Someone You Know Lives With Lupus

 
May is Lupus Awareness Month. Lupus, in its various forms, is a mysterious and difficult illness to live with. I’ll be talking about my personal challenges living with Systemic Lupus Erymathotus during the month of May.

Look online to see other fighters’ personal journeys. It could be that someone close to you needs your support. 

My Husband and I

My husband and I are not talking right now. That may not be a very good thing considering the tension in the homestead. See, we live in his parents’ homestead with his parents and two unmarried sisters who have children. His father is the local Redeemed Church Pastor. Everyone knows that my husband’s father is not really his father; but he raised him, so he is his father.

There are those who insist on bringing up the matter even though it should have been laid to rest a long time ago. The story is that my mother-in-law was pregnant when she got married to the man who later became the Pastor. It would seem that the father of the child in her womb was not really the man who married her. How many stories like that have you heard? I think the only important thing is what the Pastor feels about his son, my husband.

The Pastor has other sons, two of them. One of them works in Industrial Area and lives in Mukuru wa Njenga. The other is a cashier in a supermarket, and lives in Kibera. I think they are doing very well. My husband is a farmer, but when there is a drought, like now, he looks for work as a manual worker at one of those construction sites near our home, here in Kiserian.

As far as I have seen, the Pastor has always treated my husband as his own. When my husband first introduced me to his parents, the Pastor was very kind to me. His wife, my mother-in-law, was acidic from the very start. She hated me at first sight. There have been very many quarrels in this homestead. The Pastor tried to sort that out by cutting out a piece of land a few meters away from his own house and advising my husband to fence it out, and make our entrance facing the road, so we did not have to go into themain home when conducting our business.

That worked for a while but the troubles soon returned.

When I was pregnant with my second child – the first one was born while we lived in the main homestead – I had a little trouble. My blood pressure rose, and the doctor warned that if I worked, I would lose the baby. When the pastor heard what the doctor said, he ruled that his two daughters should be the ones to help me with my housework.

We- sheee! Thatwas the mother of all troubles. Soon there were stories that I was just pretending, so I didn’t have to do any work. And then an old friend from primary school came to see me, and there were more stories about how he was the father of the child I was carrying. By the time I had my baby by Caesarean, I was so fed up I wanted to go back to my mother. But my mother is poor; my babies and I would have been a burden to her. So I vumiliad and went back. Ngai! Those were the days I wished I had gone to that secondary school instead of getting pregnant and getting married.

You would think that now that a healthy baby was born inspite of the trouble, people would be thankful and get back to other worries. My Younger sister, who had just completed primary school, was asked to help by my mother. The rainy season had just begun, so I was worried about much more than my housework. But my sister is such a hard worker. Imagine she dug the small shamba we were given almost by herself. By the time my husband finished his kibarua and came to help her plant, she had cleared and dug so well that it was easy for them to plant in just two days. Can you guess what stories came out of that? That my family was taking over the Pastor’s land. That is just about when the matter of my husband not being the Pastor’s son came up again. There was such a big row, which made even the Pastor’s other sons come from Nairobi and demand their inheritance before the Pastor was ready to die. I have never seen anything like it.

At the end of it, with the Pastor foaming from his mouth, everyone was forced to sit down and listen. The Pastor said something that I will never forget. ‘I worked hard to get this land. But not everyone in this country who works hard gets anything. God gave it to me. And I will give it to my children, all my children.’ When he said that last part, he looked at myhusband. There was a murmur of dissent, but the Pastor had spoken.

I thank God for making the Pastor a reasonable man. Then I pray that someday my husband and I might be able to get some land of our own. He works so hard, you see. This homestead, mine and his mother’s would never lack for food if it was up to my husband’s hard work.

The quarrels have never ended. In fact, my husband is not talking to me because there was a story brought to me by Mama Cera down the road: that my husband was seen with another woman at a bar in Rongai. I was stupid because I believed it before talking to my husband. So I did not ask him about it: I confronted him. It was only later that I remembered that Mama Cera once sided with one of my sisters-in-law when there were rumours going round about me.

I guess I will have to find a way to get my husband talkingto me again. But I know as long as there is not enough — enough land, enough food, enough money — there will always be trouble brewing.

Love Brewed in an African Pot

Courtesy of the old man who just wouldn’t shut and let me read my book in peace while we waited in line, a memory has been sparked that involves the 1980 film Love Brewed in an African Pot.

I must have been 4 or 5 years old. My mum was talking to a friend of hers. I don’t remember the conversation itself but I remember that my mum said something about ‘love brewed in an african pot.’

I had no idea what love was. But I definitely knew what a pot was. We had a pot. It was a red earthen vessel that my Tanzanian ayah Maria had brought back with her from Tanzania as a gift to my mum. It was used to cook special meat stew that always tasted so delicious.

So the very next afternoon, I decided to make love brewed in an African Pot. I somehow knew Maria would not give me the red earthen pot to cook with. So I waited till she went to the market, and my big brother was busy with something, then I sneaked the pot out of the kitchen, stole away behind the house, past the big tree with those huge roots and wild tendrils hanging from its branches that my other brother had told me were called thina (also a kikuyu word for trouble).

Safely hidden from the house by the tree, I lit a fire with matches, also very definitely stolen. I had with me a supply of onions and tomatoes and some oil. salt and bizari, that I intended to use just like Maria always did. Once my main set up was done, I went off in search of love, different bunches of green leaves, some purple flowers, a red one and a wild berry that my named as ndongu  when we were on a walk one day.

I cut everything up nicely, fried my onions and tomatoes, added the leaves. Then some water to make stew. I was a pro, adding salt, and the yellow spice bizari, stoking my little fire etc etc.

I was just about ready to start tasting my beautiful love brewed in an African Pot, just like Maria did while adding salt and spices,  when my brother suddenly appeared. Then calling towards the house:

“Ndio haka nimekapata.”

Maria was there before I could swallow down the fear of a spanking. Then for some yet inexplicable reason she started screaming. Then she scooped me up, examined my mouth all the while asking with her panicked cracking voice:

“Umekula? Umekula hio supu yako, mummy. Si uniambie, aki. Umekula. Woi! Tuende hospitali. Bryan! Tukimbie hospitali!”

I did eventually manage to say I hadn’t eaten my special soup yet. And once inside the house, it finally trickled into my understanding that one of the leaves I had picked from my special soup were from a datura plant. It slowly dawned on me that if I had eaten my special soup my innards would have swollen up and exploded like those of the family that used to live there there in Kangemi. They were so hungry and new in town, so they picked wild greens from the roadside and cooked them only to die explosively hours later. (Probably urban legend, but you get the point.)

A number of things changed that day. Because of my innovative interest in cooking, from then on Maria always involved me in making meals for the family. My mother brought home a book on African Botany and when we went on walks we would try to identify plants. My brother also took a special interest in telling me the many ways I could die by fire.

The one thing that really bothered me was the demise of the special African Pot. Since I had used poisonous plants in it, Maria no longer felt comfortable cooking for the family from it. I had to watch as she broke it and threw away the pieces. I remember wondering why she hadn’t used it for something else if she couldn’t use it for cooking anymore. It would have been a great flower pot, like the ones in the front of the house.

Maria distracted me from that thought by telling me it was time for my nap, which usually meant curling up in my bed with another book. I liked that a lot.

A lot later Maria laughed when I told her what I was trying to cook that day.

“Mapenzi hayapikwi na jiko, mummy. Mapenzi ni mimi na wewe.” Never figured what that meant. Well, as an adult, I know what the well-adjusted view of love is. But sometimes, the sneaky thought that the pot was dashed to pieces creeps up on me.

Pot

But even more terrifying is the idea of innards swelling up and exploding. ( I was going to put up a photo of exploding human torso but my good sense has won over.)

Ha! Have fun psychoanalysing that one!

Courage in the Face of Fear and Despair

I’ve been walking about feeling just a little dazed and wondering how those who have lost loved ones are feeling in the face or murderous terror.

Knowing that human beings are only capable of becoming worse perpetrators of atrocities such as the Garissa attack doesn’t help.

Having hope and believing in something does not take away the immediate sense of loss and hurt.

So when I walked in on Owaahh working on the NotForgotten database I was still in selfish despair mode.

I asked him: “Doesn’t it depress you, working on all these names, realising that they are all human lives that we’ve lost, for senseless reasons?”

And he said: “Someone has to do it. Otherwise they will be forgotten in no time at all. So… someone has to do it.”

We need more of these brave souls – Morris Kiruga, Ory Okolloh and the many others who are leading the campaign to memorialise the 147, as well as all others we have lost in terror attacks – to remind us not to give in to fear, to keep going when things get tough, to keep changing our little corners of the world, by standing up against corruption and crimes against humanity and holding on to our sense of decency and humanity in the face of fear and despair.

War Chants

They walk right amongst us you know

Souls and hearts overflowing with hate

Waiting for justifications to tip the scales 

Calling it tribe, religion or disillusionment

Calling out war chants of organized insanity

The broken mind is so much worse in this

Than the twisted limb you look down upon

When you do set up the ramifications

When you do launch the routing maneuvers 

Where will you keep the heart that is breaking?

Tolerance & Decency

My favourite quote this year is:

True Tolerance has decency as its boundary.

The point being that in order to show true tolerance you do not have to abandon principles that you hold dear to your heart. That your boundaries are valid and walking away from anything that violates your sense of decency is your right.

I tried to explain this to someone in the office, and in the course of a discussion, I realised that a lot of people interchange upholding their principles with imposing their beliefs and preferences on others.

Here’s the most extreme of scenarios that came up:

A young woman declares that she will not give birth to any children because she believes that the world already has enough children with no parents and that she would rather adopt one of those parent-less and create her family through adoption.

A young man rises up, clearly irked by this declaration. He declares that this woman is stupid (!!!) and is standing in the place of God (!!!) by making such a choice. He goes on to say that if she were his wife there would not even be a discussion about this. (!!!)

A second young man speaks, much more softly, but with as much disrespect, obvious misogyny and quite a bit of patriarchal disregard. He says that if the young woman above was his friend, he would try to correct her, with guidance and counselling until she saw how wrong she was. (!!!)

At this point, I am quite honestly frothing at the mouth. This has veered so far away from the issue we were discussing, but in a very strong way, it demonstrates my point above.

We are not even talking about moral choices here, which is a whole different ball game by the way. We are talking about lifestyle choices. What in the world makes someone think they have the right to decide what is right or wrong for another person’s life? (P.S. I took a break at this point of writing this piece to go and sort out my thoughts because just remembering the conversation made me furious again.)

It occurs to me that the reason people keep making mistakes and living horridly miserable lives is because they impose on themselves and on others these stupid limitations on what is acceptable in the eyes of man and God on the basis of traditions that have no place at all in the decision making process.

Whether you get married, or not?

When you get married, and to whom?

Whether you have children, or not?

How many children you choose to have?

Whether you adopt or give birth to your children?

These are deeply personal decisions that should be made by the people whose lives will be affected by those decisions, namely. And no one outside that boundary should have the right to do any more than express an opinion (not a judgement and definitely not an imposition of what should or should not be) and back all the way off.

Things get a little murky when it comes to moral choices.

It is clear to everyone that murder is wrong. Does the killing that takes place in war count as murder?

What about when you bring in pro-life and pro-choice issues? What about when a pregnancy going to term means the death of the mother? What about children conceived from rape? Who gets to decide what is happening inside a woman’s body?

How do the issues above differ from the choice a woman makes about what she wears to work this morning?

I keep going back to the quote: True Tolerance has decency as its boundary.

Firstly, it is important to note that YOU should be the only one to determine the limits of tolerance and acceptance that you uphold. What you base those limits on; common sense, tradition, moral choice, conscience, faith, holy books, is also up to you.

Secondly, and possibly much more important, you should recognise that the sense of decency that is to be upheld is yours and not the other person’s.

Thirdly, remember, YOU uphold those boundaries of decency on YOURSELF. You DO NOT impose them on other people.

The Long Ride with Pain

Lately, I’ve been reading a lot about coping with chronic pain. Everything from diet changes to forms of exercise that can help me either cope better with pain or reduce levels of pain.

I haven’t been coping very well. I go through these phases:

– Okay, I can feel a bit of pain so I am going to ignore it and focus on accomplishing planned tasks for the day.

– Shhh… If I ignore it just a little longer I can finish this up before it gets really bad.

– It’s getting worse. Now I’m running a little fever. (My pain is often accompanied by low grade fevers.) Maybe a quick shower, a drink of water, have I eaten?

– Can’t ignore this ish. A walk, play with Guillermo, something anything to distract me.

– I can’t think. This is bad. Stop banging doors! Just shut up! Don’t talk to me. I can’t stand the pain. Ok, I have to take the pain pills now. Clearly the daily prednisone dose is doing nothing.

– Curls up on the floor and try to rock sideways. Generally helps me endure for an hour or so. I hate everyone and everything at this point. Occasionally pain episodes also trigger migraines. That is a trip on its own as in addition to pain I start getting visual hallucinations – I see sound.

– I’m sweating by now, the pain is one long sound now. More pain pills. I take a combination of analgesics, antipyretics, anti-inflammatories and Vitamin B combinations which are good for nerve pain.

– If I’m lucky, I’ll fall asleep for an hour or so. When I wake up, I’ll either continue with the pain, or it will have passed and I’ll be left wondering if I imagined the pain.

So yes, I’ve decided to be just a little more pro-active about managing my chronic pain.

One thing I’ve realised is that it is not my journey alone. The people living with me try really hard to understand what I’m dealing with. But even I can tell that it is quite a strain on them just understanding my rollercoaster rides with pain.

My mum has tried her very level best, including offering to drive me to and from work appointments which is not something small as it takes a huge chunk of her time. But I can’t safely drive myself anywhere, even less so on longer distances. It means a lot that she can make this sacrifice so whatever else, I am truly grateful for this.

It is a long journey.