My Son...Why all the pain?

Jeff and Olgie, July 2010

My Son...Why All The Pain?

"Mom, there is going to come a time, you know, there is going to come a time when I just won't be able to do it anymore."  We were on the phone again, as usual, in the middle of the night.  "Just so you know, no one will have to take care of me.  I will not be a burden on anyone."  I knew he was talking about saving us all mental anguish and emotional pain.  He was talking about down the road...his health down the road. He was letting me know he would take the initiative of ending own life if/when he could no longer handle this horrific life he was given.

This conversation took place in the middle of the night, which was our normal routine for our phone conversations, and right after he returned home from the fiasco of the Deep Brain Stimulus (DBS) surgery in Denver.  The year before, upon learning he had been diagnosed with Parkinson’s disease, I was determined to figure out a way to move to Colorado Springs, where he lived with his family.  My intentions were to move there to help.  He would not hear of it.  "Mom absolutely not, you are just now getting your life on track without Dad," he said.  Then he added, "There will come a time when Nat might need you...but now is not the time.  I want you to be happy.  I want you to date someone, someone who will make you happy.  That is also what Dad wanted for you.  I will not have you uproot your life now…maybe down the road if Nat needs you, but not now."  He was very adamant about this and would not even discuss it any further.

This was my son.  Jeff rarely complained about the cards he was given...don't get me wrong...he had more than his share of down days. Whom of us wouldn't be depressed if we were in his shoes?  His pain level exceeded all that are on the charts...He always had beads of sweat on his face.  Always.  When someone tells me now they are in intolerable pain I measure their pain against the pain Jeff endured...I measure it against the pain Steve endured.  I compare their facial expressions, their body language to the two men I knew suffered intolerable pain.  Body language tells the story of pain...I have witnessed this language from the men in my life.  I know this language well.

Jeff and I had many conversations about his health, about his wants, about his desire to become a viable human again.  It seems every time we turned around the doctors would fine something else wrong.  He was a medical anomaly.   Not even the best doctors could figure out why he had so many things wrong.  Jeff and I were exceptionally close, and he confided in me in all aspects of his life.  Especially after he lost his father.  Jeff, of all of Steve’s children, was the one child who absolutely adored his parents.  'Adored.'  This is a very big word.  This is how Jeff felt about both Steve and I.  Jeff idolized us, had always put us on a pedestal, and accepted us as we were.  We talked daily…daily, until the last couple years when he started getting more and more ill.  And then our talks dwindled down to several times a week due to his pain levels.  I always knew when his pain levels were higher because he just wasn't able to talk.  I came across this email dated 2008…2008...pre-Parkinson's, pre-Croans, pre-everything...during this time he was only dealing with this very bad back, and Rheumatoid Arthritis.  In this email he had been dealing with excruciating back pain and was looking forward to another disc fusion.  I remember we thought it was the last surgery to getting him better...

  It was during this time we thought all his pain was from his back...he was getting geared up for his second back fusion.  Even though the first fusion in his lower back did not work we had no choice but to continue with his upper spine.  Jeff knew something was wrong...he could not pinpoint it...but I think he knew even then, that it was more than just his spine.  Little did we know...I look back now and see how very ignorant we all were...even his doctors!  

As time went by Jeff still was not anywhere near as well as his doctors predicted.  Nobody could figure out why  he kept falling.    No one could figure out why his body would stiffen up.  His Neurologist and all the rest of us just assumed his surgery resulted in nerve damage causing his falls.  Falls which would leave his body with many injuries.  Falls that often had him falling down stairs, leaving his ankles, knees, and a shoulder so beat up they were in need of surgeries.  Many of our conversation revolved around his pain levels or his most recent diagnosis.  I could always tell when he was having really bad days because he would try to avoid me so that I would not know how bad he was doing.  If I called he would answer, “Mom I’ll call you later, busy right now.”  But he couldn’t hide the pain in his voice.  He couldn’t hide the way he had to breathe just to get the words out.  I knew, I knew when his pain was unbearable.  I learned to listen for all the signs.  He was my son, he was my light.

Jeff left our home at 17 to go live and train at the Olympic Training Center in Colorado Springs.  Steve had 11 children, eight from his first marriage, two from his second marriage, and he and I had Jeff together.  Jeff was the youngest of Steve's 11 children.  Shortly after Jeff moved out Steve decided it would be cheaper to get an 800 number for Jeff, who was not afraid to call home collect at every chance he had.  Middle of the night, middle of the day, it didn’t matter…and it didn’t matter to us when he call or how he called, as long as he called.  Steve gave this same number to all his other children.  The other children rarely used the 800 number...but Jeff...Jeff used it freely and frequently. He was proud that he was the only person he knew who could call home anytime he wanted, using an 800 number.   Keep in mind these collect calls were pre-anytime minutes and pre one-price-fits-all.  Jeff called every day, several times a day.  He adored his parents, and was not ashamed of us in anyway, he didn't bother him that we didn't drive the fanciest cars, nor live in the fanciest house.  He was not embarrassed to let everyone know he loved us.  He was the youngest child, he was spoiled, and proud of it!

That night when we were talking, I knew...in my heart this conversation was coming.  I had prepared myself for this conversation for a while now.   I knew when he was ready we would openly talk about his end of life wishes...he was talking about saving us all anymore pain watching him suffer.  I knew my Jeff was contemplating, or at the very least, thinking about a solution to his pain.  But I was not concerned...because I also knew Jeff would not do anything without giving me advance notice of a concrete decision.   At this time he wanted me to know he was thinking about it...the possibility or rather, more likely the probability his health will spiral somewhere down the road. I was not worried that day.  There would no doubt come a time when he would be ready, but not this day. 

A few months prior he had undergone Deep Brain Stimulus (DBS) surgery.  A surgery which his Neurologist told us would change his life.  (Wow...this was the third surgery that was suppose to 'change' his life!)  This physician was one of the best in the Denver area who had already had all successful outcomes in performing DBS surgeries.  This surgeon as Jeff put it, “Obviously has a huge ego due to his 100% success rate.  He’s a little man with a large ego.  You know the type; he talks loud so everyone can hear him, and he probably drives the biggest truck in town, so everyone knows he is successful.  

Jeff said, "I am going to get my life back once this surgery is over.  Who cares if he (the surgeon) comes across as a dick, as long as he can get the job done, right?”  Natascha thought the surgeon was a very brash individual who had no empathy…no bedside manners.   She did not care for this man right from the get go.  Due to his success rate Jeff decided to go ahead with the surgery.  Isn’t this a choice we would have all made?  After all Jeff had been in the care of countless other physicians, Pain Management physician, Rheumatologist, Gastroenterologist, countless Neurologists (some for his back, some for his Parkinson’s), Sleep disorder physician, and on and on.  After talking to several of them they all agreed that this surgery was indeed needed, and this chosen surgeon was the best man for the job.  

This 'miracle surgery' that started out as a promising surgery, ended up being a horrible nightmare.  The surgery was aborted mid-stream due to Jeff having seizures during surgery, (or at least that was what we were told at the time.)  This surgery ended up with Jeff nearly being given a medication which would have been very harmful to him…during this surgery Jeff was awake and was interacting with his physicians.  He heard the anesthesiologist order a medication for him, and Jeff reminded the doctor he was allergic to that medication.  He was wearing a wristband which clearly stated the medication to which Jeff was allergic.  (Jeff and Natascha told me way later that when he came out of anesthetics he could not make words.  Jeff said he could make the words in his head but all that came out of his mouth was garble. Absolutely nothing was coherent.  After some time he was able to talk…no one in the hospital could explain this.)  

After the surgery, Jeff kept complaining about pain in his chest, big pain.  Everyone ignored this…it turned out the IV which was position in his chest was not inserted properly and the medication was filling up his chest cavity. It was the next day when they finally found the solution they changed the IV to Jeff’s wrist.  A new surgery was scheduled for a few days away.  Meanwhile Jeff complained about a medication which was given to him in the IV…again he was ignored.  Jeff’s wrist started showing signs of an allergic reaction.  Again something was wrong with the IV and Jeff suffered a severe allergic reaction to the seizure medication given to him.  This medication also left his wrist completely full of rash, and left Jeff unable to get better.  With the new change of medication Jeff started showing signs of fever, and the surgery scar in his head started seeping/oozing blood.  Signs which were ignored…again.  (Everyone told us it was due to Jeff moving about too much.) The surgery was aborted the night before the new scheduled surgery because Jeff’s fever would not go away.  Tests continually came back negative for infection.  With the aborted surgery, and now  rescheduled surgery canceled they sent Jeff home even though he still had a low-grade fever, saying there was nothing to worry about.  At this point he had been in ICU for a week.

We were all happy to have Jeff home again.  A day or two later when I was to fly home, Jeff told me Nat and the kids would take me to the airport…he said he was not feeling well and he still had a fever.  He did not want me staying any longer because he knew I needed to get back to Idaho to work.  When I got into Salt Lake City I had a message from Nat on my sell phone, Jeff was taken to Denver via ambulance.  Nat and the kids were on their way back to Denver.  The fever…that would not go away…was due to a brain infection.  An infection that only affects a certain population of people.  The population that gets this infection…’newborn babies.’  Apparently, this infection that derives from a Mother's womb, somehow infected Jeff’s brain. He was in ICU a few more weeks. (I found out later while we were on route to the airport Jeff drove himself to the hospital.  He knew he was ill, he just did not want me losing my new job which I had just started two weeks prior to his DBS surgery.  Had he not taken himself to the hospital, the infection could have killed him.  He ended up being ill with that infection for many months. 

“I understand baby,” I said, “If there comes a time…I will be here for you.  I know you are worried about Nat.  I know you don’t want Nat getting stuck with an invalid.  I know baby.  Let’s just see what happens down the road.  Meanwhile let’s wait and see what happens…perhaps you should talk to another neurologist.” 

“I am not sure what I am going to do now…pretty much, if this F’r screwed me over in surgery…I am screwed.  As it is due to all this shit, I am going to have a heck of a time finding a new Parkinson's specialists.  All I know right now is he (the surgeon) is not returning any of my calls.  Hell, he didn’t even come back to the hospital when I went back  there for the infection.  What does that say?” 

I could clearly hear defeat in Jeff’s voice.  I knew deep down that the aborted DBS surgery was going to be an issue down the road.  I knew it would end up being a nightmare.  The outcome of the surgery would eventually show itself down the road.  I knew that very night of the abandoned operation, Jeff contemplating suicide, would eventually become a very real issue...an issue we would eventually discuss.  Who the hell could blame him?  He had just emerged from what was supposed to be a miracle surgery (his third miracle surgery) to what?  A straight-up absolute nightmare!   

The year prior to Jeff's death he found a Parkinson's Neurosurgeon who would be willing to take his case. This doctor was to do very extensive tests 'so there would absolutely be no surprises' during the surgery.  They scheduled a new DBS surgery date, and meanwhile a barrage of tests were done on Jeff.   The surgeon called Jeff and Natascha in to discuss the results of the tests.  Jeff found out he may not have had seizures during the initial DBS surgery…he found out later that the aborted surgery may have been cause by…God only knows what.  He found out that even though the first surgeon went through with the DBS surgery…he, Jeff, may not have had Parkinson’s at all.  The surgeon also told Jeff, "I have cancelled the surgery because I do not think you have Parkinson's disease.  I am not going to tell you what I suspect I found from all these tests because I do not want you to go home and google my suspicions.  There is no point in getting upset if I am wrong.  The doctor scheduled for Jeff to meet with another Neurologist who specialized in movement disorders. 

This new Physician told Jeff, "Before I take your case, I want to study all reports, results from all tests, x-rays, etc., from all physicians, surgeons, hospitals for the last 10 years before I will give you a consultation."   Jeff had been in the hospital a thousand times in the last 10 or more years, under the care of just as many physicians, and had radiological test done multitudes of times yearly.  This all too consuming task was probably more than Jeff could even accomplish.  Every time we talked he would tell me he was able to get more reports sent to this doctor.  He had dug up thousands of paperwork, multitudes of x-rays, and thought he was done or nearly done getting the information for the surgeon.  And now...we will never know.  All we know for sure is after the DBS surgery, Jeff's health spiraled downhill.

Jeff A. Castillo 9/2/77 - 3/11/13

Over the years time and again, he would be diagnoised with a disease, and then a year or two later we would hear, "No we don't believe he has 'such 'n such' disease.  We believe he has (whatever the new diagnosis is).  Ever since he was a baby we were told...he has Spinal Meningitis...he has Typhoid Fever...he has 'whatever.'  And then they would say...oh we were wrong he does not have that, he has this (whatever the new diagnosis was).  I remember when he was a child and he was infected with Chicken Pocs...he was absolutely clobbered with this infection.  His doctor said, "I have never seen a case this bad."  

I remember when Jeff was in Jr High one of his coaches said, "He is the nicest young man but his face never shows expressions.  It is like he is apathic, but I know he isn't."  

Face Masking...(face that shows no emotions, always looks mad) is another early sign of Parkinson's.  This was clear back in Jr High.

What the hell!!!  Was it the initial 'miracle surgery'? Had Jeff finally reached a point where he just could not do it anymore?  Had his body just reached a point where it could no longer function with all the toxins caused by the hundreds of medications he had been given over the years.  Did he just will himself to die?  Did his body just say enough?

And now he is gone...why?