Beyond the Absurd: Life with Lupus

by Mary Kay Diakite, LMSW

Editor’s Note: Introducing Mary Kay Diakite, a dear friend since 1992. Mary Kay has graciously agreed to contribute her blog on her new life with lupus, which, ironically, kicked in big time on a visit to Milwaukee to see me and present at a Peace Corps conference in Madison the last weekend in March. Lupus is an autoimmune disease that none of us knows about until it affects us or people we care about. As Mary Kay does with all phases of her amazing life, rich in cultural, geographical and human diversity, she treats her latest challenge with humor, research and intelligent determination. Last year, Mary Kay also contributed to PeaceOfMind an article on reconciliation with the people of Iraq.

8/13/11 – New symptoms and last family trip before Siaka goes home

There’s been weakness and some muscle pain, and times of just not feeling good and not feeling myself. That’s how the week began on Monday. Even my boss noticed it. I said, “Yes, I guess I’m having a bad day, and since I haven’t had one in so long, maybe it was just time.”

Yes, weirdness abounds with this disease, and I just need to take it in stride. Much easier said than done. On Tuesday, I did too much: too many staircases, too many subways, too many times trying to live as I once have. Little Siaka even noticed my difficulty on the stairs. I just told him, “Yes, I’m not very good at stairs.” The last thing I want to do is freak the kid out.

But, my body could not take it. Later that night, I was sitting at the computer and my right hand started to shake uncontrollably, like a tremor, like I’ve seen with Parkinson’s. It freaked me out, and I couldn’t stop it. I walked over and showed it to Youba. The kids were sitting right there. I felt bad, I really don’t want to freak them out, but it was so weird, and I didn’t want to go through it alone. I quickly went over to sit on the couch and just held it with my other hand. So weird. And again, I just felt defeated. Defeated with each reminder that I am not completely well. Defeated by being conquered by even daily living. It bothered me tremendously and I need to just take it easy.

Wednesday, again I was weak. I tried to avoid eye contact with people. Just wanted to stay at my cubicle doing the best I could. But there were meetings. I was so thankful that I didn’t need to report on anything. I couldn’t think of anything to say. I was having trouble just having creative thoughts. A little bothersome, but some days we just need to go slow.

On Thursday, I had two auras, count them, two auras. That’s the first time. The first one came in the subway on the way to work. Luckily, I was able to find a seat. It ended before I got to my cubicle. Then that night, on the way to Rhode Island, I had a second one. Luckily, Youba was driving, or I don’t know what would have happened. Two in one day. What does that mean?

Friday morning we took the kids to the beach. I was all bundled up in my Coolibar Sun Protective gear and the kids played with Nana and Youba in the sand, neither one very interested in the water. I left them there to play and went to get my hair done for the first time in like 8 months. It felt so good to be so spoiled, and now my hair looks great again. The hairdresser, who’s known me for some time, commented that it doesn’t seem like my hair is falling out, which surprised me, because I keep finding it everywhere. He said because my hair is so thick to begin with, losing a little bit of it only makes my hair looks better. I hope he’s right, and that it doesn’t continue to fall out at a great pace.

Friday was also the first time I saw extended relatives since my diagnosis and the hospitalization of my cousin. First we’d talk about him, how he’s doing, how the family is holding up. I just can’t imagine. It looks like he’s moving to a rehabilitation center. Then they’d ask about me, but really, I am fine, comparatively speaking. There is nothing I can complain about really. I spoke of my gratefulness for work and life and family and the ability to be up and around. It’s hard to think like that when I’m by myself sometimes, but around them, I know I really have no problems, compared to what they’re going through. Need to learn gratefulness.

Then yesterday, we’re driving home from our beach weekend in Rhode Island, and I’m driving, when suddenly the road feels like it moving off to the right. Like the whole road and world is going off-kilter. That really freaked me out. I tried to pull over to the side of the road, but that made me even more dizzy. So, I just kept going until we finally made it to the next rest stop. Yes, Youba definitely drove the rest of the way home. And I made a very strong mental note that if there is not another adult in the car, I cannot drive long distances.

And Siaka is going home. I know that Sabou and Youba will miss him very much, and so will I. Sabou calls him Sheesha, which is just adorable. The house won’t be the same without him. I think we did succeed in giving him a good time in NY. He saw the Bronx Zoo, Brooklyn Bridge, Chinatown, Times Square, Bronx markets, Staten Island – from the ferry he went right by the Statue of Liberty, and then a weekend in Rhode Island, on the beach, in the backyard little plastic swimming pool, and an airplane museum. He’ll have many stories to tell his brothers when he gets home.

Here’s a link to another definition of what living with lupus is like:
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Last edited by Tyler Schuster.   Page last modified on August 15, 2011

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