I was reading some poetry written by dialysis patients and it made me realize that sometimes people have a tendency to solely focus on certain aspects of dialysis and kidney failure. It is funny that none of them talked about the really bad days, they only focused on the the "good" days they had, the nurses, the patients, etc. Do we, as patients dealing with disease such as kidney failure, cancer, and other terminal illnesses, solely tend to focus on one aspect of dealing with these diseases? Are we programming ourselves to just tell people that we are making it and that things are going ok? It irks me when I read the one sided writings that people offer. For me it's telling people that they will have more "ok" (there are no good days on dialysis) than bad days. It's like giving people only a portion of the emotions and experiences that they will more than likely experience. And that is a pure and total lie! You could walk into a random dialysis center and hear the complete opposite of what some patients are writing. People are pissed off, tired and fatigued, suffering, and trying to figure out in the hell they are going to make in through the next treatment. Yes, there are good days, and there are days when you cope a little better than the last. But that doesn't mean that you have to look at the entire situation with rose colored glasses. Reality is a lot harsher than we like to believe (or deal with) but, it is life and life is downright harsh at times.

I want people to know what I am going through. I want them to experience things through my eyes, through the eyes of an actual dialysis patient. I want people to know that though I am a survivor, I have gone through hell to get where I am, to be able to accept that I will be a kidney patient for the rest of my life, that I feel like I lost two years of my life because I was a dialysis patient. I want people to see the everyday struggles of dialysis patients, not just see the flowery words that some patient, who I feel is somewhat detached from reality, has written to give to the world. I want people to know that anger, frustration, sadness, hopelessness, etc. exist on a daily basis (and that isn't even for terminally ill patients). Some days I wanted nothing more than to pick up that damn machine and throw it across the room... or maybe drive a car through the building, and I let people know that. I also knew that it was something that I needed to sustain my own life. That was my compromise. I came to understand that, and I reached a balance between my emotions and dealing with my illness. I believe that balance is steeped more in reality than anything else. I have learned to roll with the punches and to make the next step accordingly, not to say that other patients have not done this. I just don't think that the negativity that comes with dealing with an illness such as dialysis is something that can be ignored. It's like attempting to ignore the pink and yellow polka dotted elephant in the room. You can't ignore it for too long. I also know and understand that people have different people have extremely different ways of coping with the stresses in life. I don't think I would be the person that I am without having gone through dialysis and now a transplant (yeah, people don't really tell you how hard dealing with a transplant is either). I have realized that I am a lot tougher than I thought I was, and that I have a lot of will power to endure whatever comes my way.

Maybe I just have a lot to learn about how other people deal with certain situations. I mean we all can't be angry and frustrated. So I guess those other patients are merely coping in the manner that is best for them. It's still a little frustrating though. My therapist thinks I should write a book about my experiences as a dialysis patient and now a transplant patient. I thought about it, but I don't really think that's an attainable goal for me. I mean I can tell people about my experiences as a dialysis patient all day long, but to put it in book form is a bit extreme for me. I don't know... she's been telling me that a lot lately... and I think she and my mom have been secretly talking because she has recently been telling me the same thing... hmmm... anyway... it's late and my mom wants to go walking in the morning, so I should try to get some sleep!

Volunteering

Today was one of the most meaningful I have had in a while... ok, well at least since the day that I had the kidney transplant. I attended an event with the Mid-South Transplant Foundation, and I had the pleasure of meeting a few families who made the undoubtedly difficult decision to donate the organs of a family member they lost. To say the least, I was in awe. Here are these families who have lost a loved one (usually a child) and had the foresight to pass on a gift to someone who needs an organ, tissue, or bone marrow. I met one lady and couldn't help but wonder what was going through her head. Her son died in January of this year and she decided to have his organs donated. I just looked at her for a moment and hugged her. Even though I was not the recipient of any of her child's organs, I just wanted to touch her, to let her know that she was my hero for making the decision that she made at one of the most vulnerable moments in her life.

It is one thing to think about the donor and the donor family. It is something completely different to come face to face with them. No words can express what either person feels at the exact moment a recipient meets a donor or a donor family. "Thank You" seems so trite in moments like these. You are looking at someone whose loved ones organs may be residing in your abdomen. Or, you may be looking at someone who may have your child's organs. It makes me wonder if they can sense their loved ones spirit though only a small part of them exists in a new body... It also makes me wonder if I, as a transplant recipient, can live up to the expectations that a donor family may have. I know that people say that there are no expectations, but I doubt that they would want their loved one's organs to be used by someone who would abuse that second chance at life. Having met a few donor families makes me want to strive harder in pursuing my goals, not just for me personally, but for the person who gave his/her life so that I would no longer be a dialysis patient, so that I would have my own second chance. I feel that I am not only doing this for myself, I am doing this for the unknown person that is with me now, and that person's family.

It is amazing how certain events and experiences change your views about life and people. I have come into contact with the most amazing, nurturing, encouraging, and loving people in the past two years than I had met in my short lifetime. And we came together as a result of loss, loss of life and loss of health. It is amazing because there is no grief. There is only happiness. Happiness at the fact that certain decisions have given someone else a second chance at life. Happiness at the fact that someone made the decision so that you, as a patient, could live a more meaningful life. People have pleasantly surprised me (ok well some, there are those that I wouldn't trust if they had a handwritten letter from God, himself). Hopefully, I am doing justice to the donor whose family decided to donate his organs.

THANKS!!!

I WOULD LIKE TO THANK EVERYONE WHO PRAYED FOR ME AND MY FAMILY DURING THE TRANSPLANTATION PROCESS!!! THANKS FOR ALL OF THE SUPPORT, THE CARDS, THE GIFT BASKETS (TAS and Ms. Davis) AND ALL OF THE MONETARY DONATIONS!!! I have been more than blessed and I thank all of you for all that you have done for me!!! I love and appreciate each and everyone of you!

Just some thoughts...

Life is weird... People always tell you to follow your dreams, but they only lead you to believe that the outcome of following that dream is what really matters. People don't tell you that your road (or roads) may not even lead to the dream that you have your mind set on or that they twist and turn precipitously. Maybe we as humans have an inherent need to believe in the goodness that is in life, that no matter what we go through all of it will lead to this point of living nirvana while we are living. But I think this forces us to turn a blind eye to the reality that is life. Life can suck, it can be pure hell at times! And when we are forced to deal with the bad that comes with life, we are ill-equipped to handle it because we have always been taught to focus on the end of the road, to keep our minds staid on the outcome that will, hopefully, bring happiness and peace to whatever meaning our lives have.

Yes, people, at times, are taught to face adversity head on, but no one knows how they will face it until they have some hardship to face. I have watched people cry and give up in the face of adversity. I have also watched people become trapped in the endless cycle that some unseen force has created in their lives. Those are the easiest things to do when life gets hard: give up and wallow in the hell that has come to surround your life. In all of the lessons that we have learned over the course of our lives, we are not taught to overcome. It is something that is inherent in our wills as humans, and it becomes stronger as we walk whatever road we have chosen to pursue. My mom always tells me to "go to your destiny." These four words have guided me through failure from law school, terminal illness, and now a transplantation. But she never made me feel that my road would be easy. She started telling me that in college, and she gave me a card and a smooth, shiny onxy rock. The card essesntially said that all rocks start out rough and mishapen, but as they move with the current of the stream (life, I am assuming) and rub and bump against other rocks and sediment that it will become smoother and smoother over time. So that has been my understanding of a lot of things in life, that things will be rough but they will help shape who I am in the end. Nothing made me realize that more than becoming a dialysis patient.

In the past three years my life has changed dramatically. I have spent two years on dialysis, and a year recovering from failing from law school. I have watched my friends and family succeed at everything that they have attempted. It was like they had the Midas touch, but everything that I did or thought of turned to ash in my hands. Needless to say, frustration began to rule every aspect of my life. It took me a year and a half to overcome the fact that I had literally failed out of school and was dealing with my failing health. I was winded for a long time, so I just withdrew into myself. I think watching and listening to other dialysis patients and dealing with some of the ignorant staff members of my dialysis center made me realize that life is way to short to wallow in the mess that had become my life. I had two choices: wallow in it like many of the patients at my center; or, find myself and figure out what road I really wanted to take in life. The latter required a serious and quite thorough evaluation of both myself and my life. So, with the help of a wonderful therapist I was able to figure out what I really wanted to do with my life, while at the same time learning to come to grips with the fact that I was a dialysis patient (now a transplant recipient) and knowing that it is something that I will have to deal with for the remainder of my life. I think this helped me reach a point which helped me transcend being a dialysis patient. It made me realize that I was still a person, even though I had to explain my situation to most of the people that I met, and though I had to go to dialysis three days a week (and it kicked my butt more often than not) I could still achieve whatever goals I had set for myself, I could still travel whatever road I wanted. It would just take me a little longer to reach my destination. It may take me the next few years to get a MA, but at least I'll do it.

All of this makes me wonder if other people, no matter what they are going through, have gone through such transformations... Hmm... I guess I'll talk to other people about their experiences... In other news... there is no other news! I'm tired... I'll keep you informed as things progress. I have to go find scholarships for graduate school, which is a pain in the butt! Maybe I should be like the lady on the internet and beg people for money to help pay for school... I think I really could set up a fundraising campaign to help pay for everything... Hmmm... I wonder if that will actually work... I guess we'll find out... Until next time....