Over the weekend, I read the NYT article – Successful and Schizophrenic. It blew me away. The author, Elyn Saks articulated some things I have felt and believe, when it comes to living and dealing with a medical condition. But this line stood out for me – “What I refused to accept was my prognosis.” For me, it was like this lady is not making sense, she is making FAITH. Now I don’t know if she is a Christian, Muslim or Buddhist, and as far as I am concerned, that does not matter. I simply could connect with her mindset to refuse the idea of living with a death sentence and accept what the doctors said as final. As a Christian and one who has heard about the power of faith since I was a teenager, it reawakened something in me. Something that has always been there but I sometimes forget when the situation overwhelms me and fear takes over. In the last few months, that has been me. Faith is solid like a rock one minute and the next, as soon as the doctors give me an update, I crumble for a few days before rediscovering my mojo. Doubt has had sex with me so many times since June, I no longer count the minutes the orgasms last for. I know I am supposed to be strong and all the time say my faith is strong. Well, I have news for all you holy rollers – I get scared and sometimes, I shit myself, of course, speaking metaphorically. No visuals please!
The article was honest and simple, with no bullshit marketing, it encouraged me because in so many ways because I know what it is to live with a prognosis you cannot control or determine the outcome and live from the day to day, knowing you could go back to the hospital and they will tell you what you have been afraid of. For a long time now, I have not blogged, not because I have nothing to say – check my Twitter Timeline or Facebook page, I have a lot to say but when it was time to articulate this particular season of life I am in, it has been hard. I start thinking about what I want to write and rather than write, tears flow. I write in my journals but they end up being prayers. I have other content I could easily post but I wanted to get this out of my system and promised myself that until I do, I won’t post other items, if not, they will become an excuse not to actualise what I am feeling. Of course, this has been in addition to other commitments and the fact that I now pace myself in order to better manage my energy levels. But one thing has been certain from the get go, the title would be – Life, Lemon and Lemonade– and I was going to make a series of it in 2013.
July last year, I blogged about Falling In Love My Pain. Looking back, I should have called it, Falling in Love with My Pain While It Is Still Mild because ‘ish’ was about to unfold. By mid-august, I was a shadow of myself. Physically, emotionally, mentally and spiritually, I was hanging on by a thread. It was at this point that I said enough. On 15 August or there about, if memory serves me well, I woke up in excruciating pain. It was past midnight and this pain I recognised because it had been like this for two weeks and each night progressively got worse. But this particular night was different. I knew what it meant. It was over and the decision I did not want to make had been made for me. My heart beat was faster than usual, while that was playing out, my insides and this is the best way I can describe it, was all knotted like someone had taken two separate ropes and made a knot from it and then placed them inside me, which disrupted my body’s ability to function like yours would in its normal state.
Why was this happening? In July, I had an episode of acute renal rejection – When your body rejects an organ, you got via way of a transplant. They say this happens in some people and it was happening to me. Not what I had planned on January 1, 2012 but come middle of the year, life was unfolding and like a tidal wave, I had no control over it. Change was on cruise control and I was simply a passenger holding on for dear life and hoping for the best. Why was it happening, a number of factors contributed. Some, the doctors have been unable to explain because they just don’t know. Where I played a role, I am doing better with it and that is all I will say on that. Lesson – your self-care is important. If you are on a routine, stick to it, do what the doctors say and know you have done your part. When your self-care is in crisis like mine sometimes gets into trouble, ask for help. Really, ask for help even if it means someone else has to clean you up and feed you and help you with your medication. It will save your life. But I best stop with the preaching and keep writing…
Where was I? Yes, the pain…I had felt this pain when I was 16 and it simply means my body is not breaking down food or getting rid of anything. Hence, I cannot eat or drink and the fact (in my best medical knowledge, will try to break this down) that I am not getting rid of the urea in my body means I have exceptionally high urea levels. Hence, my creatinine, which is what is used to measure your kidney function, is in the high stratosphere region. In simple terms, the lower the better, the higher, hell is at hand and what that means is renal failure. No buts, no ifs, no what is wrong. I know what is wrong. The jig is up! Mine was 500 on this particular morning, high as shit and that puts me in the red zone. At least, between 190 and 200 is a safe region for me, I believe. At 500, time to start praying sub-machine gun prayer aka “rakaka booooom!!!!!” the kind that shakes your neighbourhood.
I was exceptionally weak and could only sit up straight for 10 minutes or less at any given time, if I was not sitting or flat on my stomach, I was in the bathroom trying to be sick due to being uncomfortable and feeling bloated and nauseous. And when you start being sick like I was, that is another red flag. When I succeeded in throwing up, it was hell because it took everything to be sick. So, I packed a bag because when you know the drill, no one needs to tell you anything – In tears, I said a little prayer but it was different. It was not the prayer of Lord help me. It was simple and I remember my words so clearly – “Lord if this is how it ends. Take me. It is okay now. No more strength to do this and no more strength to fight. I am tired. Whatever you do, make sure my mother’s heart heals. That is all I ask of you and let her know that these last 16 years have been worth it. Let her be able to move on” I didn’t say one for my father or my siblings. It wasn’t because I didn’t or don’t love them. Everyone would have been affected if my prayers had been answered in that moment. Looking back, thank heavens it wasn’t. But I knew my mum would have been affected and in a bad way because being a mother is not a joke and being the mother of a sick child from teenage hood to adulthood and one you still have to care for when the chips are down and having to do all of that, on your own is not easy. My mum and I have our moments and I mean, serious moments but there is one thing I will say anytime, any day and any where. If it had not been for God, faith and my mother, I would have been dead a long time ago. She is my extra legs when I cannot walk. My hands when I cannot do anything. My chef, dry cleaner, you name it…she does all of this and much more…
I took myself and my bag and we went to the A&E. It had become my second home since July 1. Getting there, I was examined but the A&E at that particular time was not best positioned to look after me as there was an actual cross-wire with a hospital appointment scheduled with the lead renal consultant for me. Someone was looking out for me because that was my saving grace. So, I got the fast track I so needed and at the end of that consultation, his words were “You know what this means right, you have renal failure.” It took everything in me to not fall down and roll and cry. I was shaking because the visual of a dialysis machine came up and I did not want to be back on it ever again. It was too much to handle. I have a life now and that machine is not part of it and will never be part of it. And that right there is my prayer everyday. However, it dawned on the consultant that there was a possibility I was vomiting and in pain due to a negative reaction to the anti-rejection treatments I had been given at the end of July. You see, they had pumped me with steroids to try and save what was left of my graft and maintain some functionality. It was a HIGH dose and that stuff drives you crazy because it drove me nuts. As soon as that ‘ish’ went into me intravenously, my sense of taste diminished and when I ate or drank water, everything had a metallic taste to it. And to make matters worse, my breath, phew! let us just say kissing would have been a real challenge if there was a significant other. At the same time I became very lethargic, one of the downsides when you have reduced kidney functionality. The tiredness was indescribable and so was the breathlessness. I still get that way sometimes but more on that later…
That was the first prognosis of the day. One test was about to confirm it and so my bloods for that morning was rushed off to the lab as urgent. I had to sit about for a few hours to get the test back. In the meantime, I am crying, shaking and simply overwhelmed. I could not even pray because the words did not come. My thoughts were all over the place as I tried to imagine what my life would be like – how was I going to do all that I have dreams to do with this unplanned change and disruption. Remember up until now, I was untouchable and doing my thing. And then the results came back and calmness came over me as they said “Go home and come back next week for further test.” That test result had bought me some time. My levels had remained the same. It was indeed the steroid treatment making me sick. So, they gave me a new medication to counteract its effect.
In all of this, one thing remains, I still have a reduced kidney function. This means the doctors have a time frame when they think they would have to put me back on dialysis but until then and in their books, they have to sustain me with medication. While I know the doctors have to do what they have to do, like Elyn Saks, I refuse to accept my prognosis. Call me crazy, say what you may but I am fully aware that I don’t make sense right now. I am making FAITH and in time, my body, spirit and soul would have to follow my command and thinking and fight with me, so we can stay well for as long as possible. If you had 18 months before you die, what would you do with it? I ask because that is the time frame I have been given to prepare myself for the worst outcome or find a donor. And you want to hear a joke, I had a prospective donor. But after two weeks of having this discussion, we find out my prospective donor has recently developed a health challenge and for the next year and more needs to focus on getting well. They have no business donating anything to anyone right now even if they wanted to. Talk about irony right! So I am back to what I know best, prayer, better self-care, pacing myself and staying positive. I would like to add strong but I am not strong everyday. Days I go to the hospital for my check up, I fret about what my results could be until I get home and don’t get that dreaded phone call. Nights when I wake up in sweat, I fret. Days when I am exceptionally tired and in pain, I fret.
Then I look at my skin, especially my face, which as of June last year, I could count the number of spots I had due to a woman’s monthly cycle but now, my face looks like it has peanut butter rubbed all over it and someone decided to add dark raisins on it. Be kind with your visualisation please! I am breaking out and it is not your average break out. I have to wash my face religiously, keep my hands clean because it itches and hurts too. The dermatologist is currently trying to find the best skin care solution that won’t cause me any further harm because as with all treatments, this is another side effect of the current course of treatment I am on. I console myself that this is better than a dialysis machine and it is but I am vain. That much I will be honest about. I think about it, I stand in front of the mirror and look at myself and I don’t recognise the person starring at me. So I have to dig deep into that love I have always reserved myself to get over what I currently look like and get on with it because this too shall pass. In the words of my sister, “if he is the one for you” (as we talked about relationships as things unfolded, I have to take this into account where relationships are concerned. There is no need dancing around it. Best, I am honest with myself) “he will see past your face and this (referring to the situation at hand).” Don’t you just love sisters, who love you and lie to you like they didn’t notice your fart really stinks but tell you it is natural, let it out. But she has a point because as clichéd as it sounds, where there is life, there is hope. I have pictures to remind me of my near spotless face and that is cool and heaven knows, I am grateful to Mac cosmetics. They have made more money off me recently than all of last year combined.
What has been beautiful about this, is that lately, I find I am more relaxed than I was back in July right up until November. Though I have days as previously noted when I fret and I am angry, I take my time to do things now than I was doing last year. It has taken some time to adjust and I am still adjusting but now, when I want to sleep because I am tired, I interpret it as that rather than laziness like I used to. It has also meant time to take a look at me and do a lot of thinking while dealing with this and I will be the first to admit I have had to do a whole lot of mental repositioning and a paradigm shift is still taking place. I think there is something about realising your time has all of a sudden become high commodity, it knocks sense into you and in the last few months, I have come to understand that the more value I place on myself without seeking external affirmation or the confirmation of any man/woman, the more I love me, do what I need to do without asking for permission, ask for what is rightfully mine and say no to that which my spirit and soul has had enough of without apologising. Cut what I need to cut and untie all that needs to be untied…yet be amiable without bitterness and learning to say goodbye without the bile. Things I have always been aware of but there is a new and heightened awareness to value myself more because if it had ended in August, and I had a chance to look back, what would I do differently? While I have all these physical changes taking place, it is the one taking place inside me that gives me hope and strength to face each day. Truth be told, there are days when I take my meds and I don’t want to wake up. Times when the thought of it all just takes over and I wonder away into a space that is all mine but come back to my body and knock some sense into it and say I am still here. Let us try and make it work. I have this new love for me. Not narcissism but just knowing there will only ever be one Belinda and I best make the most of it. I take each day as it comes and I find I operate better this way. But make no mistake I still have my dreams and goals mapped out and I am holding on to them and working towards them because I have found this works for me and as alluded to by Elyn Saks, when you have something to work towards and live for, that energises you because you see worth in you beyond the medical condition tag attached to you. This is where positive thinking comes into play. See the best outcome not the worst because your mind speaks to your body and if you can win the battle in your mind, you stand a better chance. So, yes I am doing a whole lot of positive thinking about this.
18 months might seem like a long time but for me, it is and it isn’t because it is not guaranteed. And here it is, dialysis reduces your quality of life and the years you have to live. Yes, it does that too unless you find that donor quick. As a teenager on dialysis, I was told to expect to fight along until late 30s and early 40s if lucky. However true that would have been, I have no idea because my transplant has lasted 11 years. In fact January 23 was my 11th anniversary and despite the circumstances, my best anniversary because I was not on a dialysis machine. I danced on the day, just me, myself and I in front of a mirror and we danced! But this I know for sure, that 2012 kicked my butt and forced me to pray like never before…from emergency bullet prayers to the kind that one could categorise as a missile defence systems…I said all of them. But at the same time, it made me ask questions about life, what success is and why we are here? Questions we ask ourselves at different points in life… I don’t have answers for everything but this much I know, I refuse to accept the prognosis. I am not burying my head in the sand. No! That is far from it. I am fully aware of what is going on in my body and the reality before me but like I said I am the crazy kind and have no plans to make sense any more. We are going to make faith and take it one day at a time and trust that each day, as it comes and whatever comes, we will deal with it. For now, taking today as it comes and loving that I can do that because when life gives you melons, make lemonade with a hint of ginger for that zinger taste and feeling!
This post is the first in a series titled – Life, Lemons and Lemonade. Looks forward to your thoughts. Thank you!
