I Don’t Want To Die

Those are not words I often think about. Matter of fact, they are not words I think about at all. When I wake up in the morning, a billion and one things run through my mind including tomorrow because I never for one moment think I am not going to make it to tomorrow. I am that confident that my tomorrow is promised because God got me.

On the 10th of May I had plans; having a ME day kind of plans up in London- attend the Emerald Street Literary festival, see Wonder Woman, take in the Balenciaga exhibition, have pancakes and mimosas, do the whole London thing. The outfit, the hair, the makeup…everything was planned to a T and there was no question I was going to have a fabulous day of it.

On the 9th of May at about 10:30am, Life happened and, as I knew it, changed. I don’t want to die, especially not today, I have a movie to watch and an exhibition to see, a literally festival to attend. I want to eat pancakes! I have an outfit to wear… I have books to read and write, I have friends to see and catch up with. I have things to do. All these thoughts were running through my head as my ambulance made its hasty way to the hospital, sirens blazing.

In my unconscious haze, my life passed like a snap shot before my eyes and I wanted it to stop and stay with me because dear Lord, I don’t want to die.

That morning on the 9th of May, I had a slice of banana bread and diet coke for breakfast, because sometimes you just do these things indulgently, at about 10am I had the weirdest stomach ache that made me sick but it felt like a different kind of sickness, odd and getting worse with each sick. It quickly escalated to disorientation and then slurring of words before eventual pass out. At this time my dear friend who was with me the whole time called the ambulance and was able to help me talk- nothing can beat the comfort of having someone know you be there for you in your most vulnerable moment. I am forever grateful for these friendships and I have a few of them in my life. The ambulance came in under ten minutes and I was taken to the hospital. Upon examination, the doctor explained I might have had a stroke and I was then cognisant enough to tell him I thought he was wrong and he found some humour in that, following an MRI scan the stroke was ruled out, as was a bunch of other things thank heavens.

Thrombotic Thrombocytopenic Pupura (T.T.P) – an auto immune disease that affects the blood. I’d developed an antibody that was attacking another antibody, counteracting each other and throwing my whole body in confusion- you could say there was a war going on in there. This attacks was on ADAMTS13 a key size regulator for the Von Willebrand factor whose primary function is binding to other proteins to aid in the formation of platelets whose function is to make the blood clot to stop bleeding etc. As my ADAMTS13 was being attacked it could not cut up the vWF hence no platelets which means the blood coagulates in one glob without means of being effective as platelets where they are dispersed to different functions in the body. The baseline number of platelets one should have in the body is between 150 and 450. My count was 7.

I don’t want to die.

The doctors and nurses were swift and decisive and they kept me informed of everything that was being done to me and also being a source of comfort to my family and friends. I was admitted to the ICU, fitted with a catheter- possibly the most painful process, and immediately given a blood transfusion and then plasma exchange of about 30 bags of donor plasma to kick start my platelets into multiplication. Those early days were the bleakest, there wasn’t a promise I didn’t make to God if only he would save my life-

“you want to make God laugh, tell him all your plans”

He got an earful of them. After one night in the ICU and I responded to the plasma exchange I was moved to a ward for further care and exchange. For two weeks and three days, I was a patient of the Gordon Smith Ward at St George’s Hospital in Tooting, being bathed by the nurses, fed by the carers, looked after by the charities, and prayed for by the chaplains. I received near enough 200 bags of donor plasma, to all the donors whose plasma now runs in my body my thank you is pittance but I thank you from the bottom of my now healed heart, I sincerely thank you.

The Amazing NHS

I have never taken the NHS for granted but even more so now, I never ever will. Healthcare is the most fundamental and basic care that every human being should have a right to. It is not a privilege. My first encounter with the NHS was when I was about 25. I’d gone into the doctor complaining of pains in my abdomen, the doctor who examined me wanted to admit me right away because I had cystitis that did not let me even stand up straight, but I told him I would have to come back the next day because I was having my cable fixed the next day and I had been waiting for this appointment for six months- I’ve been young and dumb too many times to count when it comes to my health. The doctor kindly gave me his number and made me promise to come in as soon as the cable appointment was done but if the pain got any worse as well to call him. The next day at about 10am, cable guy was fixing the cable whilst I was doubled over in pain, and that moment an ambulance was pulling up outside because the doctor has preempted that I would be in need of assistance to get me to the hospital on time, and sent the ambulance for me. My neighbour made sure the cable was fixed. In the same vein, the doctors and nurses and experts of St George’s couldn’t do enough for me, the round the clock care, the information, the absolute dedication to my well being; when I asked when I would be going home, they told me they would keep me as long as they need to. I thought about those news stories, like scarcity of beds, the strain of the service etc. but I was a patient in their care and care was given exceedingly from the ward to the day unit and everything in between; from food to comfort and the other things that help a patient not feel even more helpless because I was at the mercy of my health and not at all in any control. The NHS saved my life and I couldn’t be more thankful.

The funny thing is, I can pin point the moment this all started, about three weeks ago I’d developed an ache in my right foot that moved to my left and came with identical bruised on the both feet, it hurt to walk but I put it down to normal pain and the fact that Pisces rule the feet so any ailment would often start from there and would be fine… I gave the doctor some lols with that one; Pisces rule the feet you know. But I ignored the pain and just went about like normal, I didn’t even notice when I stopped feeling the pain- if you feel something off in your body I beg of you have it checked out, no matter how trivial. Thankfully, the T.T.P I have is “acquired”, when the doctor told me that all I could think of was, like caviar, I actually said that to her and she laughed. I don’t like caviar anyway. It is not hereditary so my wonderful family, whom I love to absolute pieces, who were there for me and with me, are well and it will stay that way. I am out of hospital and intend to stay out. Whilst it’s a disease that I will have to monitor and live with, I know where to go from here and the things that need to be done. A lifestyle change; because everything about the body is mostly about what you put, or don’t in some cases, in it, the rest is chance.

24 hours is a long time to be had in the day when there is nothing to do but wake up, eat, sleep, be bed ridden to treatment, etc. I spent the time thinking about things I’d done and was yet to do- I wrote a book, I want to write more, I want Ava Duvernay to produce the TV series based on my books- listen I am a girl with dreams. I have a best friend I’ve never met but plan to someday, we talk everyday almost after meeting via email at work. I want to see the world in all its beauty, to be in this world and bring about World Peace in some way… everyday I was in hospital I just kept thinking to myself, I don’t want to die. And so I made a promise to God that if he got me through this, there will be a lot of living to do. Cliché right? But clichés are good for a time and reason and if this isn’t one of those. That picture of me was taken on the 11th of May in Burano, Venice, by a friend who caught me unawares, flower in my hair, full laugh and connected even with my mobile phone in hand; me in a nutshell. I don’t remember what exactly made me laugh so full but I love everything about this moment. I want my life to be this moment as much as humanly possible because you know what, I want to live for moments like these. It’s not everyday we get a second shot at life, a chance I probably don’t deserve, but for some reason God has given me this, the least I can do, is LIVE. My father passed away nearly two years ago now, and I am not loathed that I don’t get to see him again just yet, much as I miss him, but I am not ready to, not for a long time. I know he is okay with that.

I don’t want to die, I have too much living to do.