Life is life at the moment... that's about all I can say at the moment!!

The New Fairy Tale

Life has become something of a fairy tale lately. It feels as if I am watching things in my life occur from some far off distance. Like part of me has been left on some harbor while the other part of me is floating on the deck of some ship that I did not intend to get on. Zora Neale Hurston wrote that “[s]hips at a distance have every man’s wish on board. For some they come in with the tide. For others they sail on the horizon, never out of sight, never landing until the Watcher turns his eyes away in resignation, his dreams mocked to death by Time. That is the life of men…. Women forget all those things they don’t want to remember, and remember everything they don’t want to forget. The dream is the truth. Then they act and do things accordingly.” I have been somewhat lost in the realms of both men and women, not knowing what it is that I actually want to remember and watching various ships bob up and down against the rigid line created by the horizon. I seem to be a mix of the male and the female, waiting for my “ship” to come in, at the same time trying to remember the things that make up who I am, desperately attempting the separate the dream from reality.

At this point, I really don’t know where I am in my life. I have all of these ideas rolling around in my head, and for some I have the means to get them off of the ground. But that fear of failure keeps me at bay. Not to mention that my credit is basically in the toilet since I’ve been sick. I can’t really fathom how to begin to deal with that aspect of my life. I have been trying to pray and pray but it seems that every word of every prayer is falling on deaf ears. I remember my grandfather always telling me that “God helps those that helps themselves!” And those words open the issue of whether I am “helping” myself to get out of all of these situations… am I helping myself get out of debt, am I being proactive about the whole transplant process, am I, at least, trying to get out of the depression ridden funk that I sometimes wallow in? The answer to most of those questions is a resounding: not so much! So, now I must find a way to help myself in each of these endeavors. I realized that it is not a good idea to actually stop seeing your therapist when you think you’ve been ‘cured’. I realized that there is no cure for depression and that one must really be proactive in your treatment, whether it involves therapy or taking anti-depressants. I have concluded that anti-depressants are not for me, but that I must keep seeing my therapist. I am still learning to tell people how I am feeling (thanks to my therapist) and yes, there are times when I literally am cannot see beyond the fog that has become my life, but she always finds a way to make me wake up and shake it off. I am learning to deal with things one at a time. The process is dealing with all of these things and not running away (and believe me there are many times when I wanted to tuck tail and run). In a sense, I can feel myself growing up… who would have thought that I would have to mature under these circumstances? I know that all of this is supposed to make me a tougher person, but I just see all of this as a means to keep my head above water. I am literally just trying to survive, to live to see my thirties, forties, fifties, and maybe even my sixties, to get my PhD and become a Spanish professor, to write a book, to own a business, to get married and have kids. Those are the things I want to achieve in my lifetime… but being a dialysis patient makes you realize how fragile life really is…

Stop and Go

I feel like life is moving in fast-forward/stop animation. I decided that I am going to start a not for profit organization with two of my best friends, and everything pertaining to that is moving along fairly quickly. But then there are the days that I have to wake up at 3:00 am, and that's when the stop animation kicks in. It's been a year and it seems that when I think that I am getting used to fact that I am on dialysis, that voice in the back of my mind breaks me. What broke me this time? Going to an information session sponsored by the National Kidney Foundation and the transplant center here in Memphis. And try as they might to stress the importance of transplantation, they merely succeed in scaring the hell out of dialysis patients. The have doctors put statistics on an overhead projector giving information about your expected lifespan after so many years after being on dialysis. Yes, it is something that I, as a dialysis patient, must know, but I don't want people to tell me that there is an increased risk of death for each year that I am on dialysis. That frustrates me because there are so many people who are waiting to receive organs, there are not nearly enough donors, and yet, they think that scaring people into the transplant will somehow save people's lives. It's funny because they never tell you how many people actually die as a result of waiting for a transplant...

I know people who have been on dialysis for over ten years and they are still functioning members of society... well some of them anyway. They have beaten some great odds, and continue to do so each day. I would love more than anything to have the strength that they have. My mom tells me everyday that I am one of the strongest people that she knows but I have never felt strong through this entire process... maybe I'll look back on all of this and see the strength in all of this... until then, I'll keep trying to exist in my fast-forward/stop animation realm.

Light, Love and Chaos

I have realized that I have come a long way since failing my first year of law school and being diagnosed with kidney disease and hepatitis C. And even though I have made a lot of progress in dealing with all of these things, I still have an inherent fear of failure, simply because I still have the wounds from the first major failure in my life. I can fail at relationships all day long, but when it comes to my career, I have little tolerance for failure. I have had to realize that all of my endeavors have not been ordained by God, and so there are times when I will fail miserably. What matters is how I pick myself up after that failure.

The failure from law school is still so fresh and raw for me. I was broken, physically, metally, emotionally. I had been sucked into some black hole filled with pure and utter chaos. I had no foundation beneath me. I was in some type suspended animation but I was awake. I was moving through shadows, everything in my life was a dark, murky and hazy gray. I was breathing, but the breaths were suffocating me at the same time. There was nothing. Soon time and space began to literally disappear as days and nights began to merge into one another. Time meant nothing. Darkness and chaos filled every pore of my body and began to emanate from within my being. Chaos seemed to rule me, guide my actions and reactions in life.

At times it felt like the darkeness washed over me in waves. I could feel the waves crashing against my body, knocking me down, dragging me under the forceful waves. Each time I make some progress towards the shore, rogue waves appeared and knocked the breath out of me, stopping me dead in my tracks. Not only did I have to fight my way to solid ground, I would have to fight against the force of the chaos the waves brought with them. I am at that point again in my life, but this time, it seems that I am better equipped to handle the rogue waves and the fact that I am still searcing for solid footing. It's as if God has lit the small light in the top on some distant lighthouse guiding me in the right direction, allowing me to walk along sandbars under the shining light of a full moon. The sky is lit beautifully, the lighthouse is guiding me on the right direction, and though the waves are chaotic and forcecul, I am at peace knowing that God is guiding my path.

In all that have gone and will go through, I have a strange sense of peace about life at the moment. I am making decisions that will help me and others being directly influenced by renal failure and dialysis. I am going into business with two people that I trust with my life. I know they will keep me on the right path and keep me focused. I am blessed to have such people in my life. I am blessed to know that God has been walking with me (and at sometimes has carried me through my darkest times). I am at peace with many things that are going on in my life...

Cool therapy session

So... I went to see my therapist today and I must say, I should have been going to see her all along! She makes me feel great about myself and every damn thing that is going on in my life, the good and the bad, the ups and the downs. She lets me know that no matter what, I am more than strong enough to do any and every thing that I have or will set my mind to. She adds to the encouragement that my my family gives me and she lets me know that it is more than ok to have bad days, to get upset with people or things that are going on in my life. She also lets me know that it is my duty to stand up for myself and make decisions (regarding relationships) that will benefit me. Overall, she lets me know that I should be happy no matter what, and that I deserve that happiness.

I can honestly say that I am doing things that I probably would have never done in the past. Like telling my sister off when she gets on my nerves, or having the backbone to get out of unhealthy relationships. She has helped me find a strength that I desperately needed.

But today's session was interesting though. After telling her that I have come into contact with other minority women who are battling chronic illnesses/diseases of some sort, she suggested that I should contact both the Tyra Banks Show and the Oprah Show. She suggested that I should attempt to get the message out about both dialysis and how young women are coping with such diseases and the transplant process. And after thinking about it for a little, I did it! I actually sent in e-mails to both shows. It was a little weird, but I know that, even though I am basically wishing on a star and silently praying to God that someone thinks it's a worthwhile topic, I am taking one of the first steps to getting the word out about dialysis, the transplant process, and day to day coping with renal disease, or any other terminal illness for that matter.

So, to anyone reading this, please pray that someone responds to those e-mails and that we can spread the word about renal failure, dialysis, and transplantation... maybe it'll even help me in actually getting a transplant!

questions

My name is Ebony Brown and I am a 26 year old dialysis patient in Memphis, TN. I am working on a book dealing with how people, mainly minorities, cope with terminal illnesses. I dialyze at a center that is about 90% minority (mainly African-American). I would like any imput that anyone would be willing to give me regarding their own dialysis experiences. Please send your responses to [B][U]e_l_brown2005@yahoo.com[/U][/B].

Some things I would like to know about anyone who submits information are:

1. Name and location (city and state is enough information).
2. Age and Sex
3. How long you have been on dialysis
4. What stage of kidney failure you are in
5. How has your life changed since becoming a kidney patient?
6. What are some of those major changes?
7. What are some ways that you are coping with kidney disease and/or dialysis?
8. How does your family/significant other contribute to the coping process?
9. What are some of the major setbacks that you have/are experiencing?
10. How efficient is your renal care team?
11. What other illnesses, if any, are you dealing with also?
12. How has this experience changed you as an individual?
13. How well have you adjusted to your renal diet, taking medications each day, the dialysis treatments themselves, and the side effects of the treatments?
14. Has kidney disease/dialysis affected your lifestyle? If so, how? If not, please explain why it has not.
15. What are some of your ultimate goals in life? Have they changed as a result of kidney disease/dialysis? If so, how and why?
16. Please give me any other information about your experience that you feel comfortable sharing with me and others.

*** The information that you share is freely given. I cannot guarantee that all information will make it into the book, but I will send messages to those that do. Please also note that no one will receive any funds for the information given. I am writing a book to help others, like me because it has been an ordeal finding people who want to openly talk about dialysis and kidney failure. I thank you in advance for your help and submissions!

What the hell...

Ok... I admit there are some people in my life who need a reality check (and I am speaking of one in particular) and I know that I promised to to waste any more energy on analyzing and disecting the relationship I have with him, but he did some shit last night that just made my mouth drop with the "no the fuck he didn't" look on my face!

He sent me a text message saying hi, which isn't unusual. He'll send one every few days. But he followed the "hi" up with a message basically asking me to give him some. He didn't ask how my day was, he didn't ask how I was doing, he didn't ask about anything pertaining to me or my life! He just asked to sleep with me! What is that about? We have not had an in depth conversation in over two weeks (and text messaging does not count as an in depth conversation in my book)! Yet, he thinks that it is acceptable to ask me that out of the blue! So I sent him a message back saying that he had the wrong person. All he said was "oh aight, I C." But he doesn't at all. I am sure that at some point I would have been ok with that, but that whole friends with benefits thing got really old really quickly! So, I nipped and tucked it. And I told him that we would just be friends, but I don't think he believed me. So, I added a few actions with that, like not hugging him... or rarely touching him for that matter! All of this has been going on for a while, and I thought that he got the message because he started messing around with someone else. Apparently, I was wrong!

The fact that he would even ask me that just lets me know that he lied. That all of the things that he told me when we first met was just that... a bunch of crap. I am nothing more than a piece of meat (maybe I really should become a vegetarian!). He has no respect for me or my feelings. I was nothing more than a plaything for him. And yes, it is partly my fault cause I fell for a lot of his charms (me being the naive, idealistic, and optimistic person that I am) and I let some things go on that I should not have (like sleeping with him in the first place). To tell the truth, I didn't think it would end up like this when we first met. He seemed so different, I mean he actually listened when I spoke, and we talked a lot. Those were wonderful days, and it let me know that yes, there are men out there who listen, who make you feel warm and gentle inside even when the world around you is steeped in utter chaos. There are a lot of good qualities about him that I will look for in the next relationship that I have. But, in the end, he proved me wrong. He proved that no matter what you look for and find, that men are the same. I don't think he'll ever know how much he let me down last night. In the end, I guess it was time for me to take off my rose colored glasses and see him for who and what he really is.

And to think... all I wanted in the beginning was a friend. So now, I am left to wonder whether or not he will respond to my simply asking to be his friend or whether he will write me off completely. Either way, I know that I am a stronger person for responding in the manner that I did. I don't want to be an afterthought for any one. I have been that, and it is brutal. Now I can read the signs and take pre-emptive actions to avoid such relationship pitfalls. Either way it still kind of hurts because you want people to think of you as the person you are (me: I am giving, caring, a little erratic at times but intelligent and knowledgeable, I am passionate about a lot of things in this life) not as some plaything who'll jump at his or her every beck and call. I am all of these things, and I don't think he ever really noticed my qualities and if he did then he probably didn't care enough to take them into consideration. I am, after all human, and a woman at that. I am ruled by emotion and insensitivity is one of the cruelest! Ha... I promised myself I wouldn't cry over any of this... shattered that one...

First Paragraphs... maybe

The sun is blinding as I walk down the few steps onto the paved driveway. My skin pricks as the heat washes over me, melting away the frigidness that has wrapped itself around my body. I leave the confines of the shade and shadows of the porch and venture into the sun. My body goes from being cold to hot in a matter of a few seconds. I continue walking along the short paved driveway until I find a spot on the curb between my two favorite bushes. I sit down heavily, drinking in the hot, dry early summer heat. I fill my lungs with the hot, humid air, feeling it warm me from the inside. I watch as large passenger, commercial vans come and go along the drive, either leaving dialysis patients to await a certain torture that only dialysis brings, or picking up patients and whisking them away from the torture chamber to once again revel in their respective comfort zones. I look at each person wondering what this particular treatment will hold, what he or she is going home to. The burning rays of the sun begin to shock the skin on my neck, face, and chest. I lift my hands and create a faux shield against my forehead and watch a number of vehicles pass by, some drivers peering at me from the comfort of their cars. After a few more moments, I push myself up from the curb and return to porch. I greet a few other patients as I take the few steps toward the porch. I continue to watch people come and go. Many of them I know by name. Some have pseudo-adopted me as a daughter, though I have yet to figure out why. I cannot call them by name if my life depended on it. I can only recognize them by face, but I continue to smile and talk to them as if I have known them all my life.

This has become my life. Sitting on the porch, watching the world go by, feeling as if I am stuck in suspended animation. Then it dawns on me that I am not alone. There are others, women I know and am close to, who are sitting on some stoop, in some chair, in some hospital bed wondering the same things, watching as the world goes by in a blur.

Skewed Perspectives...

My mom and I were talking and I was telling her my ideas about my dialysis book. I told her I wanted to talk to African-American women coping in some way with a terminal illness. But I told her that some of the people at dialysis didn't care how they treated their bodies. She raised an important point, that it isn't that they don't care, it's because they don't have the same access to certain things that I do. That floored me. And, like mother's always are, she was right. I have access to a lot of resources that many other patients at my center don't. My mom put it in the simplest terms. She told me that some people don't stick to their diets or take their medication regularly because they are in environments which do not practice such behaviors. When it is time to eat, there is no one there to determine whether or not the food prepared is dialysis friendly, that phosphate binder's are taken with each meal, that fluid intake is restricted. They simply eat as they have always eaten, not because they are being inconsiderate but because, maybe, it is too hard to change one's eating habits, maybe it is too hard to find the favorable foods for dialysis patients at the local Stop and Save.

These are all things that I have never really thought about because I have always had someone in my family battling some type of illness. I mean I make up the third generation on my mother's side. At the same time, there is always someone there to ask whether or not I have eaten and what that was, whether or not I have taken my phosphate binders, my blood-pressure medication, my multi-vitamin. Hell, my mom makes me check my blood-pressure daily! My aunt keeps me readily supplied with ensure. And she and two of my other aunts who are also nurses regularly ask how I am doing. One aunt even worked in a dialysis clinic! My grandmother has experience with the dialysis diet because my grandfather had kidney failure before he died, and so she knows how to prepare meals for me during Sunday dinners and when she is too tired, she allows me to splurge a little, but not so much as to make me sick. My mom has had open heart surgery twice and now finds herself facing the challenges of a restricted diet, and so we are in the process of discovering things that we can and cannot eat together. She keeps a pretty tight rein on me also! My dad has even gotten into to act! So, in the end, I must say that I think I do have sort of an advantage when it comes to a lot of things pertaining to some aspects of the dialysis experience.

It never amazes me that my mom can make me open my eyes and look at the whole picture before setting off in some idealistic direction that could have been totally wrong. So, now I must get a group of people who have resources such as I do, and those who are still feeling things out. I think it would, as my mother so assuredly pointed out, give the full picture of what we, as black women are going through when it comes to coping with illnesses and maybe give some women a link to the resources needed to become a little healthier or at least to know where they can turn when they need someone to talk to... Given that... I have a lot of work to do!

Don't Put Nothing Past Nobody!

I am beginning to understand why a girl I know from college always said "I don't put nothing past nobody!" I am learning that people have their own agendas in life no matter what you have done, are doing, or will do for them, even people in your own family. Maybe this is the reason that I have such a strained relationship with one of my sisters. She only thinks about herself in most cases and then wonders why my some members of my immediate family also have strained relationships with her. She would rather do things for other people in our family (namely cousins) than her own siblings. Today was no different. I was supposed to go get a haircut and meet with a gentleman about a job to get details on when I would start, my hours, pay, you know things like that. And not having a car, I asked her if I could borrow her car... I asked for four days straight and her excuse was she didn't know what time she was working (which is a bunch of crap because she gets her schedule each week, so she knew early on). But she didn't see fit to tell me until Wednesday night... a few hours before I had to do what I needed to do. By the time she told me it was way to late to be calling people asking for a ride. I was pissed because this isn't the first time she has done some crap like this. It amazes me that she cries and crap when people don't or can't do things for her, but she can pull some shit like this and be just fine with it!

This has been going on a lot lately, and I have finally come to the realization that it is not going to change, so I decided to wash my hands of her and her flakiness (and that's hard because we live together!) I figure if she can come up with overly retrarded excuses as to why she does certain things for some people and not others, then I can do the same thing. I wonder how she'll react of I refuse to let her use my computer... Or if I refuse to help her in paying some bill because she can't at the moment... Things would just become petty then and that would be the equivalent of sinking to her level and to tell the truth I wouldn't be able to live with myself. I would give someone the shirt off of my back if it meant that person would be warm for a few extra hours. But it has come to the point that I no longer trust her and believe me that is hard! As my friend says " I wouldn't put anything past her!" I have done a lot for her and she has burned me so many times, that I have become immune to alot of it. Like when she left me with a $300 cell phone bill that she has not yet paid me for (and she has the nerve to talk about my other friends!) Or when she got upset because I wouldn't babysit my cousin's kids so that the two of them could go out. There have been other situations too numerous to mention. This time pissed me off because she is messing around with my career and Lord knows that I need a job and want to work. But at the same time, it is my fault for depending on her and not having a back up plan. I should have known by now that something like this would happen. But se la vie. I know that in the end, I will ultimately achieve what I want to achieve in life and none of them will be from depending on someone else even for the small things, they will come because I depended on myself and trusted in myself.

So, now, on top of attempting to set up another meeting with this gentleman, I must now figure out how I am going to get to and from work (and believe me public transportation in Memphis, TN is about as reliable as a my biologiacal dad (it is essentially non-existent) but if it comes to that, then so be it. I'll ride the bus, even if it gets me there 45 minutes late and I have to walk ten minutes to get to my destination. If it means getting me the hell out of here then I am all for it!

There are times when I wonder how some of our personalities ended up in the same family. But them I guess that makes us who we are. I have great relationships within my family. Some are better than others, but even with all of the crap that I have gone through and am going through I wouldn't change any of it. I guess it'll give me integrity in the long run. Maybe it's teaching me how to deal with certain people and certain personality types so that when I get my PhD and begin teaching at the college level I won't be so naive and gullible (and believe me I am!) Anyway, I have to get ready for my Mexican soap opera! Gotta get some snacks and all that jazz cause once it begins I am not leaving the tv screen alone for a second!

JOB!! :)

Thank goodness, I may have a job soon! It's working for a friend of a friend, but I am not complaining! The job market these days sucks and the fact that I am a dialysis patient makes finding a good job that much harder, but he has promised to work around my schedule, which I am thankful for. So, say a small prayer for me in hopes that it works out for the best! I am tired of sitting at home!