LIVING A LIFE OF PURPOSE AGAINST ALL ODDS by Kimberly
As I sat across from Charlie on March 8, 2012 he said to me “my body is telling me things it has never said before, new things and I need to listen. It is important that I take care of it. I think my time is coming.” Charlie shared with me that he had missed his last two dialysis appointments because he just did not feel that his body could handle it. He also shook his head in sadness as he told me how horrible it was to watch all these elderly people at dialysis and how sick they are and the unfairness of all that these people have to go through, never including himself in this group. Never looking for pity, always looking out for his fellow man and ways he can assist others in their healing. This is Charlie’s story.
Charlie was born on December 25, 1975. According to Charlie’s mother Renee, the physician told her that Charlie was born with a birth defect that affected approximately 1 in a million infants. Although this statistic has not been verified, this is Charlie’s story and I am sticking to it the way it was told to me.
The physician told Renee, Charlie’s mother, that she should get prepared because Charlie might not see his first birthday. But Charlie did see his first birthday and his second and third and continues to have birthdays even after more than 150 surgeries. Charlie underwent his first surgery when he was only three days old to move the ureter’s from both kidneys to the outside of his body where they stayed until he was 13 years old. Up until the age of six, Charlie wore a diaper until he was old enough to have an ostomy bag. When Charlie was 5 years old, they attempted to insert a Supra Pubic Catheter into his bladder. Renee, Charlie’s mother signed releases allowing photos to be taken. However, during the surgery they found that the bladder was the same size it had been at birth and would not stretch to accommodate the catheter. The photos were included in a medical journal and Charlie returned home after recovery to wait until he was older. At the age of six they connected his ostomy bag and he wore this until after his thirteenth birthday. Aside from all the surgeries and hospital visits, Charlie had a relatively normal childhood riding his bicycle and playing with other children. Charlie smiles when he talks of his grandfather. He says that his grandfather told him many times that he fell in love with Charlie the first moment he saw him because Charlie looked at him cross-eyed. However, Charlie is not cross-eyed; in fact his vision is clear. He has a vision of healing and helping humanity through his purpose here on earth.
When Charlie turned 12 years old they attempted again to insert a Supra Pubic Catheter unsuccessfully. His bladder never grew because it was never used and they were unable to stretch it to accommodate the catheter. At the age of thirteen Charlie underwent 26 ½ hours of surgery. The first 22 ½ hours were spent removing a piece of his large intestine to create a new bladder that would accommodate the catheter and replacing his original bladder with the new version and then continuing on with the procedure to insert the Supra Pubic Catheter. During this surgery the ureter’s that had spent 13 years outside his body were finally put on the inside where they belonged. At the completion of this surgery his parents and grandmother were told that something was left inside of him and they had to do immediate surgery to remove it. It took another four hours for this surgery and they never found out exactly what the ‘object left behind’ was. Charlie talks about all these surgeries the same way most people talk about driving to work or getting the mail. It is just another day in the life of Charlie as he shares these memories. However, there is always laughter and excitement in his voice when he tells a tale of his many ambulance and emergency room adventures and the reactions from the nurses and doctors because he is generally the only one that remains calm and in charge. And he does take charge of the situation protecting the body that he feels has a purpose.
It was 1996 when Charlie was rushed into emergency surgery to remove his spleen. He said he died on the table and felt euphoria and that it was his third time dying since birth. I asked him once how many organs he has had removed and he responded “it would be easier to tell you how many I have left”. In 1999, they removed Charlie’s kidneys and he began dialysis. In 2002, Charlie’s number was drawn for a kidney transplant. He arrived at the hospital and was prepped and taken into surgery. After 13 hours Charlie awoke to find out that the transplant had not taken place. When the surgeon saw Charlie’s bladder that was filled with mucus he stopped the surgery. Medical error led to Charlie not getting his new kidney. A bladder never contains mucus unless of course it is a manmade bladder from a portion of the large intestine. The surgeon had missed this in his medical records and felt that the bladder had infection in it. A month later a friend who had an exact match offered to donate one of his kidneys but the day of the surgery changed his mind. It was shortly thereafter that Charlie insisted he be taken off the kidney transplant list. He felt that he did not want to prolong his life for 1 year if a kidney could save someone else for longer and he backed that up with “it was an easy decision.” He said that there was a reason that these two opportunities did not pan out. He told me, “after all I have already outlived myself many years” and he smiled.
With no kidneys and dialysis a minimum of three times a week, new complications arose for Charlie. Dialysis ports and graphs, and loss of circulation in the lower extremities, Charlie began walking with a cane for added stability. One of the many stories Charlie shared with me is the time he and his parents were leaving to go someplace. His parents walked out of the house ahead of him. As Charlie walked out the door he heard a noise overhead and stopped. He says he realized the ice was coming down from the roof and with his unstable gait felt bracing himself the best option. The snow and ice on the roof completely came down over his head and shoulders. Afterwards he looked at his father and said “wow, that didn’t even ring my bell”. To which his father replied, “Ring your bell? You should be dead”. Charlie had me feel just behind the crown on his head where there is a ‘flattening’ that he says is from the ice failing on him.
I had met Charlie in 2000 but it was not until the summer of 2007 that my relationship with Charlie truly began. He had heard through a mutual acquaintance that I was doing something called Reiki and he was very curious. He asked me to ‘experiment’ on him. I have to smile every time I recall that day. I did a technique with Charlie that I refer to as ‘time travel’. Having Charlie use breath and guiding him, I took him back through the years releasing trauma and emotional blocks while administering Reiki. This session lasted all of maybe 15 minutes. He looked hopeful and skeptical but thanked me genuinely. Three days later I was in Vermont conducting some training when a text message came into my phone. It read like this: “I don’t know what you did, but I want more. I haven’t felt this good in years and I have been outside with the weed eater and have not had to use my cane – Thank you”. I stared at my phone in amazement and wonder and said a prayer of gratitude. I had to look at the message numerous times throughout the next couple of days before returning to New York because I was having a hard time believing what I was reading. When I returned to New York I took my table to Charlie’s and assisted him onto it. We discussed spirituality and how Reiki works during the hour long session that included the use of quartz crystal points around his body. A few days later Charlie texted me and asked if I could stop by the house. He said he had something for me and wanted to share the news. When I arrived Charlie shared with me that during his last dialysis treatment they were able to let off an additional 2 liters of excess fluid and when I looked his previously swollen ankles were remarkably smaller. Charlie then presented me with a poem he had written. Poetry had always been a way that he expressed himself.
This is Charlie’s poem.
Thank You for That Thing You Do
Thank you for truly caring, There aren’t a lot of people who do.
Then again, I haven’t met, very may people like you.
Most folks, who believe that they care, do so with only half of their heart.
But you’ve been whole heartedly concerned about me, from the very start.
So many have said, “They WISH they could help”, but never act on what they say.
You’re the only one who has ever tried to help, to take the time out of your day.
I admit, at first I was skeptic, wondered if your technique would really work.
After 2 days my wonders were answered, had me feelin like a jerk.
For the first time in MONTHS, spent a whole day in the sun, I almost forgot how good it can feel.
To the average person, that don’t mean that much, but to me it’s a VERY big deal!!
You’ve opened up doors for me that have been closed for so many years.
When I reflect back on what you have done, it’s enough to bring on the tears.
I don’t take friendship lightly; I feel it’s a title that needs to be EARNED.
And with all the Frienemies I now have, I’ve definitely lived and learned.
After being let down repeatedly I’ve become VERY skiddish about who I let in.
But I trust my heart and my gut when they tell me, with you, that won’t happen again.
Compassion, kindness, and honesty, Qualities that most people now days don’t possess.
I feel fortunate to have found these qualities and more in you, you’re a step above the rest.
Just wanted to write you this poem, to express how much I appreciate what you do.
Kinda glad God made me the way he did, cause it gave me the opportunity to get to know you.
After reading the poem I asked Charlie about the ‘Frienemies’. He said that he had received a large monetary settlement once. He had many friends and he shared with me numerous stories of the things they did together at his expense. That is, until the money ran out and then so did the frienemies run out.
Charlie has had no less than 30 surgeries on the femoral artery in his thigh, although, he says he stopped counting after 15 and does not count the minor procedures. The continual use of the dialysis port caused the artery to weaken and in order to keep it open they had to insert a stint about two years ago. During the procedure the balloon popped and came loose and took a ride through the artery. The doctor was keeping close tabs on the balloon on a monitor and told Charlie if it reached his heart or lungs it was all over. While monitoring the balloon in the OR and working to retrieve it over a 4 ½ hour period to the doctors dismay the balloon entered the heart went through the valve and was spit out the other side before they were able to retrieve it in the other lung. When Charlie woke up he complained of a backache and his physician said “you shouldn’t be alive, only you Charlie”. Another time Charlie had severe pain in the back of his head and after examination the doctor told him that an aneurism had burst in the back of his head. He said to the doctor, doesn’t that kill you? To which his doctor replied, “Most people yes, but not you Charlie”.
Charlie is judged by many people including some of his doctors. This is something that he has come to accept. Charlie loves his ink, has numerous piercings, a pony tail that hangs from under the bandana that he wears under his ball cap, and smokes marijuana for medicinal reasons. Charlie smokes marijuana against medical advice, however, has never hid that fact from his doctors. He believes that it has kept him alive and has assisted in treating his depression, anxiety, insomnia, upset stomach, headaches, pain and lack of hunger. He told me, “sometimes I come home from my dialysis and I just don’t feel like doing anything, especially eating. A little weed always helps me eat”. His hope is that marijuana will be legalized while he is still alive. In Charlie’s opinion, “Americans are not given every opportunity for good healthcare because so many patients are denied access to marijuana.” He feels many of the patients he sees at dialysis could benefit from this herb and once attempted to organize a ‘sit-in’ after obtaining over 500 signatures on a petition. His goal was not only to raise awareness of the health benefits of marijuana but to help raise money for other dialysis patients.
Charlie and his mother Renee do not have much when it comes to money. Charlie’s mother Renee is unable to work due to physical pain. In the last couple years she has had open heart surgery and has two metal valves in her heart. But they are rich with love for each other. Renee cares for her son through all her own pain without hesitation. As I sat across from Charlie on March 8th of this year watching his mother change a bandage on Charlie’s foot, I could vividly see the mother who gave birth to this child of God and the same love she felt the day he was born is clearly written in her heart today. Shortly after this changing of the bandage on his foot, the public health nurse arrived to change the vacuum bandage on his upper right leg where the port blew out leaving a hole large enough to insert his fist just weeks ago. Due to the blown port in his thigh, they moved his dialysis port to his chest. The same stealing syndrome (where the port steals the blood from the extremities) is now occurring in his upper body and he is losing circulation in his hands. Charlie no longer walks with a cane; he now has a motorized chair to escort him where he needs to go as he no longer walks. As the public health nurse changed his bandage his mother told me “I could never place him in a home, I will always take care of him” as a tear escaped down her cheek.
Charlie says that he always has some infection going on, mostly in his sinuses due to a deviated septum. Of course, I wonder if this is due to one of his other adventures he shared with me from his youth. He tells me he was intoxicated riding his bike to a friend’s house. He was going quite fast down a hill when he hit a deer. Yes, you heard right, he hit a deer on his bicycle and it propelled him over the handlebars face first into the pavement. He claims this is the only time he was ever knocked out. Charlie is definitely one in a million as the doctor told his mother all those years ago. He says his message is Hope and to never stop believing. He gave a bloodstone to an elderly gentleman at the hospital once who was sitting in despair awaiting test results to see if he had lung cancer. He insisted the gentleman hang onto the stone and have hope and never stop believing. This gentleman approached him a couple years later and pulled the stone from his pocket and told Charlie he never let go of it.
Last year Charlie and his mother had an ‘angelic experience’. They had walked downtown in the evening to an establishment. As they were preparing to leave they noticed a man standing alone near the door watching them. Everyone walked past him as if he was not there. As they were exiting the building he walked up and said “would you like me to walk you home”. They said it was strange because neither of them felt at all uneasy so they said sure. As they walked they spoke to him and he spoke back always softly and smiling all the while. He told them that his name was Tom. All at once Charlie slipped and fell backwards striking his head on the sidewalk and said he knew he had split his head open. The man reached down and told Charlie to reach up. So Charlie reached up and took his hand and Tom helped him up and said ‘everything will be alright’. That was it, nothing more. Charlie reached to the back of his head and nothing was there and as his vision cleared he realized his head did not even hurt. When they rounded the corner to their apartment he again said “everything will be alright”. He continued walking up the street and they never saw him again. A week or two later they received notice that the new apartment they had been trying to get into had opened up and everything was going to be alright.
I never know what I am going to take away with me when I visit Charlie, but it is always something good. He told me that “the only thing you take with you is the love in your heart and your memories; I have never seen a luggage rack on top of a hearse.” And the laughter is always plentiful also. Charlie has a wonderfully optimistic and humorous outlook on life. He told his surgeon this week, “I ain’t got it so bad; a lot of people are worse off than me!” Charlie decided quite a long time ago to donate his body to the physicians that have taken care of him in the Hope that by doing so it will save someone’s life someday. Charlie is the epitome of Hope and compassion, and he has taught me a great deal about acceptance and gratitude. He tells me he would “rather have a celebration of life with friends and loved ones while he is alive than to have a bunch of people come view him in grief after his death”. “My entire life I have made people laugh” he says, “I have no desire to make people cry.” I believe there is a much deeper message in the words he shared with me on March 8th and it could be for all of us. “My body is telling me things it has never said before, new things and I need to listen. It is important that I take care of it. I think my time is coming.”
*On February 6, 2014 Charlie was released from the hospital after a seven week stay, his longest yet. He was admitted in December just before his birthday and his mother was told he would not be coming home. The physician and hospital staff told Renee that if he made it this time he would need to be in a nursing home. Charlie was admitted due to severe malnutrition and his body was failing. December 25th I visited Charlie, it was his birthday, and spent some time watching him come in and out of consciousness. An uncle who had previously passed was in the room asking Charlie “are you ready to throw the towel in yet kid?”. I knew that Charlie was not ready to go yet, but his prognosis seemed grim at best in that moment. I watched Renee and could see the fear and uncertainty in her eyes so I chose not to share with her or Charlie that his uncle was standing by. On February 6th I sent a text to Charlie to see how he was doing before sending this blog to ESP and within seconds my phone was ringing and it was Charlie very coherently talking to me and barking orders to the hospital staff simultaneously as they prepared to discharge him from the hospital. Later that day he phoned and we talked about his last seven weeks and I shared with him the message from his uncle and he laughed and said, “yep, that would be Uncle Ron, he just passed a few months ago. Charlie said he was not the only one in the room as his grandparents sat by his bed frequently during his stay. He said “I was never alone”.