Monthly Archives: August 2013

Is There A Point To All This

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When it comes to this blog and this part of my life I am very optimistic and confident. For some reason I am certain that there is a purpose to this journey and my illness is an integral part of it. It is such a strong belief that nothing can convince me that I am wrong. But that is as far as this blog and this illness are concerned.
In my ‘other life’ I have so much self-doubt, so much sadness/unhappiness, pain,anger, hurt. How I can be this person and the other baffles even me. How I can have so many issues:

Weight issues
Anger issues
Relationship/commitment issues
Work issues
Financial issues

Why am I so incapable of being in control like a lot of ladies I see around me? People I started years earlier than have things I cannot even dream of. People who could not hold a candle to me in terms of academics are ‘masters of the universe’. And it’s not for my lack of trying…. I wish that I saw one aspect of my life that I was certain things were going smoothly in, but there’s none. It is Joie who is the single mother with a baby daddy who doesn’t give a shit, Joie who is overweight and ballooning, Joie who is unemployed and unemployable (apparently), Joie who is always broke and has no financial base, Joie who gets propositioned or harassed by married, unavailable or unworthy men. And Joie who is HIV+.

Lately, it has bothered me more than before especially in the last few months since I left my job. Truth is that my work and the income therefrom, is my life. I define myself by the work I put out. I take my work very seriously, and consider my efforts a labour of love. The money I earn, and the things they can do for me are very important ways for me to chart my worth, keep score. God knows all this, so why have I been so unlucky with work?

I don’t dare complain because ‘they’ will say ‘why did you leave your job?’ But what was I expected to do? Wake up every morning thinking of an excuse to avoid work, go to the office and do everything but the job I was supposed to be doing? Watch as people were cheated and pushed aside? Not to mention the insults and financial discrepancies.

I work hard but I’ve gotten weird jobs all my life. I’ve never earned a good salary- by any standards. As a matter of fact, I’ve only experienced regular salary payment on 2 jobs. Bosses who had no morals or scruples, etc. People say ‘it’s the same everywhere’, then how do you live with yourself everyday?

I guess I feel blue because things have been bad. So bad that I am anxious about my daughter’s school fees for next term. So bad that I can’t afford my immunity-booster tablets.

On this blog I never doubt that God exists, that He has a plan for me, and that I will see it through. So I am bringing this problems here to share because in my other life I doubt and I question and I see no future anymore.

Giving It All Up ( To Him)

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One of the things I dread most about going for my treatment in LUTH is waking up really early and the delay when I finally get there. I actually have to get there early to wait 3 or so hours to be one of the first people to be attended to. And when you realise that being attended to means going from one room to the other, getting cards filled, collecting forms, filling prescriptions and talking to various people, you will begin to appreciate better the sense of dread any approaching appointment gives me

Having my daughter has been the most monumental occurrence in my life. By far the most monumental. I never knew that you can love someone a 100% more than you love yourself. And be ecstatic about it. ( Well except for that one time when I fried 2 pieces of chicken for her but gave her only one… and when I hid the chocolates bar from her and said it was finished. Those times the love was shared 50-50 between us. But I digress.)  Anyone who follows this blog would know that one of my greatest fears has been that she may have inherited the HIV infection. Infact about a year ago, I wrote about how scared I was for her because she had been falling ill at an alarming rate, had boils breaking out all over, urinary tract infections and so on. I was particularly worried because I had not done the final confirmation tests that determined if she was HIV+ or HIV-, and I was scared that the former could be the reason she was always falling ill. At the same time, because of my work and accommodation situation I could not bring her over to do the necessary tests, so I was always on edge over her matter. It is one thing to live with HIV as an adult whose choices or lack thereof have landed you with the infection, but it is another excruciating, miserable thing to have to watch your innocent, helpless child, the love of your life live with the illness, knowing that you are the cause of that hurt in his/ her life, and that you cannot do anything permanent about it.

There is another part to this story though. I am a strong believer in the existence of God, maybe not the way a lot of other people do but a believer nonetheless; I would be a fool not to because I have had many things happen in my life that I cannot explain and I have had many bad situations turn around for good without my input. For several months both while I was pregnant and after I gave birth I prayed to God that this baby would not be infected. I begged and cried and pleaded. And to a large extent I would say concerning this baby I have had a certain assurance that He is in control. My assurance comes from the several miracles surrounding my pregnancy and her birth: the pregnancy survived bleeding, a fibroid,  anxiety attacks,  a quack doctor, drugs that could have caused serious abnormalities, and the birth defied all preparations for a CS by going into labour on the day of the operation. (You can read more about that in the previous blog if you haven’t already.) Even after her birth things began to happen that showed me that the life of this child was firmly held by God. And for me that is when I know God has spoken.

Anyway, this was my state of mind when I brought my daughter over to Lagos for the final tests. I was quite unhappy and dreading the visit to the hospital the  early wake-up time, the long wait, the lengthy explanations about why she had not come in 3 years, and the results. But I knew it had to be done. Just to reiterate, having HIV is not a big deal- scratch that- should not be a big deal. There are lots of illnesses for which people take drugs daily:hypertension, diabetes, and so on. The problem is that we are still treating HIV like it is special and restricting treatment to specific centres and times and as such creating a scarcity and stigma that should not be. This is what I do not want my daughter being saddled with. When I woke her up by 5am to have a bath and she cried, my heart broke. I was so sad that this would be what she had to do every month or so from now. We dressed up, however and left the house for LUTH by 5.45am.

It took at least 7 or 8 hours for the people at LUTH to find my daughter’s case note. Three years is a long time, you know. I took the opportunity to do my own test and consultation so I would not have to come back. By the time we went to see the pediatrician my daughter was cranky and hyperactive. The doctor as usual was professional and nice, and that is a lot considering that they have to work in a very tight and limited environment, when I told her about the illnesses my daughter had suffered she said they were not necessarily limited to people who are HIV+, nor were they a sign of the presence of the infection. She then sent me to do a HIV test for my daughter and come back with the result.

Waiting to get the test done took at least 2 hours. By then even the doctors had gone home. I was wondering how and when I would have to come back with my daughter for a follow-up consultation. I was so upset. Finally, one of my ‘people ‘ who came over to the lab and saw how angry I was made them take my daughter’s blood, then came the anxious wait for the results. During the wait I sat with several women who were discussing how they had contracted the infection from their men. It was a very interesting discussion that kept me interested and took my mind off my anxiety.

Finally the results were ready and instead of the lab guy to give me the slip he went and gave it to the counselor. That was when I ‘knew’. I mean if I needed to be counseled then the result was obvious was it not?  As I went towards the counselor’s office I found many of ‘my people’ in the corridor. They asked the lab technician if he had told me the result. Oh! It’s negative, he said. Relief, relief, relief. It WAS negative.

I write this story to encourage anyone out there thinking (a.) that something is impossible or (b.) that with the HIV diagnosis they have been given a death sentence in all spheres of life. If you believe in God, I will tell you from my own experience, just tell HIM what you want and let HIM decide how he will work it out. Christians like to say have faith; my own take on that is this- the faith that you muster to call on His name is enough. I do not believe God requires giant amounts of concentrated faith to do what He wants to do. I do not even think He needs our faith at all: the little you have is just necessary to show you, when the miracle finally happens, that it was indeed a miracle. I was not on proper medication for Prevention of Mother TO Child Transmission, I did not take the proper precautions to protect my child, instead I was even given drugs that could grievously harm both of us, but today she is healthy and free of the infection. If that is not a miracle, I do not know what is. So imagine what options are open to someone who took all the necessary measures and has the treatment locked down! You can marry, start a family and be healthy. There are people I have met with untraceable viral loads, several of them.  Do not despair, nothing is impossible, and with God EVERYTHING is possible. And this infection will soon be nothing.

If you do not believe in God, find it in yourself to believe in you. You were not born to be crushed underfoot by a problem. Find the essence of your life, what you are passionate about, and what you love to do and accentuate the positive. Say ‘YES’ to living a fulfilled life and you will be surprised how the answers will come out of the strangest places.

I am very, very, excited today. Very happy. My daughter can live her life independent of my mistakes. I am very grateful to God and I now understand when people say they do not know how to thank God. Jemima, Owi, MS, Asa, Sykik, Toinlicious,and everyone who has given me their support, pop something wherever you are in honour of this day. May all our individual joys be made complete and full.

 

Love, light and tambourines

Joie