female coach, and sits down with her and she is showing her how to do the hand motions for the song. I am so glad that I signed her up for this class, her first structured class with kids her age. I am determined to make the long trek every week to get her there. I am even more determined to get Youba involved so that possibly I won’t have to be running around under the sunlight which always makes me feel ten times worse.

We still have the long trek home. Before the day started, I was half planning to head to the Metropolitan Museum of Art, which is not far from the field and hang out there before heading home, but after more than an hour long commute and 40 minutes of soccer, I am done. The only energy I have left I need to use getting her home as safely as soon as possible. And again, those negative thoughts about how much I limit her with my limitations. I hate that. I hate Lupus so bad.

We make it home, with a stop for ice cream, and Daddy has been cooking a wonderful meal. We all take a two-hour nap and enjoy a dinner together.

Sabou’s friend Laya and her Mom come by for a very quick hello visit, and that was such a highlight of the day. Friends coming over means so much to me, like I never thought it would.

4/16/12 – I hate Lupus!

This morning I woke up in a terrible mood. And that’s a terrible way to start for Sabou and me. I know I want to get to work at a reasonable hour because I have a doctor appointment today, but Sabou has different plans. And her plans have nothing to do with getting to day care on time.

She refuses to get dressed. She refuses to cooperate. She starts asking, “Mommy, donut?” I’m like, hmm, if it will inspire her to get dressed, why not? We’ll go for donuts.

“Yes, Sabou, donuts, but we have to be dressed first.” It works, after a while, and now she’s dressed. Next is the adventure of walking down four blocks to the Dunkin Donuts. We make it; she is walking ever so slow, more of a saunter than a walk, but pushing her only makes things worse. We get her donuts, and it’s even slower of a time getting back up the hill. She starts mimicking the limp in my walk and I feel completely mocked. I know intellectually that she is just doing what she sees, like when she used to carry her bottles balanced on her wrists when my hands were too swollen to carry anything on their own. But it hurts. It reminds me of who I am now, and my limitations, and how all of that directly impacts her. I keep thinking it’s not fair to her. Not that it’s fair to me either, but I feel it more for her because she’s so young and life has just begun and she’s stuck with me all the time who can’t do half the fun stuff she deserves.

We make it home finally by me picking her up, having had enough of the antics, which always leads into her all-out tantrum complete with hitting Mommy.

I lose it. I need a time out really bad, for me. We get in the door, I leave her with her donuts at her little table, and I close myself in the bedroom, the only door in the house that she can’t open. She’s upset, she settles down, it becomes quiet.

I am all by myself, wondering if I should even go to work with this black cloud over my head, these feelings of sadness, of anger, of insufficiency. I tell myself, today is the day I call EAP. Neither me nor Sabou deserves this craziness in our lives.

I give myself a good ten minutes and gain the strength to check in on her. She is quietly eating. She looks at me with a big smile and says, “All done donut Mommy.” Success. I am calm. She had breakfast and we can head out to day care.

Sabou is extremely clingy, and won’t let go of my leg. We sit down on the couch together. All the other kids are in their chairs, sitting down to watch TV. This is what I figure they do all day. It makes me sad again, like I am limiting her potential, but I need to let all that go because 1. She’s not potty trained, so no real school-like day care will take her. 2. I need to get to work.

At work, I have the chance to speak to another mother of a young child who tells me that Sabou will be fine once she gets used to the coaches and the other kids in the class. I know that I was an extremely shy child, and terrified of new social situations. I so don’t wish that experience on Sabou. We just have to wait and see.

I guess there is something to be said about long commutes. It really gives one time for the transition from home life to work life. Once in the open cubicles, facing my assignments for the day, I immediately started to feel better. My old self came back. I decide not to call EAP. Not yet.

And then it’s off to the doctor; my first time there in six weeks, a big accomplishment for me. We look at my blood work. It’s completely normal, minus one test, which wasn’t even that bad. I had to make the joke, “Oh, so I’m cured?” Yeah, not quite. But I’m proud to report that I don’t have to go back for another two months now, and can continue to taper off the Prednisone, and will begin alternating between 2mg and 1mg, until I return to the doctor in June. For some reason I feel hope. I haven’t felt much hope these past few days about anything really, and here I am contemplating the possibility that I may be off of Prednisone by the end of 2012. Hey, a girl can dream, right?

Of course these good results always end up being bitter sweet, through no fault of their own, strictly due to my faulty thinking. So, my blood work is normal. Yet, I’m still having symptoms. I listed out for the doctor all the weirdness over the past six weeks: blurry eyes every day until noon; intense foot pain randomly one day and I couldn’t even put pressure on it; and the 1,000 pound arms and tingling in the hands. He checked me all over, my thyroid, etc… I’m fine. But I do need to see the eye doctor soon.

So, the thought process continues, if I’m fine, then these symptoms aren’t Lupus. If it’s not Lupus, then it’s me. It’s because I’m out of shape, because I’m stressed out, because something is wrong with me besides the Lupus. Your mind can work things out pretty fast if you let it. Well, I had no defense left. I started listening, figuring out how to get back to therapy once Youba graduates, how to find a Curves and begin to exercise again. Is any of this realistic? I have no idea. They’re all just passing thoughts for now. And I’ll feel really lame if it’s all been because I don’t belong to a gym.

There is news from Bamako. The economic sanctions were lifted as the interim president was sworn into office, with the promise of returning to the former constitution. Schools and businesses are open, and life is returning to normal. There is still much skepticism that this president will succeed after the 40 days, which the coup leaders seem to be viewing as a short term hiatus for them, gearing up to get back in the transition game on day 41.

4/17/12 – Airport

Today after work, I had a big adventure planned. I was driving to La Guardia to pick up a fellow AVP facilitator from San Diego, who is staying with me tonight and coming back for a few days next week. This was my first excursion to an airport since diagnosis. Why this feels like such a huge milestone to me, I have no idea.

And Sabou was so comfortable in the airport. She just sat nicely near baggage claim, playing with the payphones and the video call machine. She looked like a travel agent with the phone leaning on her shoulder, and typing into the keyboard looking at the screen. It was adorable. When the facilitator showed up, Sabou immediately grabbed one of her wheely bags and dragged it all through the airport for her, just like the stories Youba shared of their trip to Mali. It was adorable. She is so comfortable with travel and baggage and everything. Definitely her mother’s daughter.

And for me it was good too, because I got to see that an airport doesn’t have to be overwhelming, that Sabou can behave reasonably well, that maybe someday we will fly again together.

When we got to the parking lot Sabou said, “Mommy, Sabou fly?” Oh man, she is her mother’s daughter. I had to explain that Sabou is not flying, but who knows the future, maybe we will again.

And today there were barely any symptoms. I felt fine. I walked OK, felt no pain, no limping, no slow walking. It was awesome. I think because I was so focused on the normal blood work, the word REMISSION keeps coming up in my mind. Who knows? Maybe? I can’t get too excited, just need to take each day as they come because each one is so different.

I did a presentation at work today and it made me feel so good about myself. I took the skills I learned in that PhD program I’ll never finish and presented data to a group of colleagues. It felt so good. Now, we’ll be presenting to several other groups as well, and there’s talk of presenting at a national conference in November. As with everything, we just have to wait to see how I feel and what I can do about Sabou, bring my parents? You never know.

News from Bamako is not good today. The coup leaders have starting arresting members of the former president’s entourage; 22 people in total, some injured while resisting the arrest. Please remember, the coup has no legal right to arrest anyone, but no one seems to be doing anything about it. And the whereabouts of the former president are finally released. He is at the Senegalese embassy in Bamako.

4/18/12 – still no symptoms.

Yes, I’m still feeling good. Hoping this sticks around for a while. Fingers crossed. I had a lovely surprise from Sabou when she said, before 8pm this evening – “Sabou Night Night”. So we finished off dinner, brushed her teeth, and she went to sleep immediately, without issue, and without me in the room. Wow, I’ve got all this time to myself and I’m not stuck in fatigue or pain. It is a good night.

4/20/12 – Allergies

Today was a presentation on data that I’ve been looking forward to. It’s a way to link my PhD classes with my current employment and makes me feel less of a failure around my choosing to drop out of the program. The presentation went pretty well, I think. I wasn’t very stable on my feet and couldn’t wait to just sit down. A colleague noticed how I was walking and asked if I had injured my legs. I informed her that I had Lupus. She was shocked. She has a good friend with Lupus who has had a lot of trouble. She kept repeating how blessed I am, and I kept reassuring her how much I know that, and how I am thankful for every day that I am able to work.

Wow, my allergies are kicking up a storm today. I don’t even remember the last time my allergies bothered me at all. I know it’s been bad at work, with everyone sniffling and sneezing, and complaining how bad the pollen is. I’ve heard reports on the news to that effect as well, but really, up until now, I’ve had absolutely no symptoms. I just figured that with all the meds I’ve been on, the allergies had no chance.

Well, can’t say that anymore. It is getting bad. I call Youba and ask him to pick up some Allegra for me on his way home. So grateful to him.

Interesting news from Mali, amidst all the recent arrests, which seem to cover all kinds of high power individuals, comes the news of the appointed Prime Minister – Cheikh Modibo Diarra, a U.S. citizen, physicist who used to work for NASA, and Presidential candidate in the elections that were not to be. What strikes me about this choice is the fact that the Coup leader, Sanogo was trained by US military, on US bases from 2004 to 2010. The chosen Prime Minister also has strong ties to the US, to the point of becoming a US citizen, and having a job with NASA. It seems to be like somehow the US is connected to this coup. Very strange, and as I think this I remember that there is another candidate for Mali President with US ties, Yeah Samake, a Mormon convert to who studied at Bringham Young University. There has been no mention of him that I’ve seen since the coup though. And the tail just gets more interesting.

4/21/12 – Jersey City and Sinus Infection

Today we had a big day planned. A good friend came to accompany Sabou and me to Jersey City for a birthday bash, for both a good friend and her daughter. Well, with NYC train craziness, it took her two hours to make it from Brooklyn to the Bronx. We missed the initial surprise part of the party, and definitely arrived late, but it was great to be there. Great to see someone I rarely get to see now because of my fear of driving so far alone in the car with Sabou. Every time I go to Jersey City I am reminded of how much I liked living there.

The only weirdness today was that the entire left side of my face was in intense pain, like down to the teeth. I’m thinking, this is NOT Lupus. This has got to be the allergies, the sinuses. In talking with my friends and describing the symptoms, they agree. It’s got to be a sinus infection. Argh. I’ve never had anything like this before. I’m just hoping that it doesn’t stay around and doesn’t entice the Lupus to act up.

It was interesting to watch Sabou interact with the kids at the party. They were all a little bit younger than her, and she was slow to interact, much like she was at the first soccer class last week. I guess because she’s usually around older kids, that she’s just not used to this? Not sure.

One piece of good news came out today. Now that my NJ friend is graduating, she is looking forward to being able to hang out more, get our daughters together more often. This makes me so happy, I can’t even tell you. :)

After the party, we need to take advantage of being in Jersey City for the fantastic Indian food. We stop at a restaurant for some dosa and get Sabou this wonderful tamarind rice dish. Well, she lost it. We had a total tantrum and the only thing I could think to do was to get her out of that restaurant as quickly as possible. Luckily I was not alone, so I could just jump up and leave with my stuff (purse etc.) at the table, knowing my friend would be there. Yet another reason why I don’t travel alone with Sabou. What would I do if I were there alone and had to run out really fast? I really have no idea how single moms do this, and do it with such grace.

A long walk was all it took to calm her down. But now I’m walking out in the hot sun with no hat and no covering on my face, neck and arms. I’m thinking, oh boy, what kind of rash or reaction will I end up with, but I just kept walking. I needed to calm the girl down. I’ll deal with whatever comes up as it does. I talked to her and explained to her that we had to go back to the restaurant and she needed to sit quietly and calmly and eat her rice. Wow, somehow it worked. She was fine the rest of the time in the restaurant. Oh, and good to note, the girl absolutely loves Sambar!

At home, it was nice to hang out with my friend and just chill out. I don’t know what I would do without her. She is my link to NJ outings and I greatly appreciate it.

Sabou continues to go to bed without a hitch. I just tuck her in with her best buddies – Baby Poor Bear, Curious George and Dora, and she is good to go. This gives me alone, awake time in the evenings that are very welcome.

4/22/12 – Soccer in the Rain

So, today is the second day of soccer class and it is raining. I check the website, and only classes that start before 11am are cancelled. I know I have to go. I’ve already rescheduled two make-up classes for Sabou so we can go to see Angelina Ballerina, and attend Youba’s graduation. I think the limit is two, I mean there’s only eight classes. We have to do this.

I check out alternative routes since the last time there was way too much walking involved. It turns out that there’s a route from the subway right close to me to a bus that goes right down Fifth Avenue. Very excited, and we’re off.

It in no way takes as long as the metro website said it would and we were at Central Park by 11am, in the pouring rain. My girl doesn’t care. She heads right for the playground. “Mommy, PLAY! Sabou PLAY!” I find a place to sit under the equipment where it is dry and she has a ball, and she gets soaking wet and she doesn’t care. It’s a bit of a fight to get her to leave, but now it’s time to get to the field for the class.

The girl refuses to walk. She actually just sits down on the path, right there in the wet. I was like, OMG. So, I have to pick her up, grab the backpack and both umbrellas and carry her to the field. I’m like, great, what is this going to do my body? But you know what, you just do it. You really don’t have a choice.

We were the first people there, which gave me the chance to talk to the coaches. I let them know that Sabou really can dribble the ball quite well and that she really didn’t show them her skills last week. They were so nice and they were like, it was the first class. We aren’t even looking at skills the first week, just making sure the kids feel safe with us and have fun. I love these coaches.

Sabou was much more independent today. I didn’t have to run after her and keep enticing her to keep playing. She just followed along with the coaches. It was adorable, and I am so glad that we are doing this.

I also got to speak to one of the parents, from Brazil. He’s been doing soccer with his boy since birth. So cool.

Maybe it was the smaller group, only three kids today, but Sabou definitely seemed to be settling into the class. She even participated in the song, drumming on her knees. We practiced singing the song all week, so that was really cute to see. My favorite line in the song is definitely “We never touch the ball with our hands!”

Then, it’s time to head home. We walk to the bus. Sabou is starving and eating up all the sandwiches I brought for her. Once in the bus, she is out, completely asleep on my lap. Dead weight. So, here we go again. I need to carry her off the bus, while balancing the backpack and both umbrellas, get her to the subway, through the turnstyle, wait for the train, get her on the train, then back up the stairs and down the street to our building. Absolutely exhausting. I have no idea how parents do this. I think they just do.

Once inside, she’s starting to wake up. I quick get her out of all the wet cold clothing and into a hot shower. Got to get this girl warm and dry.

Then it was so cute. “Mommy, Sabou hair. Sabou hair. Please, Sabou hair, brush.” She wants me to take the braids out. That’s an afternoon activity in itself and it was fun. She just sat there and let me work on her hair. What a girly kind of day.

Then the exhaustion hit and my upper body is burning, aching, paining. I need to sleep. Youba isn’t coming home until 6. Sabou decided it was clean up time. She sings “Clean up, clean up, everybody clean up,” and proceeds to put away all of her puzzles, emptying the floor and vacuuming. So cute.

I’ve had it. I tell her I need to sleep and put the TV on. When I wake up about an hour later, I see that she’s gotten the puzzles out again and has them all completed perfectly on the floor. She’s sitting quietly watching Dora, her favorite program, and Daddy comes home.

Relief. She can play with him, and I can rest and try to heal this sore body.

After a bit of time, energy returned, pain lessened, and I was back on my feet, cleaning and straightening up the place, with help from my girl. See, now I know the secret song, “clean up, clean up, everybody clean up.” It really works.


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 25, 2012

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