This is a story of caring, faith in God, and the undying drive of the human spirit. My name is Joe. I am 46 and I work as a nurse at a large Medical Center in Chicago. I work for a department that deals with patients with CVID, also known as Common Variable Immunodeficiency. In layman’s terms these people have limited function of their immune system. They are prone to getting recurrent infections that require frequent hospitalizations and cause severe disruptions in their lives.
This population of patients is very small but I have the honor of taking care of 21 of them and I have been doing so for 9 years. These patients see me every 2-4 weeks for infusions of a blood based product that gives them, in a sense, an artificial Immune System. The administration if this drug requires a blood draw and an infusion that lasts for several hours. I have worked with them so very long and watched them struggle with their lives that I have become very attached to most of them.
I see them when they are well, and I see them when they are at their worst and feel like they have no life and don’t want to go on any longer. I have shared a story with many of them, as I find that they struggle with their lives day to day. I am going to share that story with you. When they see me for an infusion visit, they are with me for about 2 to 3 hours each visit. I therefore, share this story with them slowly throughout their treatment over a period of months and sometimes years. The facts in this story are true. They are not made up and they are actual events that an acquaintance of mine has shared with me or I have seen. This is the man’s story……
This man seemed to struggle since the day he was born. To start out life, he was a very large baby and his mother was very small. In an attempt to deliver him they used something called Crutchfield Tongs on his head to help him be delivered. The doctor’s broke his septum and his cheekbone while he was being born. In his baby pictures that were presented to his father, his entire face was black and blue. His father refused the pictures; therefore there were no real baby pictures of him. Throughout his childhood he was a very sick kid and was constantly being admitted to the hospital for swelling in his feet, bronchoconstriction, severe allergies, and other unexplained ailments. He was a happy child and was always smiling and took all of this in stride. It seemed it was his destiny just to suffer his entire life. But as a boy, he was a very driven child.
He could not stand to be told that he could not do something. There was a fire inside him that made him push himself harder and harder every day. Throughout his school years, his parents had difficulties as well. Both of his parents were High School dropouts and his father had medical problems as well. His father was also a very mean man when he was drinking and he did this almost every day. So the young boy, who grew to be someone I know well, endured a very harsh life and learned to do without many of the things that others had. At the age of 12 he began reading the Bible. He was determined to try to find some answers about what life was about. He also began reading a lot of Philosophy books. He was an unremarkable student. He went through school at the lower end of the grade scale and appeared to not be very intelligent.
His behavior was due to the constant beatings from his father and his fathers constant harassing of him telling him he would never be good at anything. He waited patiently always knowing he would leave his home and not come back. He knew he would continue to learn and try to grow as a person and to heal the wounds caused by his parents. He entered the Navy at the age of 17 and the whole world changed for him. He was advanced in rank very quickly. He attended many schools and received a lot of advanced training. They did IQ testing on him and determined he was indeed very intelligent. He went to several different countries around the world. He met the President and the Russian Prime Minister while he was in the military. After a little over three years, his active duty service ended and he returned home to see if he could help his family situation.
His mother had conveyed that his father had become extremely violent and labile and that she wanted to leave him but was afraid to. Two months after he came home he was driving to a Naval Reserve meeting and is car was struck head on by a drunk driver and he was broadsided by a semi truck that was behind him. He was ejected from his vehicle and while he bounced down the pavement he broke almost every bone in his body and his life ceased. On the way to the hospital the paramedics managed to keep him alive.
The man died 4 times on the table as the doctors tried to save him. On the fourth attempt the doctors sent for his mother, they had been working on him for 47 minutes and he still had no heartbeat. They stopped resuscitation on him and the man died. At least that is what everyone thought. Six minutes later the man took a gasping breath and tried to sit up with his severely broken body. He had not died. The list of his injuries is easy to describe, he broke almost every bone in his body. His back was the most concerning, it was broken in three places and he was told he would never walk again. My friend almost slipped into despair, he did however remember the teachings of God that he learned as a boy and to everyone’s surprise he returned to work 6 months later with a cast on one leg and an immobilization brace on the other.
At this point in time my patients always comment that the man is very lucky and that they are glad he did not die. His life seemed to return to normal for a while. He participated in Bodybuilding shows until 1989 and then stopped competing when he got married. His life was pretty uneventful until 1996 when he took a job as a Police Officer. My friend had found his true calling. He loved what he did and was very respected by his peers. He was voted the class commander by his peers while in the Chicago Police Academy.
Upon graduation he started working in the Investigations Division of the Police Department dealing with drug interdiction cases. After one year on the job, he received the Exceptional Service Award from the Police Department. He was the first rookie officer in the history of the Police Department to do so. On May 15, 1997 he had another hurdle in his life. He fell and shattered his left kneecap trying to take a man with a gun into custody. He had to continue to fight with the man until he got him in handcuffs even though he knew he was severely injured. When he arrived at the Hospital, his leg was so severely injured that the doctors wanted to amputate it. The man refused and told them to fix it. The doctors attempted to fix it. They did their best but the man was left to live his life in constant pain and at times he wished that they had amputated it. He also had numerous other health problems that were related to the injury. He got a bone infection that messed up his immune system and shot down his Thyroid. He had recurrent rashes and episodes of swelling in his torso and feet that would not be explained. He underwent numerous bone biopsies, was told he had bone cancer and numerous other ailments as doctors searched for the answers. In a ten year period he had to undergo 21 surgeries.
The doctors had also discovered that he had broken his neck at some time in his life and in 2004 he had to have three vertebrae fused together using a titanium plate and six screws and bone from his right hip. Needless to say the man did struggle. My patients assume the man didn’t work as he went through this and they often say that. I tell them, no, he attended college and got a degree the first couple of years. He did really well too. He graduated with a 4.0 average and he received numerous academic honors at graduation. He worked part time through all of it. He was going to attend Law School and then was guaranteed a job as a States Attorney.
At that point in time my patients ask if he went to Law School and I tell them no. They usually say something to the effect of, “Law School would be tough having all of those medical problems.” I tell them, no, that’s not it. He didn’t attend Law School because before it started his wife got cancer. He watched her almost die twice over a four year time point while she struggled with Kidney Cancer. Usually by this point in the story my patients say, “My disease is nothing compared to what your friend went through.” I disagree with them. I tell them everyone struggles and everyone’s struggles are difficult for them in their own way.
I always tell them this story does not minimize what they are suffering through, it just illustrates that many people have struggles in their lives and you must have faith, pray, have hope and lever give up. I tell them that the man returned to a position in a career that he had left to become a Police Officer. That he hadn’t wanted too, but after he did, he learned to appreciate new and different aspects of it and to appreciate them. I told them that even though the doctors had done numerous tests on him over the years concerning the weird ailments, none had come up with definitive answers.
Please recall, I mentioned this man’s intelligence was discovered while he was in the Navy. He compiled all of the data from the tests and spent several years looking for an answer. He found it after several years. He approached the doctors with his theory and they agreed and started him on the appropriate treatment. At this point I always remind my patients that they have to be an advocate for their own health and that they need to learn about their disease and its treatment and not place all of their decisions in the hands of their doctors. Usually at this point my telling of this story to my patients ends. They do ask questions over time, questioning minor details of the story, over a period of time, as we spend time together and they receive their infusions. Then inevitably, time passes and I help them through their lows and rejoice with them through their highs. However, the discovery of this story usually occurs when they are at their worst and feel that they cannot go on any longer.
I am always with them when they hit rock bottom or very shortly after. I offer comfort with my presence and sometimes we talk, sometimes I just hold their hands and we say nothing. Inevitably, the story of my friend always comes up at those times. The question that they ask is always the same. It is very odd. These patients make it through alright a majority of the time, but I truly at times understand their frustration. They always tell me that the story of my friend that I shared with them has caused them to pray more.
They tell me that his struggles have given them strength. They tell me that they have learned to be more patient and that they understand God will never give them more than they can handle. I agree with them that God NEVER gives any of us more that we can handle. Now I am a very large muscular man and have been lifting weights for 30 years. They always tell me that I make them feel safe with my presence and in the way that I take care of them. They also tell me I am very smart and that I have helped them immeasurably.
Then the question is always the same. “Whatever happened to the man that you told me about?” At that point, I tell them that he turned out OK and that he was very happy with life. They ask me, how could someone be happy after all of that? I tell them his faith! Then they ask me if I ever see the man anymore? I smile at them and take their hand and tell them yes! I see that man every day when I look in the mirror. You see that man every month. That man is sitting here with you now. That man is me! And they realize that in the many years they have known me I have struggled along side of them. They have not been aware of my struggles as they wrestle with there own. When they realize it they often begin to cry. They ask me why I didn’t tell them. I tell them that they were already dealing with a lot and it was not my place to burden them. They always ask me what it was like to die. I tell them I remember hearing everything. I could hear them say I was dead. I remember feeling the presence of God and I remember in my mind having a conversation with him. I remember telling him it hurts to bad I don’t want to go on I just want to let go and die. That I pleaded with him. His answer to me was, “NO, you have more to do in this life.” Then as I sit with them I realize he knew exactly what he wanted me to do.