Let me reframe that question. What is the sub-total of Lupus, baking and care? The answer is woven into my life, tied to everything that I own and care for.
My name is Dorcas, I am a journalist, a kick-ass self-taught baker and yes, I have Lupus.
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First, I must admit that there is a level of humility that Lupus induces in those it takes on, it is difficult not to notice the transformation. My experience with the disease has been one of raw insidious pain. While I had the been ailing for a couple of years, I did not know it until 2014. Lupus changed the arrangement in my life’s musical routine. The most it took away from me, was the ability to depend on myself to carry out daily tasks like just walking to the toilet, getting up from the bed and being able to lift my son for a cheer. Those things, the normal ones that dignify our lives, take note of them and be grateful. We often forget the role of gratefulness in our daily chase.
You see, Lupus is an autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. So you are walking around and there is a war within you, attacking the very elements of your body that complete your being. When I talk of insidious pain, I know it because Lupus exemplifies it. With it, I saw my journalistic career ebb away, it is like watching a part of your body fall and you cannot even muster enough energy to give it a decent burial. That hurt. Deeply.
I got sick in 2013. I knew it was Lupus I was suffering from in 2015. 3 years of groping in the dark, taking a concoction of medication to treat all manner of ailments ranging from cancer, depression and even syphilis. I was emotionally drained. I refuse to believe that happens more often then we care to know. How you just get slapped with a diagnosis that isn’t the right one and get treated for it for months is beyond me.
2014, Lupus and Cake
I got from the hospital after surviving a minor stroke. My sons birthday was 2 days away and, like any child that age, would keep reminding us that he was turning 6 years old. The little guy had no idea that we had depleted all our cash paying hospital bills. Never mind that this was still a time of darkness in my illness. I still was not sure what I was treating. The concoction of drugs made the situation worse thus leading to the stroke.
I was bedridden.
With my whole right side paralyzed I looked at my husband then to my son who was oblivious of what was happening, the little expectant eyes full of life gave me fuel to fight whatever it is that was ailing me till my last breath. I was struggling to talk as I was learning how to speak again because my speech had been affected.
My husband was trying to explain to our son that it would be difficult to have a birthday party. The boy looked at him and just requested, for one thing, a cake. We could not even afford it at the time. I struggled and managed to stop my husband and with fresh determination, I told him;
Kyle would get his birthday cake!
How? I could see the questions in my husband’s eyes before his gaze softened and confirmed yes there was going to be a birthday cake. He had to play in my team. I remember going to my facebook page then something told me, why not just bake the damn cake? My husband was not buying this because he had to take care of me round the clock. He could hardly manage (even though the guy can whip up a proper chocolate cake). I told him, I would do it.
He managed a feeble yes and there begun the chase for the ingredients. There is something about that moment, that elevated determination to get something so dear to me done that I take very seriously now.
Determination is the fuel that you need to ignite the fire and get things done.
I even told him making the cake would help me exercise now that we were unable to pay for physiotherapy. We agreed, a chocolate cake would bring some much-needed cheer in a house that had been through one year of pure hell.
Little things will make your baking experience worth it. Those little things were missing in my kitchen cabinet. There was no money either. When my husband left the following morning and came home with all the missing ingredients, I couldn’t even ask where he got the money from. Some of these things you just accept them as gifts from heaven.
Poverty in a time of sickness is nothing I would wish on anyone. Not when everyone assumes all is well, after all, you are living in a good house, with a decent family and a decent life. Well, I know today that there is a thin line between a decent life and poverty when sickness knocks at your door.
Now, the ball was in my court, I scoured through my old recipes for a chocolate cake and found one that was simple and I thought I could hack it. All along my husband looked and kept asking if I was ok and if I would do it or I should allow him to take over. I was determined to bake against all odds.
I started mixing the batter with my left hand and though the process was tedious and sheer agony I whipped on. Through the repetitive motions and the excruciating pain, I wept. It took me 3 hours to complete a simple task that should take me 30 min. Without a mixer, I was using a balloon hand whisk and talking to myself, affirming that this cake was going to be baked.
There was this image of my son that kept playing in my mind. I would see the smile and the laughter, we needed that in the house, we needed laughter, we needed to forget, we needed just a moment of joy and that is what kept me going. My husband was by my side the whole of that time, wiping the sweat, wiping the tears, trying to take over but I resisted. I eventually managed to make the batter and pop the cake in the oven. God was on my side. It went well.
Now the hard process of decorating was awaiting me. My son loved Power Rangers at the time.
An idea came to me to incorporate them into the cake. Since I could not use my right hand as a result of the stroke, I could not mould the characters. I remembered there was a cake house at the nearby shopping centre in Buruburu and decided I could go and ask if I could get an edible picture of the Power Rangers.
The cake house was just 5-minute walk away from where I was, yet here I was I could hardly walk without assistance. It took me one hour to get there and I thank God I got to meet the owner of Joybells cake-house, Beatrice Muteru. Sometimes, I think the spirit leads you to people it knows will nurture you well. That meeting ended up igniting one of the most inspiring relationships. There were striking similarities in our journies. She started to bake as a form of therapy. That spoke to me on a personal level. I got my picture for free. I took home loads of inspirations.
With all the fatigue, my husband ended up helping me decorate the cake. With my hand shaking, I made the cream, covered the cake and unsteadily wrote the birthday message.
I still recall the look on my sons face when he came from school. The hug that he offered me and the happy calls to his friends proudly telling them that I had baked him a cake made me so glad.
The effort was not in vain.
What started as a mothers gift to a son has now transformed into a business. I bake to heal. I bake to make some money. I bake because I can.
Lessons from Lupus.
Love is precious. When you find it, when you find the one who makes your heart sing through health and sickness, cherish them. My husband has taught me what it means to be loved and cherished in health and sickness. He has been there both physically and emotionally. I know now and I do not take it for granted that he does this for me. I have friends in my Lupus support groups who have lost spouses because they fell ill. Lupus is not an easy disease. Least of all, the psychotic moments are not the kind that you get prepared to take on. I have had my moments of those. It is what Lupus does to your body.
Support Systems Matter – To manage a chronic disease comes with many whys and whats. The Lupus support group is very active on Whatsapp and Telegram. We meet too. It is understood within our circle that we cannot always attend meetings. Lupus saps your energy.
Sometimes we help each other with medication. I can see you frown and ask, what? Yes. When mine run out and I have no money to replenish the supply I ask who can help me. Managing Lupus is expensive. It doesn’t help that there is no much awareness around it.
Learn how to Live with Loneliness- When you have lived a life so full of hope and vigour, then all of a sudden disease pulls you down, that can be shuttering. But it is the lonely conversations that can wear you out. There is so much to ask, so much to complain about. I have learned to occupy my mind with constructive conversations. In my points of weakness, I know I am not too weak to do something like have a chat with a friend, bake no matter how long it takes, just be. That way, my moments of loneliness do not consume me.
Now that you know my story, agitate for a better healthcare system that facilitates and supports individuals in their healing by providing affordable services.