Bring the Music! #Lupus Diaries

I had a rough day today. But I was determined not to let it bring me crashing down. So I bit down on my jaw and dealt with cycle 2 of chemo. No radiotherapy for a few more days, thank God! I was doing pretty well until the lady in the chemo couch next to me decided to deal with a bible-thumping praying companion.

I don’t think my chemo neighbor is against prayers as such. From what I gathered of her completely unexpected outburst, she was only against prayers that ignored all facts, negated all efforts and wished upon dying stars to rain down miracles, ‘so you can go home and not have to deal with the fact that I have bloody-bad-word cancer!’ I suppose this was made all the more worse by the fact that the bible thumping prayer warrior was not an every day companion but someone who had come to visit about 4 months after diagnosis and was not entirely aware of the many battles, triumphs and defeats in-between.

There was silence. Then I came crashing down with hysterical laughter-sobbing-oh-my-lord-I-am-emotional-about-someone-else’s-family-fight!

It got awkward. Prayer warrior eventually walked out and left cancer warrior with her generals – an ever present husband and a daughter taking time from work to hold mama’s hand. Daughter crossed over and held my hand, gave me a wet wipe for the crazy tears and then we started telling tales of the awkwards, the ‘don’t say you have cancer’ or ‘lupus’, the many ‘if you accept it, you have given up’.

It is awkward. It is horribly awkward. You don’t understand it because you haven’t lived this war and come out wanting to be alive more than anything. You don’t see how a human with their mortality served up as breakfast every day can still love, laugh and live without giving up. Surely, where death lurks behind the door there shouldn’t be music, dance and laughter!

All you can see is the mortality. And it makes you feel awkward and helpless. So you are tempted to pretend that a miracle will happen and this will just go away. You wish. Because then you can stop feeling helpless, and awkward. So you pray, and wish upon stars, except maybe you don’t really do that for us. You pray and make those wishes so you can feel better. 
Of course, we value your prayers, and your thoughts. It means we are not entirely alone in this battle. 

But this war, this war has camped and dug its heels in our front yard. We can’t wish it away. We wake up every morning and count our ammo and our wilderness survival supplies. No choice about it. 

We think about the ambush the enemy may have planned, or maybe not, but just in case, we prepare. Sometimes, we are rousted from sleep, and routed into the battlefield before we are quite awake. So we have learnt to go to sleep with the weapons ready and the supplies at hand. Some of us even sleep with our boots on. So yeah, a sleepover might be awkward, awkward for you at my house, awkward for me at your house. Yeah, maybe it won’t happen.

When you discover that we have an inner circle of warriors, people who step into the closet with us and hold us as we wail with momentary despair, who join us in shooting blindly at the bogeyman through tough and dark nights, sometimes hitting the mark but most times not, who keep on marching with us when we dare march the battle in the daylight, who drive the demolition derby with us whether by sunlight or spotlight, never tiring, always on guard, always fighting…

Of course, it is awkward. Because it is not your war, and this one is not your battle. Unless you choose to make it yours, and join our army of warriors. And even then, some corners will be awkward, but at least then, you’ll have committed to the awkward, the waves of helplessness, most of the insanity and pretty much all of the GOOD TIMES!

Oh yeah, we have those too. Good, really great times. But chances are you’ll probably only witness them if you are in the inner circle. So don’t feel pity, or sadness, at least not for us.

We value your kind thoughts, and your prayers. But maybe don’t try to fix it. Don’t try to wish or pray it away. Pray, instead, that we have strength to fight one more day, that the medication and therapy choices work, that we see more of sunshine and laughter than darkness and pain.
If you really must step into the battleroom, bring the music and the dance and the laughter. Except maybe not so loud, but bring it!

Forgetting the Spades I Haven’t Got

Living with a chronic illness, or two, means that you choose to accept your condition and then do the best you can to cope with the bad times (which can fill up the landscape) and deal with the good times.

A friend of mine pointed out that the good times have to be dealt with. Occasionally, you will wake up relatively pain free. If you deal with depression as a side dish to your chronic illness, there will be a day when you wake up with a somewhat clear head and loads of energy. Then what? My MO is to panic and try to fit in as much as possible into my life before the clouds come crashing down. This method brings on the crash sooner and harder. Which is what my friend was pointing at.

I am slowly teaching myself to accept the bad times, deal with the pain, take care of myself physically as well as emotionally, ask for help when I need it, be less negative, hope that fellow humans have enough goodwill, excel at my work even when my health kicks me in the gut, be kind and generous to others…

What is taking me longer to learn is how to pace myself when the good times come. I want to love with everything I have, I want to live with everything I’ve got and I want to dance, sing, swim, play, laugh… And when I think I can, even for a little while, I want to do it all… then I am afraid it will go away too soon.

I am going to have to learn to devour life with the spoons I’ve got, and not worry about the spades I haven’t got.

How to Deal with the Spoons you Get:

If you have Lupus, you will have moments of sadness – just like everyone else. But your sadness and lack of vigour may be compounded and lengthened by pain, medication that change your brain chemistry or even by Lupus affecting your brain chemistry. So yes, you will likely face depression. How can you cope?

1. Talk to your doctor if you feel depressed. Your doctor can help you figure out if you need adjustment for your meds or need to see a mental health care practitioner.

2. After initial diagnosis, you will go through the stages of grief – denial, anger, bargaining, depression before acceptance. Try to actively reach acceptance of your diagnosis as this will help you start to take the right measures to take good care of yourself. If you are in denial or still bargaining, you will likely not take your meds properly, you will not be able to see how to adjust your life positively. If you are angry you will lash out at people who care. So talk to someone about your feelings.

3. Talk to yourself. Use positive self talk and avoid negative self talk. This is a tough one as you will have to actively look for things to be grateful for. Making adjustments to your life will help. Understanding that adjustments from the normal way of doing things does not make you less valuable is key. For example, I can no longer handle a daily commute to work and there will be times when I cannot work for hours. Rather than give up and give in, I decided to negotiate for alternative terms of work that allow me to work from the relative safety of my home at relatively flexible hours.

4. Surround yourself with supportive people. Probably one of the first things my doctor told me when I got my diagnosis is that having negative & difficult people in your life will kill a lupus survivor sooner than the disease itself. It can be hard to cut out those parts of your life that make it harder for you to cope, but it is absolutely necessary. Don’t apologise for wanting to have a positive environment.

5. Take one day at a time. Don’t worry about all the things you have to do. Be organised and then do what you can when you can.

6. Watch your moods closely. Do you feel worse after eating certain foods or doing certain things? When do you get highs and when do lows hit you? Keep a journal so you can work out the patterns. Then determine to change the routines that make you go into depression.

7. Keep a list of ways to feel better. I can’t go to the gym every day, but 45 minutes of exercise every other day keeps my moods stable. Reading certain things lift my moods. I am fortunate that I can still keep pets and spending time with my dog makes me feel better even in a down in the dumps day. I still have no idea how to deal with human beings as outcomes can be unpredictable, but I am generally aware of which type of human beings make my day better.

8. Connect with your spirituality. This means a lot of things for different people. It can mean anything from prayer to writing, drawing, photography, helping those in need, really anything that makes you appreciate life and the universe. For me, this takes on a deeply personal effort to maintain certain routines that are essential to my spiritual well being.

9. Lastly, stay active. When in pain, you don’t want to or are afraid to move. But activity makes you stronger, provides a circulation of endorphins and lifts your spirit. Identify a form of exercise that works best for you. Don’t overdo, but don’t freeze up in fear either.

So there, let’s go: Eat life with the biggest spoons we’ve got, forget the spades we haven’t got!

The Girl Who Loved Books

There’s nothing like a bunch of book nerds on a road trip with no psychedelics. And by book nerds, I mean all of them, driver included, in a van to Eldoret. There’s a book title in there.

What do they talk about? Books. Science. Books. Pseudoscience. Books. History. Books. Comparative Languages. Books. African History…

And at some point, someone is inspired enough to compose Kikuyu Romantic Poetry which roughly translates to:

Her face was shining like the sun,

The scent of Rosemary clinging heavy against the sheep oil,

Her face adorned with a halo of buzzing flies…

 No, I did not say they were poets. Just a bunch of book nerds sent off to deliver 1000 books donated by the Varkey Foundation to the Kipkeino School Community Library under the Start a Library Project. The beneficiaries of the books include the Lewa Children’s Home and members of the community surrounding the school. 

But back to the road trip…

My new assignment now involves a number of these trips every month. Last month sent me to Kandutura, a place beyond the Ndeiya I used to hear off in the same phrase as: why are you behaving like a kariko from Ndeiya, usually when I wiped off a runny nose with the back of my hand. I was five!

Kandutura was not as long a drive as the road to Eldoret. But it was a long drive through country I had no idea existed. Beautiful, almost unadulterated.

And the look on these children’s faces when they realize that they have access to all these books. Such joy that makes me realize just how much I took for granted my mother’s efforts to give me access to books all through my childhood.


Partner in crime, Namulanta of the Varkey Foundation (centre) shares books with students from Kipkeino School

But the road trips themselves have brought something new to my life. As a Lupus Soldier, I’ve spent the last 5 years of my life living in fear. Fear of infection. Fear of getting sick suddenly, in public. Fear of being a burden. Fear of death.

These road trips, they haven’t negated the fear. They’ve just brought this burst of fresh air and hope, and along with it a clarity that I hope will give me courage to keep going, keep living while I still live.

So on the way back from Eldoret, with pretty much every nerve in my body buzzing with pre-exhaustion, I give in to a game initiated by the girl who loved books. Stringing up conversation on phrases made up of book titles. Book nerds, I said. 

Tomorrow, I’ll probably not be able to get out of bed, I can feel the fever coming on. Dr. Tomas will be furious. But I am happy right now.

Also, as has been the custom since our first road trip, I am gorged on Indian Sweets. Bliss.


Oh la la! It’s Been Done! Storymoja Read Aloud Breaks The World Record!

The Storymoja Read Aloud final official tally has unofficially broken the World Record for Most People Reading Aloud from the Same Text at the Same Time from Different Venues!

The Storymoja Read Aloud held on June 15, 2015 managed to rally together 229,043 children from 1,097 schools across 44 counties. This number does not take into account the number of teachers, volunteers and reading ambassadors who joined up with the children to read aloud from the text of ‘Attack of the Shidas’. [Photos from the June 15 Read Aloud]

The current world record is held by the USA with 223,363 people in 909 venues.

The previous Storymoja Read Aloud Tally for the event held on January 30, 2015 was 160,190 children from 422 schools in 12 counties.

The Storymoja Read Aloud is part of activities held by Storymoja and Start-a-Library to excite children about reading for pleasure.

Start a Library also works to increase access to books by forming or stocking libraries in Primary Schools. This is in reaction to the fact that countrywide, there are more than 20,000 Kenyan primary schools without libraries. That means that only 2% of public schools have libraries!

Start a Libray works with partners to remedy this situation. Their most recent library partner, the Varkey Foundation helped to stock total of 22 libraries with 1000 books each. Each of the schools benefitting from the Varkey Foundation partnership also receives a furbished container room with book shelves and a librarian’s desk and chair.

Start a Library also runs reading clubs in schools. The reading revolutionary teams help to start these up and run them in partnership with school management and volunteer reading ambassadors.

Individuals and corporate organizations can sign up to donate books and funds to the Start a Library project as well as donate time to help run reading clubs as well as participate in the Read Aloud events. [Read Experiences from Volunteers who participated in the June 15, 2015 Read Aloud Event]

Corporate Organisations can sign up by writing in to Individual volunteers can sign up by filling in a form on­­

The next Storymoja Read Aloud will be held on 29th January 2016. Start a Library hopes that with your assistance and support, 1,000,000 participants across the country can be rallied to read aloud!


For More Information please contact:

Storymoja Communications Liaison: James Momanyi


Phone Number: 0722472963

Growing Up Diary

I keep a little diary of things that happen to me. The entries are varied. Some sad. Some quite funny. Some just weird. Others life changing. I guess that has been my way of keeping record of the process of growing up. I usually sit down at the end of the year and read the journal I keep and choose the things that touched my life most, the things that stood out of all the others and the things that just make me laugh.

As I read the old journal and pick up events for my Growing Up Diary, I learn and relearn lessons. I laugh at myself sometimes. I cry for what I hadn’t allowed myself to grieve for. I see things in the light of retrospect. And I know that some things I will never repeat and that I would do other things just the same if I were given a second chance. I know what I would do differently if I were given the chance.

So one morning I looked at my diary and it reminded me of the time when fireants invaded my home in Mtwapa, Mombasa. I woke up to the strange rustle of the fireant armies crawling everywhere. In a panic, I peered over the side of the bed and the site of the crawly insects made me do the exact opposite of logic. Instead of staying on the bed where I was safe for at least a while, I jumped off the bed to try and make it to the living room. Bad idea, I soon found out that fireants can move very fast. One found its way somewhere I would rather not have had it and decided to take a bite, too. I tried to get to it but couldn’t do that fast enough. It bit me again and I kept trying to get it off while still running out of the house. Out on the little dusty street in the respite of the morning breeze, I decided that the best way to deal with my furious little foe was to deny it of clothes to hide in. So I took off the one little scrap of clothing I had worn to bed. I heaved a sigh of relief as the pesky little thing fell. Then I realized that my sleepy little village had woken up and everyone was out on the street. All of them….

Then there is the entry for November 10, 2001. It was a day that might have been very beautiful. By 8.00am there was blue sky and ideas of going down to the beach for a dose of beach soccer and a swim. That was cut short when my cousin showed up at the front door. I was excited because he lived all the way in Malindi and his job made him pretty much unavailable, so I hadn’t seen him in a while. But a look on his face killed my excitement and infused a feeling that something horrible had happened. By the time he sat down with my mother, I knew the horrible that had happened even without his saying so. My brother had died. That ushered in a period of denial before I accepted my loss and allowed myself to grieve for my brother.

August 15, 2003 was just weird. I walked into the Public Library on the Island, and bumped into a very short person. I felt a strange jolt of recognition but just could not place the face I saw, a face not old, not young, not unique in any way such that I can still not describe it in detail, yet a face I knew. I ignored the feeling and went into the library for a few hours of reading. When I came out again, I bumped into the same person. This time, he grabbed my hand forcing me to stop. I thought I was being mugged or something like that. But he looked straight into my eyes and said quite clearly, “You will find the answer.” To this day I still think I might have had a minor psychotic episode that day. I never saw that person again once he walked off leaving me feeling shaken. I still think I recognized him from somewhere. I am not sure what answer he meant I would find. But the thought comes to me when I am in pain or uncertainty of one kind or the other. That with time, I will find the answer to it all.

Two and a half years ago, I mourned the loss of a very good friend who taught me more about myself than I ever had the chance to learn on my own. Here’s what I wrote:

Dear Khalid,

I am writing this letter now, not because I have figured the answers out, but I realize that without you, I have to work it out on my own, by myself.

It has been a very long journey, short for you, tall for me. I should have realized that I had very little time to learn from you but I was too busy being a brat to see it. Someday, if I should ever achieve any of the goals I aspire to, if I should ever become a voice of reason, a force for positive change, you will be one of the people who made it possible.  I haven’t got there yet, but I have reason to work harder now.

Today, as I took the long walk across the city, I thought of you, and all the lessons you have taught me. It has been very painful over the last few weeks coming to terms with your departure to what you called, ‘the better life’. Today, I could still feel the pain, but my mind was incredibly clear.

I remembered, I cried a little bit, people stared, I walked on, and then grinned aloud with the memory, people still stared, I laughed, then they stopped for a second and I walked on laughing and crying at the same time.

Do you remember the twelve-year old you took under your wings? I don’t think life has ever been as painful as it was then.

But you taught me to look at the best in it, to learn from the pain, to fight against it and be the best I could be. I know I have failed you so many times since then. I give up, break down and lose hope, but you have been here, far away but always close to me, teaching me to get up and back on my feet again.

I will have to do that on my own now; remind myself how to get back on my feet when life throws curve balls at me. Curve balls. I remember watching baseball with you, and hating it all the while. I still have no idea what that American sport is about. You loved it, and I loved you. And you insisted that there is a lesson in everything.

There have been a few more entries since then. Breaking up with a lover here. Some revelation there. A new friend here. Life in general. Keeping my diary reminds me. Decisions. Mistakes. Events. Changes. It reminds me of the course I want to take, and the mistakes I never want to repeat. It helps me to evaluate what is important now, and what isn’t. I can move on, because I can look at my past.

When the Chill sets in…

I grew up on a street, where I could come home from school, and play kati, bladda, and a weird kind of tennis – played with a piece of flat wood, and a tennis ball. The grown ups on the street looked out for each other’s kids, sometimes even disciplining their neighbours kids, but mostly just letting kids be.

No, it was not a century ago, and it was not in some Utopia. Shit happened on the street I lived in. The boy with manic depression who lived with his folks in the very last house on the street, was gang raped not very far from where we lived. No one really found out who did it, and if they did they kept their mouths shut. He ended up being institutionalized for a really long time.

The guy who lived in the house next to us was arrested in 1999. Apparently he had been an armed robber for a really long time. And to think he was kindest to us kids. But I think what confounds me is that no one really knew what he was until after he got arrested, and this in a place where everyone knew pretty much everyone else and their business too.

I left my little hometown at 21, and vowed never to return. That little town holds some of my very best memories, and some of my worst. I guess I never quite expected that I would miss that little town, but I do. I’ve spent the last few years loving the big city, the drama, the opportunity…

But during the quieter times, I miss waking up to the muezzin’s voice as clear as crystal against the early morning breeze. I miss the clear blue skies against the morning sun. I guess I feel it more now that the bloody Nairobi weather is so freaking cold. When the chill sets in, I am lost in nostalgia. I miss the jade sea that carried my tears, the cream sands where life is taught against the ocean wind, the palm trees that see it all, the mangrove strands that hide the secrets.

I guess I miss him too.

Teen Jaywalker – A Short Story

I turned 16 sitting in the backseat of a battered Navy Blue Double Cab Nissan pick-up truck that smelled of hay, cattle, sea and fish. I was smoking a tobacco and marijuana cigarette, studying for my High school Physics finals, hoping that my mum would make it through the second surgery that week and trying to ignore my scruffy 26 year old secret boyfriend’s horny groping.

6 days before, I called him in the middle of the night, because my mum was running a cold fever and complaining of intense stomach pains and vomiting blood. He came racing his pick-up truck and rushed my mother to the hospital. She had to undergo emergency surgery on an ulcerated duodenum to stem the bleeding. This second surgery had come up when she started bleeding again the day she was to be discharged from the hospital.

Mum first took ill with tuberculosis about six months before the bleeding ulcer. She had been under a lot of stress before that. The stress had come from the fact that she had had to move away from Nairobi to Mombasa in the hope that the distance between the two cities would be enough of a hindrance for her violently aggressive ex-husband. Her family had disapproved of her decision to leave her husband, and made it clear that they wouldn’t support her. Stubbornly, she had bundled me and herself into a bus and down to Mombasa.

Landing in Mombasa, with the last of her savings, my mum found a tiny little backroom in a Swahili house, bought a mattress and a stove, enrolled me in school and sent her self off to work as a typist at a large tea export company. There were several jobs after that, they got better as we moved on. I passed my KCPE exams a couple of years after the move and was accepted at a private prestigious high school on an 80% scholarship. We moved to a better apartment and there were all the dreams. Then mum got sick.

The neighbors and church people talked in hushed tones claiming that my mother was a prostitute, that is why her husband had kicked her out of home and was now dying of AIDS. No one offered to help. Those who came by would talk to me over the fence. My relatives chose not to help even though I called them collect a few times.

My scruffy friend broke the rules. He knew my mother from church and me from the community soccer pitch near the Chief’s camp. When he found out my mother was sick, he visited. He brought my mother food, drove her to the hospital appointments, stayed with her just talking about nothing, picking me up from school on the days I had late remedial classes and later on doing his best to stick his tongue in my mouth as far as it could go.

His parents, Reverend and Mrs. Githinji, were scandalized, though they would positively have died if they knew he was trying to hook up with me, too. All they knew is that their son was being kind to the unholy woman with AIDS. That bothered them. Perhaps, they were afraid he would be linked with her HIV status. Or they knew he was associating with us to underline his rebellion.

The Githinjis were an old farming family. The father, Charles had chosen to go into religion and was now the very charismatic leader of the Church in tiny Kikambala. He drew his flock from both the rich and the poor of the area. His wife, Perris, ran the women’s groups, visiting the sick and teaching the bible. They owned a farm which was bordered by the ocean. Their older son, Sean, ran the farm while advocating for Ocean conservation and ignoring his parents’ religious faith. Their younger son, Drew, ran an angling club for tourists and the wealthier locals, completely defying his older brother’s idealistic efforts and supporting his parents’ religion to a fanatic degree. Their daughter, Michelle just ran away from home as soon as she sat her GCE A levels. She became a doctor later.

Well, following my mum’s “diagnosis” with AIDS, things got positively harder for my mother and me. Desperate one Saturday morning, I decided not to attend my Saturday classes at school, and went into the village in search of our landlord who had been kind to us earlier. He was an old Arab businessman with a big heart. When I found him, he thought I was asking him for a handout. I told him I wasn’t and instead asked him to give me a job that I could do in one day and get food for my mother. That surprised him, and I suppose made him respect me.

I spent that Saturday painting rooms in his Swahili houses. Thank a deity that I had spent some time working as a volunteer the previous year and had acquired some skills in painting. My work was good enough for the old man to offer to place me on a permanent ‘contract’ for weekends. He also ‘recommended’ me to his friends.

Not long after this I made the acquaintance of a bunch of teens when I drifted to the soccer pitch to keep myself from crying at the idea of my mother dying and leaving me all alone. They were all boys older than me by 3 or 4 years, and amused that a girl could kick a ball good, never mind that most of the skill and energy behind that first kick was pure fear and anger. I became good friends with four of them.

I looked for extra jobs and shared them with the four. Katana, Ouma, Mbae and Kaingu. The deal was that they would give me a cut off all their payments as long as I was the one who got them the jobs. We washed carpets, cleaned cars, did laundry and painted more houses. And we all used Marijuana.

I paid the rent, bought my mum the protein foods her doctor recommended, and made it to school everyday. I wasn’t doing very well in school. In fact I was failing all my subjects except Physics and English. I was mostly too tired to concentrate on the studies. I was scared that my mother would die, and I hid behind my little power ride with the gang.

My mother had questions. Lots of them. Her little girl was coming home late, disappearing on weekends and sometimes in the middle of the night, and more than once she accused me of using drugs and whoring myself. I was using drugs, but in my head I measured my power on the control I had over the boys without having to drop my panties.

I was a jaywalker. Doing it more for the thrill than to cross the road. The more dangerous my thrill walk was, the easier it was for me to deal with everyday.

I might have gone all out into crime. I don’t know. Sean figured out early enough what I was up to. He kept an eye on me and when I was arrested late one night coming home from a ‘meeting’, with drugs on my person, the boys contacted him. I didn’t go to court. He bribed the Officer in charge of the station and I went home. Then he got the boys together and arranged for ‘scholarships’ at County boarding schools, leaving me without a gang to run.

Sean made a complete turn around from his usual horny groping when my mum came home from hospital. I was hurt when he seemed to have lost all interest in me, but I was soon busy with other things. Sean had used his ‘grown-up’ status to get me into intensive psychological therapy with an organization that rivaled his father’s church and to keep me in school. He got my mum on a free treatment program with the same organization.

Then he went out to sea on an underwater photography expedition and got himself killed.

My mother, however, didn’t die on me. In fact, she was not even HIV-positive although her illness and the way people treated her, taught me a lot about how HIV positive people should definitely not be treated. She got better and went to work at the NGO that had offered her treatment and support. I passed my High school finals. Just passed. Well, I got an A in English and a C+ in Physics.

I am going on 26 now. I still revert to my jaywalking once in a while, without the drugs and in a less organized manner. But today, I think about the situations that many young people find themselves in. I am alive and perhaps just slightly less scarred, but not because of any smartness on my part. I just slipped past the danger zones when the devil was distracted.