When is it OK to punch a doctor in the face?

I was so terribly upset and crying my eyes out. I could hardly breathe and my body was quivering. And then the doctor said something that made me so angry. Somehow I did not blow up in the doctors face. I made a fist and then thanked him if you can believe it. Looking back now, I wish I had told him the truth of the matter. I often go over it in my mind and part of me wishes I told that doctor what I really thought of him. To this day, it makes me so angry. I never know when that anger will bubble up. Usually while I am walking alone.

I don't think I have ever really gotten into the details of that week in April, 2015. There a lots of details but I will give a brief summary so I can keep this short. I will never forget that horrible day.

John was at work one day when all the sudden something happened. I know from an analysis after-the-fact that he must have experienced fear to go along with the sudden pain in his head. And he had temporarily lost his eyesight for a short while. He certainly knew something was very wrong. After being rushed to the hospital, he was admitted into the Neurology ICU at Fairfax hospital where he started getting round the clock care.

At first, the doctors speculated that he had meningitis. But with John's history of Spina Bifida and Hydrocephalus, it seemed likely that he was having a problem with his shunt. He had experienced shunt failures in the past when he was a young boy. These failures led to near death situations. Thankfully his specialists back then knew exactly what to do. The fix was shunt revision surgery.

It seemed like John might be headed for another one of those corrective surgeries. But for some reason, that course of action was not pursued. Instead, John suffered immense pain in his head and was weak and not hungry. The staff at the hospital treated his pain with pain medicine. In fact, they over medicated him. No one thought to consult with John's neurologist who was familiar with his history. Despite my mother asking them to do so. Their answer to my mom was that John's doctor would not come to Fairfax Hospital. In hindsight, we should have documented this as one of the many failings of the hospital.

After more than a week in the hospital, most of the time in horrible pain, the doctors finally decided to perform shunt revision surgery. This surgery involves opening up the skull as well as the abdomen to insert a new shunt which is a long plastic tube that drains excess spinal fluid from the brain. Shunts are very common in people born with Spina Bifida and Hydrocephalus. Here is a photo of John's head after the surgery.

Remarkably, despite the doctors bumbling about all week trying to decide what to do, the surgery was seemingly a success. For the first time in a long time, John's headache was gone. And I can tell you that he was pretty darn relieved. His anxiety had gone way down and he was starting to picture himself going home.

However, that night, things took a huge turn for the worse. I spent the night with John in his hospital room. Unfortunately, I did not realize what was happening before me. John's condition was getting worse and worse. His headache was gone but something else was happening. His heart rate was elevated. It was higher than my heart rate gets when I run several miles and he was not moving and had not been out of the bed in days. And he had shortness of breath. And John's belly was swollen. I alerted the nursing staff but they said that the monitoring machine would alert them if there was a problem. So much for care. You would think a health care professional would be worried about elevated heart rate for hours and hours, shortness of breath, and distended belly.  But the machines....

So John spent that night in horrible pain, uncomfortable and scared. He would call out my name and say, "Water." I would drip a few drops of water into his mouth and tell him that I loved him. Hearing those words seemed to comfort him. He said, "I love you too." That is all I could do. His condition got worse and worse. I complained to the nurses but they seemed nonplussed.

In the morning, a nurse came in and said that he needed to be prepped for surgery. They were going to do exploratory surgery to see what it was that they had screwed up when they did the surgery earlier. I heard a doctor say that perhaps they had "nicked a bowel." As part of the surgery prep, the nurse told John that she had to insert a tube down his nose to drain the fluid that was accumulating in his stomach. When the nurse was about to put in the tube, she said, "This is going to be uncomfortable." John belted out, "Just do it!" He was tired of the hospital, tired of the nurses, fed up with being in so much pain.

As soon as the nurse inserted the tube, it started to drain a dark red and brown fluid into a collection chamber. The chamber was filling up rapidly and the nurse called for help. They needed more chambers quickly. Just then, John violently vomited more red and brown fluid. His eyes rolled back and he crashed. The nurse had to call for the emergency crash team. A team of doctors rolled in with special equipment. One young doctor was asking the nurse questions she did not have the answers for. But I had been with him all night. I told him how many bags of IV fluid he had consumed which is the main thing he seemed to want to know. I am not sure what they did but they stabilize him. But John was weary, uncomfortable and in pain. It was around this time that John started moaning, "I want to go home." It still haunts me to this day. "I want to go home. I want to go home!" It was plea for all the madness to end. The poking and prodding, the procedures, and of course, the pain.

After that, the rest of the family had arrived. They took John down to for emergency surgery. I remember my Mom telling him that the doctors were going to make him all better. Honestly, John's eyes seemed to show his disbelief. He knew things were bad. He did not seem to believe us. The anesthesiologist had quite the concerned look on her face as she had my Mom sign consent papers that mentioned that any surgery has risk involved, etc. I guess the hospital has to cover itself. They don't want to get sued I suppose.

They took John away on the gurney and we all filed out to the waiting room. We were all now in a familiar place. John had so many major surgeries in the past and he always came through and recovered like the trooper he was. As we were waiting, I decided I could go get everyone lunch. So I took off with everyone's order and drove to a sandwich shop in Vienna. On my way back from the sandwich shop, I texted my brother Erik to ask about drinks for the sandwiches or perhaps another question. He told me to just come back to the hospital. When I arrived, I could not find my family in the waiting room and then I saw one of the pastors from the church.  He looked me in the eye and told me the bad news. John had passed away.

I was shocked and so angry. They took me back into a room with the rest of my family. They were all there and had a head start on the realization that John was no longer with us. I cried and cried. I was so upset. Soon after, some hospital staff arranged to have us go back and see John. A woman explained that his hand might be warm but that he was indeed gone. We went back and there he was. He was covered in a sheet with a tube sticking out of his mouth and his hand on his chest. I grabbed his hand and it was ice cold. I wept uncontrollably and said, "It''s not right! It's just  not right." John was my pal. He always had been. And I was devastated by his passing. We all were.

And then enters the doctor. He was here to tell us what happened. He went through some lame explanation about how it all went down on the operating table. Ultimately it was a pulmonary embolism that killed John. But this is where the doctor made a big mistake. He said, "Well, he did not feel any pain when he died." That made me so angry. But I squashed the anger. It was an amazing feet of control really. How could he say that. John spent his last week on this earth in terrible pain. He last words were, "I want to go home!" He spent the entire night with an elevated heart rate and shortness of breath. He was dying right before me and it was at no time pleasant. How dare this doctor say that. My brother Erik saw my clenched fist and later told me he thought I was going to lose it. I didn't but sometimes I wish I did. For John. My pal. My buddy. My first friend. My inspiration. By brother. I love you John. I miss you and will never forget you.

Embracing Grief

As we approach the anniversary of that terrible day in the hospital last year, I wanted to talk about grief, happiness, and the ups and downs of loss. Many of you have lost loved ones and know that the grief really never goes away. It will always linger, sometimes prominently, sometimes in the background. And although grief is present in my life, it does not mean that I can't be happy sometimes. I smile. I joke. I enjoy myself, my family, and my friends. I make people laugh and they make me laugh. I do things that I like to do and try to engineer my life in such a way that I set myself up for success in both work and play. I also feel sad, sometimes overwhelmingly so. But I like to try to put on a happy face. That's the way I was raised. My parents both always smiled, nodded politely to strangers, and gave off a positive vibe whenever possible. 

However, it was not always easy and there were times of worry, pain, and sadness. By now, those of you who have followed my blog and seen my pictures on Facebook know that I like to be as positive as possible. I don't see why anyone wouldn't be. To me, social media is not the place for constant doom and gloom. But sometimes the happy pictures mask some of the darker times. The picture above is one of the few that I have showing discomfort and pain in both John and my Mom. You can imagine John's discomfort while stuck in his body cast after major invasive surgery. One of many surgeries. 

Discomfort, pain, and unhappiness are part of life. We can accept it, let it wash over us, and know that happiness will return or we can dwell on it and let it erode us. It can be a roller coaster. Smiles one minute, uncontrollable tears the next. But I think the key is knowing that it is OK to be sad and to embrace it fully and talk about it, don't hide it. 

That's what I want to do today. Talk about it. Lately, I have felt especially sad as I miss my brother John. I can't help thinking about those last days in the hospital. In hindsight, I feel like I could have done more. I could have demanded better care from the doctors. I could have known more about my brother's birth defect and how it affects adults. I feel like I could have done so much more to fight for John. Could we have prevented his death? Maybe. I truly think he would have had a much better chance with better care and if I had been more assertive. 

Whether that is true or not we will never know but that is how I feel about it. I accept that John is gone although sometimes it is hard to believe. But I will always remember that night in the hospital and the morning after. And I will always wish I had acted differently. And that is OK. I don't think it is unhealthy to think that way. In time, the sadness will not be as deep, the regret not as strong. I know that. In the meantime, I will cry, I will fear the night. I will grieve and I will remember John's pleas to go home, his requests for water, his fear, his struggle to breathe. I will remember him crashing and spewing dark liquid and the shock in his eyes. John knew things were bad, real bad. He knew more than anyone in the hospital I think. 

I miss you John.

My Brother John

Thank you all for coming today to celebrate and remember my dear beloved brother John. Today I would like us to remember John, share some stories about him and of course-say good by to him.

John Rosen was a real jerk, said no one ever in the universe. On the contrary, John was the exact opposite. You can just look around the church here today and see so many people who were touched by John's life.

It is safe to say that all of you knew my brother in one way or another. For some of you he was a coworker. He was the coworker who was reliable and always polite and smiling. For some of you he was a former classmate who always had a sunny disposition and a positive attitude. For many of you here today he was a part of your church family. He was the guy who was always smiling, always positive. For the rest of you he was a good friend. Someone that again, was always smiling, always polite, always asking about your well being or the well being of your family. Some of the words that have been used to describe John are "brave", "courageous", "kind soul", "positive attitude", "gentle soul", "understanding person", "inspirational", "empathetic." Truly John was all of these things.

John was a brother, an uncle, a cousin, a nephew, a good friend, and of course a loving son to a wonderful mother and father. Today, I would like to talk more about John and tell you some things you might not have known about John and share some of his stories.

John was born with Spina Bifida which is a birth defect that affects the growth and development of the spine in an unborn baby. When I was a kid, Spina Bifida was a big word so our parents used these words to describe it. We always said, John was born with an "open spine." If you want to learn more about it, I invite you to google it or check out the brochures available.   Nowadays Spina Bifida can be detected in a developing fetus and surgery can be performed in utero to correct the problem. For John, that technology did not exist and for people of John's cohort who were born with an open spine, they were most often confined to a life of limited mobility with not as many life opportunities as the rest of us.

However, in John's case he was fortunate to have a brilliant young neurosurgeon and a genius mad scientist of a doctor at Children's hospital in Washington DC. He was also fortunate to have super supportive parents. My mom and dad went the extra mile to provide John with the best care possible. My mom and dad's unconditional love along with my dad's engineering brain helped contribute to John's rich life. In the beginning of John's life though he had to face a number of challenges, and the solution was often surgery.

Dr. Milorat was technically not even on the staff at Children's hospital when he performed his first surgery there. John was his first patient. Dr. Milorat had been repairing spines in New York and was well known for being a superb neurosurgeon. Dr. Milorat thought that John would be able to walk which was certainly not true of many people born with an open spine. John had only been alive for 4 hours when he had his first surgery to close up his spine. Later at one month of age, John had a plastic tube, a shunt, put into his body that drained cerebral spinal fluid from the brain down into his stomach.

Dr. McKay was performing revolutionary surgery to repair, correct, and rebuild children. I can imagine the conversations he must have had with other doctors. "Well, why don't we fuse those bones together so he can stand on that leg?" "Why don't we take out that bone, twist it around, and bolt it back together with metal pins? We can put a cast on it until it heals in the correct position." "How about if we take out that muscle from his stomach and put it in his leg?" "How about we cram titanium rods into his back?" These are all things that John had done mostly at a very early age.

In fact, by the age of 12, John had had 24 surgeries. For those of you who might be arithmetically challenged, that's two surgeries a year on average. And these were not simple surgeries. This was not an ACL repair. No, these involved open heart surgery, brain surgery, and other complicated procedures.

The reason these surgeries were revolutionary is they allowed John mobility. They allowed him to walk. And after lots of physical therapy at the old Children's Hospital in Washington, DC, John did exactly that. He walked. He had braces on his legs and used two small half size crutches but he walked. My father who took many many photos in his lifetime documented it with his camera and wrote on the back of the photo, "John walks."

If you have not had a chance to see the photo, I invite you to take a look at it. John has his signature smile.

Through the years, I took many trips with John to Children's hospital for follow up visits. My mom would drive us through DC using her crazy back road routes. We snaked our way through the city with limited number of left turns. We would pull up to the hospital and an old guy there would say, "Hi Mrs. Rosen". And then we would get out and he would go park the car. It was not valet parking. There was just limited parking and this old guy would somehow magically squeeze everyone's car into tiny parking spaces. We took many trips to that hospital and many more to the new Children's Hospital in another location in Washington DC.  You might be tempted to say, it was a way of life. But it wasn't. It was part of our life but it did not define us. Our close relationships with each other, our adventures together, our family, was central to our lives growing up and John was a big part of it.

I remember elementary school vividly. When it was lunch time, I got out of class a little early so I could go get John and take him to lunch. I would go to his classroom and put him in a little red wagon and wheel him to lunch. We would eat together and then I would take him outside for recess where I would drive him around the playground. I was proud to be able to help my brother get around and it truly was the highlight of my day.

I remember one day when I was in sixth grade. It was recess and John was a little older and walking around doing things on his own. He walked up to me and my friend. Now John would want to make sure I mentioned who this friend was exactly. It was Jeff Rogers. John walked up and said he did not feel well. He knew something was terribly wrong. John about collapsed into my arms. Jeff and I rushed him to the nurses office. He was turning blue. It was very scary for John and for me. Ultimately, this was one of those occasions where John would have to have emergency surgery to fix a complication with his shunt. In this case, he had an infection where the shunt terminated in his heart. John pulled through this surgery with flying colors as he always did and continued being the positive inspiration to all of us. Life went on as usual.

I can remember spending time in John's room with him playing various games that children play. One very strong memory I have is the two of us listening to a Beatles album and playing air guitar and air drums. We would use tennis rackets as guitars. We would play through the entire greatest hits, singing along and rocking out. It was one of the many childhood memories I have of John and I - doing things together.

I remember eating grilled cheese sandwiches together after school while we watched Batman, Johnny Socko and Ultraman. It was part of our brotherly bonding. As an adult, John and Tom had similar bonding experiences watching one of John's favorite sitcoms, Everybody Loves Ramon.

As John got older and stronger, he was able to do lots of things that kids without disabilities do. John participated in games of 123 which was sort of like Kick the Can. We tossed the football around, we kicked the soccer ball around. Sometimes the neighborhood kids would gather and play baseball in the street in front of our house. We used a whiffle ball bat and a tennis ball. We got better action with the tennis ball. John would stand at home plate with one crutch supporting himself and the bat in the other hand. He got really good at the one handed whack and was able to hit the ball and get to first base.

John did a lot of the things that kids do. In fact, there is one story that is particularly telling in regards to John being a mainstream guy. At one point in John's childhood, after many summer nights of playing outside with his family and friends, he developed a pain in his leg. So of course my Mom took him back to Children's hospital to see Dr. McKay. Dr. McKay determined that John had a stress fracture in his tibia. And Dr. McKay literally did a happy dance around the office. That might seem and odd thing. But Dr. McKay realized that a stress fracture in the tibia from playing too much whiffle ball, and 123, and kicking the soccer ball around was not something someone born with an open spine typically encounters. John was active and was putting all of Dr. McKay's operations to the test. Dr. McKay was so happy that John was leading an active life.

And John continued this active life. My dad and John would play pool nearly every night. John always had a bike of some sorts. From the Hot Wheels plastic bike he had as young child to the custom imported Bob Jackson racing trike, John liked to get out and ride. Him and my dad rode often. And I remember one long ride we all took together many years ago. John rode his trike along with the rest of us from his house on Jackson Parkway all the way to Washington DC on the bike path. I figure that it is about a 15 mile ride. He rode the whole way under his own power. It was a pretty epic trip for him and probably the farthest he ever went in one shot.

Not only did John like participating in sports, but he loved to watch sports in person and on TV. He came to our soccer games. He watched Tom play, Erik, me, Melissa, Becky, and Emma. He was one of our best supporters. I remember when one of my coaches, Ernie Smith, asked John to be the honorary captain of my soccer team. Before each game at the coin toss, John would go out to the center circle in his uniform and call the coin toss. I was so proud of John, my little brother. I could not tell you much about those years playing soccer but I do remember John walking out on the field every weekend.

In addition to being our best supporter, he also like watching DC United, The Washington Capitals, and the Washington Redskins. He knew all the players names and their numbers. He even knew how to pronounce the names of all the hockey players-something that I could never do. John was great with names in general. I think he got that from my mom. He remembered names of professional athletes, actors, and most importantly friends and family. He had an uncanny ability to remember names and telephone numbers as well. I can still see my dad smiling and shaking his head in gentle surprise as John would recall from memory someone's phone number or address. Perhaps that skill served him well in his job at Navy Federal Credit Union where he worked for 25 years.

Sometimes going places with John was interesting. With all the hardware in John's body, he really gave the TSA problems. He would always set off the metal detectors at the airport. And then he would politely put his crutch in front of him and lean on it with his stomach and put his hands to his side while they scanned him with the wand. This was not easy for him but he did not complain. He simply did as he was told by the TSA and then when about his business. It was really no big deal to him.

Despite John's disability and all the challenges he faced, he was always positive and quick to smile. He was always concerned for other people beyond himself. John's day started like all of ours with him getting out of bed. This was not something that was super easy for him but he did it every day. It took effort. He got out of bed, he took a shower, he put on his socks and shoes and clothes. Something that we all take for granted. It was a struggle for him every day of his entire life but he did it and he didn't complain about it. He just did it. He showed up for life every day, always with a smile. Positive, loving, caring, John was an inspiration to me and many others. When I get down about this or that or I am struggling with something, I always think of John. He would soldier through any challenge head on. Often he did not have the option. He endured much physical pain throughout his life. But he always fought through it.

I can remember asking him once while he was in one of his multitude of casts, "does it hurt?" John gently nodded his head and said, "Yeah, but it will go away eventually." I ask you to remember John as the the inspirational person he was. When you are having a bad day or facing a challenge, remember John and how he faced all his challenges head on with a great attitude and a happy smile. John is really a role model for all of us. He cared about people and was always polite to strangers. Even when he was suffering in the hospital towards the end of his life, he always said thank you and please to his caregivers. When he did not have the strength to sip water out of a straw, I dripped the water into his mouth. He would always say, "thank you." And I always said "your welcome brother, I love you." And he told me that he loved me too. We will all miss John immensely. But his spirit will always be with us.

As some of you know, I train and compete in long distance triathlon. When I am struggling through the last few miles of a long day of swimming, biking and running, I will always have a leg up on my competitors. I will have John in my heart. His strength, his courage, his gratitude and positive attitude will always be with me. And at the end of the day, together we are unstoppable.

Please be thankful for all the many blessing you have in life. John was always thankful. We will never forget you brother. We love you and we miss you. May you rest in peace.

Vulnerable

So here I was a few days out of surgery and I was starting to put weight on my legs without the crutches. Melissa came home from work and insisted that I get out of the house. So we got tidied up and headed out to the Short Pump mall for some dinner at Tara Thai and some browsing at the big Barnes and Noble.

Melissa drove us to the mall. We got out of the car and started walking towards the mall from our parking spot. That is when it hit me. I was so vulnerable. I had to be extra careful watching out for cars and people. I was feeling a little anxious. I felt sort of helpless walking around amongst other people. It is not like the Short Pump mall is dangerous or anything but my whole adult life, I always felt pretty confident no matter where I went. I always had a great defense against wrong doers who might want to confront me for whatever reason. If someone wanted to bully me, fight me, intimidate me, or otherwise mess with me, they would have to catch me first. I have always had pretty explosive speed. I could go from resting nicely to running and jumping at full speed in an instant. I did not have to warm up or anything.

But now, explosive speed was not an accurate phrase to describe my current ability. As I made my way through the mall, I had to keep looking around and pick my way through the obstacles of the outdoor mall. I never thought of directories, trees, signs, thrash cans, etc as obstacles but that is what they had become.

It dawned on me that my brother John must have had this very same feeling his entire life. John was born with Spina Bifida. Spina Bifida is a birth defect. I have pasted in the Wikipedia definition of Spina Bifida.

Spina bifida (Latin: "split spine") is a developmental birth defect caused by the incomplete closure of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to stick out through the opening in the bones. There may or may not be a fluid filled sac surrounding the spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube which will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.

When I was a kid, we just said "born with an open spine." Nowadays Spina Bifida can be treated while the developing baby is still in the womb. But 40 years ago, when my brother was born, this was not the case. Most people born with Spina Bifida during this time period were confined to a wheel chair. However my brother was rebuilt. By the time he was 12, he had had 24 major surgeries. That is an average of 2 a year. And these surgeries were not arthroscopic knee surgery, thumb surgery, etc. There were serious, long operations. Open heart surgery, open head surgery, bones rotated, muscle taken from one part of the body and transplanted into another, pins in the bones, steel rods in the back, body casts, etc. After all his surgeries, John is now able to walk with a crutch and he works full time at a credit union in Vienna, VA.

John is an amazing dude. He has put up with so much physical pain but still has a great attitude and is a really nice guy. He wears his heart on his sleeve and is a very compassionate person.

Whenever I have been going through an injury or having a tough time during a race, I just remember how lucky I am. Even now, I can walk pretty darn well. I can balance on one foot. I can take my wallet out of my back pocket without having to lean on anything. I can easily pour a bowl of cereal and carry it downstairs with a glass of apple juice in the other hand. These seemingly simple things are not so simple for my brother.

Lately most of the pain I have in my left knee is experienced while dressing and undressing, taking my shoes on and off, getting in and out of the car, and other simple things. John has always worked hard at these tasks that most of us take for granted. And I have always remembered that fact during any of my injuries. One time when John was in his second or third body cast I asked him if it hurt. His response was, "Yeah. But it will eventually go away." I always keep that in mind.

But this trip to the mall after my surgery really struck a chord with me. John and I used to go to Tysons Corner and crowded movie theaters in Northern Virginia all the time. John would hold on to my belt loop as I lead him through the sea of people that are always out and about in Northern Virginia where I grew up. Young kids would often stare at him and his wobbly gait. Sometimes John would whip them a face that said, "what are you looking at, punk." These trips must have been a little stressful for John. I was confident that nothing would ever happen to him because I was not going to let anything happen. We were very close growing up and spent lots of time together hanging out, throwing the football around, and even kicking the soccer ball around. But looking back at it now after my trip to the mall, I never realized that these simple trips to the mall were probably not only physically taxing on John but also mentally exhausting as he had to navigate all the obstacles and deal with the feeling of vulnerability.

Well I did not last too long at the bookstore that night before my knees started hurting and I had to get back to my couch and my ice. But it was a great idea to get me out of the house and jump start my system with some anxiety. Sometimes a little anxiety can be ok.

Next time, I will give you some more details about my recovery and follow up doctors visits. Soon I will have you all up to date. I imagine that once you are all up to date, the vibe of the blog might change. Maybe not but possibly. I hope you will still stay with me through out. I already know that I have another great story to tell that is unrelated to my main topic but I will have to wait until the time is right.