Interview part 1…

So for today’s post I wanted to interview my older son and get his view on it all. I sat down with him this past Sunday and asked him some questions. I’m planning to have the next two posts devoted to this interview.

My older son, Christian, before our interview on Sunday
My older son, Christian, before our interview on Sunday

I asked him a few questions to warm him up:

Me: So what is your name?

Christian: Christian

Me: and what is your birthday?

Christian: December 25th, of 2006

Me: So tell me, what do you know about what happened to dada and his surgery?

Christian: I know that it was a tumor

Me: And where was the tumor?

Christian: In your head.

Me: And what did they have to do?

Christian: Cut your head open.

Me: What did they do to the tumor?

Christian: Took it out.

Me: Do you know how long it took?

Christian: About 2 years or 1.

Me: Do you remember that dada was in the hospital after?

Christian: I remember you lying there like this. (He makes an impression where he stiffens his arms by his side and stared at the ceiling without blinking).

Me: Do you remember being at home with mama a lot?

Christian: No, not that much. I went home with grandma and grandpa

Me: What do you think caused me to have the tumor?

Christian: That you ate too much in the night and you didn’t eat enough during the day.

Me: So you still think that?

Christian: I think that you eat too much sugar.

Me: What do you think now when I see your friends or go to your school and I walk and talk funny? Does it bother you at all?

Christian: No.

Me: Do you remember me before?

Christian: You couldn’t walk, oh you mean before the surgery…You played tennis, that’s it. Now you do much more work than before.

Me: So you said before that I couldn’t walk, what did you mean?

Christian: You couldn’t walk in the surgery.

Me: Do you think dada’s changed at all after the surgery?

Christian: Yes.

Me: How?

Christian: [You’re] not wearing an eye patch.

Me: Anything else?

Christian: No.

Me: Does it make you upset that I can’t play soccer and basketball with you?

Christian: Yes.

Me: How do you think mama’s been through all this?

Christian: She’s been regular.

Me: What do you think about dada going back to work?

Christian: In 2 years [from now].

Me: Whose fault do you think the tumor is or do you think it’s anyone’s fault?

Christian: No one’s, no the tumor’s fault.

Me: But you said I ate too much sugar before, so do you think it’s my fault?

Christian: No, I think there’s too much sugar in your brain.

Me: So you know that this isn’t your fault and it has nothing to do with what you did right?

Christian: Yes, I know that it’s not my fault[1]

 

[1] A fantastic article by Bharadwaj et al. titled “Talking with Children About a Parent’s Serious Illness” found in the November 2013 issue of the American Family Physician magazine instructs parents to keep harping to their children that the illness is not the child’s fault.

Titubation part 3…

—————– The Science Behind It ———————-

As I mentioned earlier, for the most part I have done little scientific research on my tumor. This has been deliberate as I feel that reading on this tumor would be fruitless and only cause unnecessary angst. This is not the case with titubation. I have done several literature reviews and research of the topic, in hopes of a. understanding it better and b. perhaps alleviating it. Unfortunately, most of the data on it has to do with patients afflicted with Parkinson’s.

The National Institute of Neurological Disorders and Stroke
The National Institute of Neurological Disorders and Stroke

Tremor, as defined by the National Institute of Neurological Disorders and Stoke, “is an unintentional, rhythmic muscle movement involving to-and-fro movements (oscillations) of one or more parts of the body.”[1] Many times in the field of medicine, students and clinicians often ask ‘what is the pathophysiology?’ This is just another way of asking how something works.[2] The pathophysiology of tremor is poorly understood. One theory postulates that in many patients with tremor, the cerebellum is somehow involved, which fits my case, as my mass was very near the cerebellum, in fact pushing on it. There are various ways to treat a tremor, with the most often used modality being medication. Implantable devices have also been utilized in the past. In my case, I did not want to take any medications, and a procedure to implant a device was out of the question, thus I opted for a ‘wait and see’ approach, in hopes of it resolving itself.

——————— Now ———————–

https://www.youtube.com/watch?v=SjIJVmSq5Xo
In preparing for this post, I contemplated shooting a video of myself having one of these episodes. Then on YouTube I searched for ‘titubation,’ which returned nothing. My subsequent search for ‘head tremor’ returned a video clip of an elderly woman as shown above.[3] I must admit that watching the video brought on a flood of emotions. At first I thought, this is perfect. This is exactly what I’m going through. Then my thoughts progressed to this poor woman, the tremor almost looks painful. I wondered what it was that caused her to have this, with Parkinson’s Disease being my first thought. I wanted the tremor to stop; I wanted the clip to end. Even through a computer screen I felt uncomfortable. Then I caught myself—I was reacting as others do when they see me go through this. How could I expect anyone to react any differently if I, someone with the same affliction, react the way I do. That made me realize, that this titubation cannot be controlled; at best, now I can quell it.[4] What I can control is my own response to it. This is why when it now occurs, I try to take several deep breaths and attempt to enter an almost meditative state; I am not trying to stop the tremor, but hoping to clear my mind of any negative thoughts when it occurs.
You may wonder what, if anything I have taken away from his titubation. Well, I still struggle with it occurring, and am embarrassed by it. But at the same time, I have come to embrace it. It still happens with some frequency, not really improving but not worsening either. The most interesting part of this is the reactions that it garners. Some choose to completely ignore it, while others choose not to ignore it and ask me questions like, “Are you okay?” It is for this reason that my recollections of each episode center on the reaction to it. There is not one reaction that I prefer, although my only hope is that it does not cause the other person distress. In reality, my ultimate hope is that it goes away and never returns, but I have accepted the fact that this may be permanent. I suppose that I have not closed this chapter in my recovery but I hope as this continues I become more accepting of its occurrence. I will not lie to you and say it has no effect on me. On the contrary, I’m still embarrassed by it and I still wish it to be gone. But I now have come to accept its presence in my life, not in a defeatist way but in a patch-of-honor way. Every time it occurs it serves as a reminder of what I have been through. If my hair hides the scars, my speech returns to normal, and my gait no longer reveals my disability, will the titubation be gone as well? If all this is gone then will I be left with no reminders of this struggle?
[1] http://www.ninds.nih.gov/disorders/tremor/detail_tremor.htm
[2] For example, the simple act of breathing, is studied intensely in medical school, with countless numbers of equations and principles behind it. This, and other processes, are studied most in a course called ‘physiology’. A later course in medical school is pathology, which comes from the Greek word pathos- which means disease or suffering.
[3] I included this video in a previous post.
[4] As I mentioned earlier, it rarely occurs when I stand up, thus standing up and walking around seems to lessen the severity of the episode.

Titubation part 2…

———————————— Family ————————————

My mom and step dad are now mainstays at our house, visiting from Chicago every week. They help with driving, child care, cooking, basically everything.  I like to warn those around me of this ‘head shaking,’ so they’re not so taken aback by it when it occurs.  I remember both warning them and their first encounter with it.  We were all in the car on the way to a restaurant when I turned to my son and said, “Remember daddy’s head shaking?  It might happen in the restaurant.”  (I was essentially addressing the whole car, not warning just my son).  It did not occur in the restaurant but it did start when I sat down for dinner with them that night. These days, it happens basically every time I sit down to eat.  I remember this being a particularly bad episode, with the shaking being more vigorous and lasting longer as well.  My son, who was used to it by then even mentioned it, “Dada, your head’s really shaking.”  I stood up from the table and left the room, hoping to quell the episode and also feeling embarrassed by the shaking.  My mom’s reaction was first to ask me if I was okay.  When I told her I was fine and that it would pass, I heard her then say to my stepdad, “I’ve never seen this before but it seems really bad.”  The next day I was doing some of my daily iPad programs[1], and my mom was out, leaving me with my stepfather.  I was doing a program called “Glowburst,” a game that asks you to order numbers from lowest to highest.[2]  My stepdad wanted to see the game and how I would fare.  He was impressed by my speed, enough so that midway through the game he motioned to my wife to watch, by subtly nodding his head along with a raise of his eyebrows.  It was at that time that my head began to shake.  I finished the game, but was not happy with the result.  I said something to the effect of, “I can do better than that,” and got up and left the room.  From the other room I could hear mumbling between my stepdad and wife- I could not make out the conversation, but I’m sure it centered on my latest display.  To this day, I am not sure whether that episode was triggered randomly or by my nerves at seeing my stepdad nonverbally telling my wife to watch my performance.[3]

In December of 2013 my little sister, Alice, underwent back surgery at Allegheny Hospital in Pittsburgh, as she was suffering from back pain due to severe spinal stenosis.[4]  I decided that I would surprise her and join my parents in their drive to Pittsburgh to see her[5].  After seeing her I warned her in the hotel lobby, “Alice, I’ve been having this thing happen to me. At random times in the day my head will shake.”[6]  It was at the hospital at the end of her pre-operative physical that she witnessed it first-hand.  We were waiting for the hotel shuttle to arrive when my head began to shake.  She immediately noticed and was concerned.  She got up and came to me and said, “Is this the shaking you were talking about?  Let me try something.”  She then began to rub my neck.  Unfortunately, that did not work as my head kept bobbling.  I could see her distress at seeing the titubation.

Allegheny Hospital-in downtown Pittsburgh
Allegheny Hospital-in downtown Pittsburgh

About a month later I visited both my father and my older sister, Amy, in San Diego.  Flying there proved to be an ordeal, but I’ll discuss that later.  Neither my sister nor my father had witnessed my titubation episodes yet.   I had warned them beforehand over the phone, but I knew that hearing it described over the phone and seeing it in person were completely different.  My dad had scheduled a Urology conference there and figured it was a good time to see me, my sister, and her three children.  When I arrived in San Diego my father and I went to eat at a local restaurant.  We decided to eat outside, as the weather was nice and warm.  We began to discuss his studies in Taoism and Tai-Chi, both of which he had devoted his life to.  He said to me that he had hoped I would one day write a book on Tai-Chi and its effects on health.  As he was telling me this, my head began to shake.  My dad at first did not notice, but the shaking became vigorous enough that he commented, “Is this the shaking?  That’s okay, just ignore it.”  He then went on about his thoughts on the ancient art of Tai-Chi.  Throughout the trip, I would suffer from episodes of titubation every time we sat down to eat.  His reaction to it each time was the same “It’s fine, just ignore it,” and, “It will pass.”  When I spoke to him of the titubation, he would always tell me to ignore it and that it would pass.  In his eyes, as long as it did not occur in certain situations, like when I’m behind the wheel[7], it would have no detrimental consequences.  To him, it was a symptom that was out of my control and thus not worth fretting over. 

I mentioned earlier that I had an older sister in Long Beach Island (LBI), in New Jersey.  I also mentioned that she and her husband were not happy in LBI and were looking to move.  Well in January they both found work in an Emergency Department in San Diego and had subsequently moved to Carlsbad (a suburb just outside of San Diego).  My sister and her husband had also had their third child recently, whom I had yet to meet.  Thus, once I touched down in San Diego I called her to arrange a time to meet.  She immediately suggested that I spend the night there.  Her husband, Amir, a fantastic cook, always prepares me salad and steak when I visit them.  I remember that I was sitting down to eat one of his patented meals when my head began to shake.  By then, I had become attuned to the shaking, enough so that I could feel it coming on.[8]  I was worried, more than before thinking thoughts like, what would they think?  Would it be a bad episode?  I’m not sure why these thoughts crept in to my head as I had gone through this countless numbers of times.  My sister and her husband tried to ignore it; however they were both clearly put off by it.  I remember asking my brother in-law a question to which he responded, “what?”  Even though my speech is delayed and often difficult to understand I could tell that this instance was not a simple case of not understanding.  The titubation had thrown him off so much that he did not even hear my question. 

The next morning Amy approached me and said, “Chris, this titubation thing really worries me, so I emailed Dave about it.” (Dr. David Jho is a neurosurgeon friend of my sister’s who has provided us with priceless medical advice throughout this ordeal.  He was also the surgeon in Pittsburgh who operated on my younger sister’s back).  His response to her was that this sometimes occurs after midline brain surgeries and is art of the surgical recovery trajectory, resulting in the shaking.  He also added that the symptoms can last for up to two years, and that it could take that long to determine if it’s permanent.  My sister’s and my reaction to this were completely different.  My sister was relieved that Dave had at least seen this before, and that it could go away.  I, on the other hand, had not yet entertained the possibility that this could be permanent or that the symptoms could last for up to two years.

Dr. David Jho- neurosurgeon
Dr. David Jho- neurosurgeon

You may wonder why I did not include my wife or older son in the discussion of this titubation.  The answer is simple; I do not remember my first experience of titubation with them.  My reasoning for this is that I have a level of comfort with them that I do not even notice when it occurs when I’m with them.  It’s akin to having it when I’m by myself, I do not notice it at all.

 

———————————– Friends —————————-

While the apprehension I get when I feel the onset of the titubation with my family is high, I get even more nervous about it occurring when I’m around friends.  Again, I attribute this to the level of comfort with my friends versus family. (For example, I would rather it happen around friends than a stranger I just met).  This is one of the reasons I try not to leave my house. My nightmare would to be in a public place with lots of people and to have the shaking begin, causing everyone to stare. 

Thus, I have managed to avoid these situations by essentially becoming a recluse.  However, there are certain instances that stick out in my mind.  The first occurred when I was having a check up with a local neuropsychologist.  I had just undergone extensive testing through them (IQ tests, motor tests, etc.) and this visit was to discuss the results and my possible return to work.  I was incredibly nervous.  When we sat down my head began to shake vigorously.  I vividly remember this clinician stopping midsentence and asking, “are you okay?”

“It’s fine,” I replied, “just a tremor.”

“Well, make sure to tell your doctor.”  I could see the discomfort in her eyes- this was no doubt a rare phenomenon, not one she was trained for or possibly even seen.  She was clearly thrown off by it and I could tell.  I remember leaving that encounter angry, not angry at the news given to me (she told me at that visit that while my memory was actually above the average, she thought my attention and motor skills had taken a big hit.  Enough so that she thought that me returning to work at that time was a bad idea), but angry at the way she, a professional clinician, had reacted to the titubation.  Every episode of this has caused me great embarrassment, however this was the first and only time (to date) that this caused a mix of embarrassment, shame, and bewilderment in the person I was with.  What made this worse was that she is a professional who spends her days in encounters.  Perhaps not like this one where the patient’s head bobbles and shakes vigorously, but encounters with patients with psychological issues. I would hope her training would have prepared her for situations like this, or at least increased her sensitivity towards others. Unfortunately, I was wrong. 

Another instance I remember is one with a close friend and colleague of mine, Kyle.  The winter of 2013 in Lansing was a particularly bad one, one that left us without power for almost a week.  Luckily for us, Kyle’s sister, also a friend of mine and former colleague had both power and a room for us to stay in.  Kyle was also without power and subsequently stayed with his sister.  The reason this is relevant is that for that week both Kyle and I were in the same house.  One night, Kyle decided to watch a movie and have dinner with us (my family and me).  We decided that in order to do this we needed to go to the local grocery store to get the dinner and movie.  I did not want either of my sons or wife to have to be outside in the cold, so I decided I would tag along with Kyle.  During the drive there my head began to shake.  I had not warned him of this beforehand, so I was curious to see his reaction.  He completely ignored it that initially I was not even sure if he noticed.  By the end of the drive, with my head shaking, we had carried out a conversation without any mention from him about the shaking.  We have not spoken about that car ride since, so to this day I do not know if he noticed or not.

The last instance that comes to mind occurred during one of my physical therapy sessions.  After leaving the hospital’s Rehabilitation Floor I was referred to a physical therapist who had had previous experience with brain injury patients.  I began by going to therapy five times per week.  As I mentioned earlier the titubation does not occur when I stand, thus with my therapist, Cheris Grasse, as I’m always standing for our sessions, had never occurred in front of her before.  However, this particular session was different in that she was required to perform a re-evaluation.[9]  Normally, in my sessions with Cheris we go from one exercise to the next, with no breaks in between.  Due to the re-evaluation there was some downtime in between the tests.  Some of this downtime involved me sitting.  Like clockwork, after sitting for a minute or so, the titubation began.  Both Cheris and I were surprised.  Cheris because she had not seen this happen to me before.  I was surprised because in the previous nine months of therapy this had not occurred there before.  I would describe her reaction to the titubation as concern for me.

trim.EFB54944-8B03-4988-A5B5-FF5ED936E12C

Having gone through this symptom for almost a year now, my reaction to it has evolved.  Initially my reaction was more introspective worrying about the titubaton itself and what it meant to my health.  Now my focus is more geared towards the reaction of the people around me.  To me it is interesting to see how the different people in my life react to it.  As my father said, the symptom is out of my control, I can’t stop it, I can only (maybe) quell it.  My ultimate hope is that the titubation resolves and goes away, but if it does not perhaps my thought on it will evolve more.


[1] I had been given some programs to do by a local therapy business, programs like Vision Tap, designed to train my cognitive abilities, motor skills, and vision tracking.

[2] The game gives you a screen with bubbles of floating numbers, as well as a countdown timer.  For example the numbers ‘0, 17, 5, 33’ are given and the object of the game is to hit them in the order of ‘0, 5, 17, 33’.  There is a time penalty for hitting them out of order.  Also as the game progresses, more and more numbers present on each screen and negative numbers are introduced.  I measure my progress as round attained.

[3] My stepdad still claims that, because of this episode, he believed the titubation to be triggered by intense focus, which I disagree with.

[4] This is a condition in which the spinal canal is narrowed (typically either by trauma or as a result of a birth anomaly) compressing the nerves contained in the spinal canal.  The symptoms of this can vary from completely painless to crippling pain.

[5] Pittsburgh is about a 7 hour drive from Lansing.

[6] I still could not eloquently describe it.

[7] I had not told him that it has never occurred when driving, however if it did I had planned to pull over to the side of the road until it passes.

[8] The problem is that once I feel it coming on there are no maneuvers that I have discovered that can stop it.

[9] I am essentially run through a battery of tests to gauge progress.

Titubation part 1…

Imagine having to carry around a sign in your pocket that says “Look at me” and at random times in the day having to take it out of your pocket and put it around your neck. You also have to put this sign around your neck when you’re nervous or tired. Beginning in the late summer of 2013 my neck began to tremor causing my head to shake like a bobble head toy. At first, I thought nothing of it. I barely noticed it because it happened so rarely. Then, it became more and more frequent. Initially, it would occur once every three days. But then once every three days became once every other day, then daily, then multiple times per day, and so on.

How I feel when this occurs
How I feel when this occurs

———————— Now it has a name ———————————— In the fall of 2013 I was at one of my scheduled appointments with my neuro-ophthalmologist, Dr. Kaufman. With all doctor’s visits there’s a point in the visit where you’re asked, “Do you have any concerns?” We’re trained to ask that, as most patients go into a visit with a specific issue in mind they want addressed. There have been instances where I would forget to ask this, and invariably as I’m about to leave the room the patient adds this concern to the visit. It can be something as benign as “Could you refill my blood pressure medication? I’m running low,” to something as serious as “I meant to tell you Doctor, I’ve been feeling this sharp pain in my chest for the past few days.”[1] It happens so frequently that we have a term for it: a doorknob question. Typically when I’m asked this as a patient, my response is “no”. But this time was different. When he asked me this (which he did because he’s a very good physician), my reply was, “Actually, yes. For the past several months my head randomly shakes.” He then tested some of my eye movements in an attempt to elicit the shaking. Luckily, for both of us, his attempt was successful and the shaking began. “Oh yes, I see it now. Tell me, when does it happen?” Even though the shaking was becoming more frequent I hadn’t yet began thinking of propagating factors. “Do you notice it when you’re nervous?” After thinking about it, I replied, “Yes, in fact I do.” “What you’re experiencing is something called titubation. I can prescribe you some medication and I know someone in town that sees patients that have this.” I try to avoid taking any medications, even over the counter medications, if I can avoid it, which is ironic as part of my training is in the field of pharmacology, the study of medications and their effects on the human body. But because of this aversion I declined his request (I anticipated that this referral would ultimately end with the movement disorder specialist offering me medication). “I think I’d like to see how this plays out before I take anything,” was my reply to his generous offer. The symptom now had a name. Prior to this I had simply referred to it as ‘head shaking’. In my mind, this was progress, the fact that it had a name meant someone before me had gone through this before. The optimist in me hoped that this titubation would go away by itself, sooner preferably than later. Unfortunately I was wrong.

———————– Progression ——————————–

My hope was that this titubation would spontaneously resolve itself. In the next few months, instead of resolving or even improving, it actually worsened. Already being a very self-conscious person I abhorred anything that brought attention to me. That is one reason this whole ordeal has been so tough for me- -seeing a 6’2 Asian guy with scars all over his head already screams for attention. Now on top of that add an incredibly odd gait and delayed speech. I’ve always been very aware of being looked at even before the tumor was found, and now with the after-effects of the surgery these looks became amplified. It took a large effort on my part to learn to ignore the stares and to come to the realization that I will be looked at for the rest of my life. The problem is that I had come to terms with being stared at due to my odd gait and delayed speech, NOT my head bobbling. For me, this was a separate issue; my hope is that ultimately this resolves. I envision myself two or three years down the road speaking and walking normally. Hoping this was difficult but not impossible given the words of the neurosurgeon himself.[2] From all my readings it may be temporary but many articles also state that it also may be permanent. The possibility of this affliction being permanent is hard for me to think about. People seem more put off by the head shaking, even more so than my abnormal gait and speech. The episodes became frequent enough that I decided to log them, keep a titubation diary. It’s ironic, I tell patients to keep diaries all the time. If a patient were to come to me complaining of headaches before pedaling medications I would encourage them to first keep a headache diary and to document items like when the headaches occur, what time of day, and how long it lasts. If a diabetic sees me for high blood sugar readings I always tell them to keep a blood sugar log, detailing their blood glucose readings, date and time of those readings and what was eaten before or after the readings were taken. I often have patients that tell me that they are worried about their weight. My first action is typically to ask them to keep a food diary- a log of every meal and what was eaten. These logs not only provide me a source of information but also prove beneficial to the patients themselves; it allows them to tangibly see or decipher any possible patterns. Here is an example of my thought process as I scrutinize these logs: Let’s see, this diabetic patient’s food log shows that at 8pm every night before bed he has a candy bar. My first course of action would be to try and cut out this habit and see how his sugars respond.[3] This titubation diary did help me. I extrapolated a few patterns from it: The titubation occurs in three situations: 1. When I’m under any duress 2. When I’m fatigued and 3. Randomly The titubation does NOT occur randomly when I am standing, BUT fatigue and duress will trump standing every time. In other words, if I am nervous, simply standing up does not stop the titubation episode. It also does not occur when I am driving. It is the effect it has on those around me that I still have trouble getting past, which I plan to discuss in the next post.

http://www.youtube.com/watch?v=SjIJVmSq5Xo

This is a great video depicting the titubation.  I considered taping myself during one of the episodes but decided against it, especially after seeing this clip and realizing how close it resembled my symptoms.

[1] Because of the seriousness and reversibility of a heart attack (we call it Acute Coronary Syndrome or ACS), chest pain is not a complaint we take lightly. When I say reversible, I don’t mean there’s a magic pill that can stop a heart attack, but once it is discovered specialized cardiologists can intervene to ‘clean’ the affected artery(ies)

[2] He tells me at every visit that he expects a full recovery.

[3] Unfortunately, not all cases are this straight-forward– in this case what would probably happen is that even with this lifestyle change his blood sugars would remain persistently high, at which time I would change his insulin dosage

Recovery part 2…

——– Like Me ———-

I have been shocked at the number of people that have told me that they have a loved one that was recently diagnosed with a brain tumor. One of the Case Managers of my insurance company said to me during our first conversation, “I probably shouldn’t be telling you this, but my husband was also recently diagnosed with a brain mass that was thankfully benign, but he also had to have surgery to take it out. His recovery process has been long but he’s back to a 100% now.” Whenever I speak to her today I ask how her husband is doing. Our nanny, when she learned of my condition sent me this email: Holy $*!t Chris! I went through the same thing with my sister in law. She had a full recovery. We now make fun of the crazy things she would say after the surgery but that was easily the hardest thing I’ve ever sat by and witnessed. Her vision was the slowest to recover but she is now able to drive and leads a completely normal life. She just got married last summer and is planning a family. I send all the good vibes I can out to all of you. I know it is a difficult process and extremely frightening. What a year you guys have had. You’ll easily be some of the strongest humans around given that saying… What doesn’t kill you will only make you stronger. And a new baby too. Incredible. All my best! I also learned of a Michigan State University surgeon who went through the same type of ordeal as me.[1] Apparently she too suffered from a benign brain tumor that had to be excised. I have been in contact with her. She no longer performs surgeries due to the residual effects of the tumor but still continues to see patient.

MSU Logo
MSU Logo

Prior to this, even in my days in the clinic, I had never come across a patient with a brain tumor. I had seen them in case studies but not in practice. It is for this reason I assumed I was alone in my situation, but to hear so many different people that have gone through my similar ordeal made me both sad and comforted. Sad that other people had to endure this, comforted in that I wasn’t alone.

————– Mood —————

One aspect of my recovery that my mother worried about the most was my psychological well-being. She is a smart woman and knows that the physical effects are being worked on already through various modalities (therapy, pool work, weight lifting, etc.). But to her, one of the worst conditions I can develop from this is depression. In medicine, there are generally two extremes when it comes to thinking about depression. One school feels that depression is simply a weakness of the mind, that ‘strong-minded’ people cannot become depressed. The other school of thought believes that the origins of depression are purely chemical. They feel depression is simply a derangement of the chemicals in our brain. To them, someone with depression would be analogous to someone with schizophrenia: the problem, while in the mind, is purely a chemical one. I find myself more in the middle when it comes to this debate. I feel that depression is a chemical imbalance that everyone is capable of having. However, I do feel that there are certain situations that can push us to have this imbalance. For example, let’s say someone has to go through the unfortunate experience of losing a loved one. Even if this person has no previous psychiatric history I feel that they are now predisposed to falling into depression. The stress of the loss results in the release of a hormone called cortisol, and throws off the balance of that person’s brain chemistry, therefore leading them to depression. How does this relate to me? I have no history of depression myself, but I do have a strong family history of it. Furthermore, if I were predisposed to having the condition, I had just received a pretty strong push in that direction. My mom went as far as constantly trying to make me laugh, bringing in friends of mine in an attempt to ‘keep my spirits up’ (as she puts it). But throughout this whole ordeal my spirits have been high, and while the laughing and visitors have helped, initially I did not think they were necessary to prevent my slipping into depression. Now that I find my days filled with solitude I am not so sure. I have developed a tremor of my neck muscles that has seemed to worsen over the past several weeks.[2] It seems to get worse when 1. I am tired, 2. When I eat, and 3. When I am in any social interaction. It got to the point that during one of my appointments the clinician stopped mid-sentence and asked me, “Are you okay?” “Yeah, sorry about that. It’s an ataxia of my neck.” I explained. “Well did you tell your doctor about it? What’d he say?” “He told me that it was part of the recovery process and that it should get better.” The tremor has gotten bad enough that I avoid any social interaction, even trying to anticipate any events where I might see someone I know. Throughout this whole ordeal, the only question my son has asked me about my condition is, “Dad, why’s your head shaking?” I realize that there must be an anxiety component to this, but meeting or conversing with people never made me anxious before. I didn’t realize that seeing others and socializing did work in ‘keeping my spirits high’. Being patient and accepting the slow pace of improvement have emotionally been the toughest part of the recovery. While this neck tremor has decreased my desire to see others, it is this very socializing that seems to improve my mood creating quite a catch-22. My hope is that the ataxia will improve in time, and that I will resume my regular socializing activities. I have been asked what my mood is now. I feel hope. Hope that my condition changes, hope with every day of improvement. Being able to write this blog has given me hope, hope that my story is heard. When I initially began to write it was for therapeutic purposes, but now as I write I constantly keep the reader in.

http://www.ifred.com

A great website for depression

—————- Religion —————-

Another question that I am often now asked is whether I have found God through this. If someone were to ask me today what religion I practice my response would be that I do not practice a religion. Does this mean I’m an atheist? No, like over 1 billion other people in the world I consider myself an agnostic. What is an agnostic and what do they believe? According to Webster’s Dictionary, the definition of an agnostic is: a person who holds the view that any ultimate reality (as God) is unknown and probably unknowable[3] Basically, it’s someone who doesn’t really know if they believe in God or not. According to the Pew Research Center 16% of the world’s population is agnostic, which ranks it the third most popular belief (behind Christianity and Islam). You would have thought that going through an experience like this would have at least nudged me in the direction of another religion, as you often hear of people who go through intensely traumatic experiences and come out with strong religious beliefs. This did/has not happened with me. My beliefs in a greater being have remained the same. Throughout this I have come across many religions. From someone saying something as nice as “You’re in our prayers” to being offered to take part in a prayer session, I have experienced the gamut of religious immersion. My father, a Buddhist, spoke to me of the teachings of Buddha and even gave me a statuette of Buddha to keep by my bed. I have two friends (one in the Emergency Medicine program, and one in my Family Medicine program) who go to the Church of the Latter Day Saints and offered to come to my hospital room to conduct a prayer session. My in-laws (Amy’s husband’s family) who practice Islam often keep me in their prayers and even gave me a necklace with a pendant that contains writing in Farsi. I’m often asked what it means. I respond by saying, “I have no clue, it’s written in Farsi and I can’t read it.” “Then why are you wearing it?” is the natural response. “I’m not sure. I guess I wear it because my in-laws were kind enough to give it to me to let me know I am in their thoughts.”

The necklace I mentioned- you can't see it in the picture but there's Arabic writing on it. If you look closely you'll notice the end of the chain is broken, my son pulled at it while I was changing him, it is for that reason that I no longer wear it.
The necklace I mentioned- you can’t see it in the picture but there’s Farsi writing on it. If you look closely you’ll notice the end of the chain is broken, my son pulled at it while I was changing him, it is for that reason that I no longer wear it.

Continue reading Recovery part 2…

Recovery part 1…

———— Discharge —————–

Unfortunately my discharge from Sparrow on May 3rd did not mean I had recovered. The idea behind all discharges from the hospital is that the patient can complete their recovery at home; the hospital is no longer providing services necessary, or warranting a hospital stay. These ‘services’ can be as straight forward as intermittent neurology checks[1](we call them “neuro checks”), intravenous antibiotics, or even something as extreme as a breathing machine. For me, the risk was a fall with a subsequent bleed or possible infection. Before discharge from a Rehabilitation Floor, these risks needed to be evaluated, but the basic tenet is the same: if the hospital can no longer render services that could otherwise be provided at home, then the patient should be discharged. In my case, the discharging physician felt that without the assistance of my mother I was at a significant risk for falls. It is for that reason he refused to discharge me unless I was under the care of my mother.

———— What it Feels Like ————-

Since being discharged from the hospital in May of 2013, my days have been filled with reading, spending time with with my family, and physical therapy (for me this includes sessions with therapists as well as workouts at the YMCA). People often ask me what my debilities feel like. This is something to which I have given much thought, but have not found an analogy that does it justice. I equate the balance issues to constantly walking on a balance board: the ground feels as if it’s constantly moving underneath me. My vision is still double when tracking a moving object, but improving- the images are side by side and made worse with head or eye movement. Tracking a tennis ball, for instance, is impossible without double vision. If I stay focused on an object for long enough, the double images will converge and become one image. This is why I have been able to read. My speech is impaired. There are two ways to mimic my speech: 1. Drink 7-10 beers then try to say “Peter Piper picked a peck of pickled peppers” ten times. Or 2. Take a handful of marbles and stuff them into your mouth. Now take a deep breath in, and breathe every ounce of air out of your lungs. Then try to speak.[2] Unfortunately, this is how I feel when I try to speak.

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These impairments can and have all been explained medically: the mass in my brain and it’s removal pushed on some key areas that normally regulate these functions- for my balance, the mass pushed on a part of my brain called the cerebellum. Damage to the cerebellum can cause a wobbly gait. Speaking is a very complex process that involves very fine motor skills. Damage to the cerebellum can impair this system and one’s ability to speak. There are also a group of nerves that help us in controlling our eyes. In my case, damage to the nerves that help my eyes remain aligned is the culprit of my double vision.

A balance board- ignore the purple socks
A balance board- ignore the purple socks

——- Normalcy ————

Every day I make small gains, whether it’s being able to walk quicker than I could the previous day or being able to type, there is at least a small gain. In the beginning, the gains were more noticeable, making it easier to stay positive.[3] Anything is a gain compared to being confined to the bed in the ICU. Today I just returned from a therapy session where I was able to jog intermittently on a treadmill for 20 minutes (using the handle-bar) followed by a record of 8 jumps with a jump rope. Before this, I changed Cormac’s diaper and put him in an outfit to prepare him for the day. When one looks at what I did today versus the way I looked immediately after the surgery it would be easy to say that I’ve made large gains. On the drive home from LBI my stepfather said, “Chris, when I saw you after the surgery in the ICU, I thought that was it. It was the end of Chris as we know it.” It was unclear what he meant by this. Did he think I was going to die? But according to him death, especially after the surgery was completed, was not what he was referring to. He feared that recovery was doomed, and that any return to normalcy was completely out of the question. To him, even progress to my current state is nothing short of miraculous. I have mixed feelings in response to this. On the one hand, yes I am grateful to be alive and to have thus far recovered like I have, but on the other hand, I want this to end like a movie, where the story ends with the main character being stronger and ‘better’ than before.

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—— Advice on Getting Better ———–

Interestingly, my step father, an avid dance fan, has been deeply involved in my physical therapy, and is always constantly telling me to dance for my therapy and recovery (he has taught me the Three step and the Cha-Cha during our sessions). I have memories of dancing with him in the hospital room in Sparrow. Also every day during our east coast LBI trip he would have me dance with him. My mother’s focus has been more on having a healthy diet and a positive attitude (She constantly comments on my weight whenever she sees me now). She always asks what I have been eating and how I am feeling. When I talk to Alice, whom I mentioned works in the financial district in Boston and is also a certified fitness instructor, she constantly harps on the importance of workout for my ‘core’ and ‘activating my core.’ From my understanding of fitness trainers, this is a universal mantra. My father-in law, who does Sudoku every morning, as well as various Word Games when he gets up in the morning has gone as far as giving me daily Sudoku’s and Word Games to complete. My father who strongly believes in the power of the mind has suggested that I start meditation. The underlying theme in this is obvious: when it comes to my recovery people have tried to enforce their beliefs on to me. This does not mean that any of them are wrong. On the contrary they may all be correct. But I have realized that I have to take every piece of advice with a grain of salt. In fact, I know I will also give advice to others based on my own experience: during my recovery I have taken up reading and working out, two activities I am already looking forward to suggesting to my patients. I think that we are all biased when giving advice; if it worked for me, why not suggest it to someone else? Under the assumption that this is inevitable, the onus then falls on the person receiving the advice. It is up to them to sift through the advice and determine if it is in their best interest or not to follow it. Too many times I feel, especially in the doctor-patient relationship, advice is taken without question. Patients often see physicians as infallible, but we are humans that make human errors. Even though there may be a degree on our wall that says M.D., this does not mean that we do not and cannot make mistakes. Next time your physician says something like, “Your cholesterol was a little high. Let’s start a medication.” Instead of simply nodding and saying, “yes doctor” throw in a “Why? What does that mean?”

——- Scar ——–

My battle wound
My battle wound

As I stated earlier my ultimate hope is for a 100% recovery with no residual signs that I ever went through this. In fact, I changed my gym membership in hopes that I could return to my original gym once I have recovered with absolutely no sequelae. This all changed when I finally had a look at the scar left on the back of my head from the surgery. I had been told during my hospitalization that the scar looked ‘good’ and was ‘hardly noticeable.’ Up until a month after my discharge I took everyone’s word for it and didn’t make any attempt to visualize the scar. However I was in Chicago over the 4th of July in 2013 and decided to take a picture of it. I did not expect to see what I did: on the center of the back of my head, starting at about my ear line, there is a 13 centimeter scar that runs to the base of my upper neck. On both sides of my head above my ears are areas where no hair is growing. According to my wife, who researched the details of the surgery, these scars are where the surgeon placed a clamp on my head to keep my head still during the delicate procedure; she told me that they often use 60 lbs of force on my head with these clamps. Right now, I’m a little over a year removed from my surgery and these marks, reminders of the surgery and my ordeal remain. These scars do not represent my lack of hope for a full recovery but will simply serve as reminders of this ordeal years from now. Before seeing these scars, the permanence and the extent to which this has permeated my life to me were unclear. Seeing the scar on the back of my head reminded me that this was in fact a marathon and not a sprint to recovery.

Twelve years from now, when my eldest son is preparing to leave for college, one of his friends will inevitably ask him, “Christian, why does your dad have those scars on his head?” My hope is that he’ll respond with pride, “He had a brain tumor a while ago and they had to take it out.” (I hope he knows by then that potato chips did not lead to my tumor).

——- Kindness ———

In fact, I am surprised he has not been asked that yet, as seven year olds typically say what’s on their mind no matter what it is, with no inhibitions. Thus far the only comment I have ever overheard was from a little child. I was in LEGOLAND with my son, wife, and father in-law leaving an exhibit when one of the children turned to his mother and asked, “Mommy, why is that man walking so funny?” I smiled as I walked away. That was the first and only comment I’ve ever received about my condition from someone in public and I am by no means inconspicuous when I go somewhere. However, as I mentioned earlier I hate attention, so I do wish no one would notice me walking in. It’s probably my hatred of attention that makes me paranoid about being looked at, but I do feel now that even though no one has said anything, I can almost read the thoughts in their mind, Look at this poor guy, he can barely even walk. What happened to him? He’s too young to have had a stroke. Oh wait, there is a big scar on the back of his head, that explains it. But this is pure speculation, maybe I’m over-thinking their thoughts; maybe they don’t even notice me at all. But I do have to say how much faith this has made me bestow on society as a whole. Everyone that I have come in contact with has been extremely kind. Their kindness can come in the form of opening a door for me to telling me how much progress they believe I have made. As much as I think I can read random people’s thoughts, their kindness towards me makes me less self-conscious.

My father- in law, Christian, and me at Legoland
My father- in law, Christian, and me at Legoland
A graph the University of Michigan therapist drew for me, emphasizing that my gains would be more visible in the short term.  The spikes represent the up and down days I should anticipate.
A graph the University of Michigan therapist drew for me, emphasizing that my gains would be more visible in the short term. The spikes represent the up and down days I should anticipate.

[1] This is commonly done for patients whom you suspect a stroke in, but cannot confirm with imaging. My father, for instance, would have had this done.
[2] I don’t recommend trying either of these. You can take my word for it.
[3] The therapist who saw me initially at the University of Michigan warned me that gains would be greater in the beginning, slower and harder to notice as time went on. In fact he drew me a graph that depicted my recovery (See the attached image). One of my physicians at Sparrow made the comment that, “Recovery will be a marathon, not a sprint.”

Family part 2

————– Christian ——————-

If there is one person that I’ll remember after this is through it is my eldest son, Christian. He has been incredible.  Christian was born on the night of Christmas, December 25th in 2006. We were prepared for a girl and even had a girl’s name picked out (we decided not to find out the sex beforehand but for some reason assumed it was a girl). When he was born on Christmas night, my wife came up with the name Christian. It’s funny for two reasons–1. we have no religious preference, and 2. my first name is Chris, short for Christopher. For many people, Christian is too close to Christopher phonetically. We did consider these issues but still liked the sound of the name Christian. As an added bonus, one of our favorite television shows at the time was a show called Nip/Tuck, a show about two plastic surgeons, one of whom is named Christian.

Christian with our dog
Christian with our dog

Having six years under your belt is an interesting time. You are just learning to read and can do simple arithmetic, but you also know much more than people give you credit for. You have absolutely no qualms about saying what’s on your mind, and you don’t fear consequences or repercussions. I like to think that my son is of above average intelligence (I think all parents say this, as I’ve yet to meet a parent who says, “This is Timmy, he’s only of average intelligence.”) But one of my worries after the surgery was his reaction to my condition, particularly when I came home. My wife was kind enough to bring him to the hospital during my stay, but seeing him in the home setting would be different. It doesn’t matter if you’re six or sixty years old, when you walk into the hospital, you expect to see sick people. You might walk by a room where there is a woman hooked up to a breathing machine, but this does not surprise you because it’s a hospital. This was no different for my son; to him his dad was sick so naturally he went to the hospital. On one of his visits he brought me a picture he had drawn titled ‘Dada in the Hospital’. It was a stick figure lying in a stick bed (I said he’s smart, I didn’t say he was a little Picasso).

My wife and I have tried to give Christian as few details as possible about my condition, but it’s funny what he picks up without us knowing. Somewhere along the way he overheard someone saying that it was a cyst in my brain that was taken out. My parents have always harped on proper nutrition. Their idea of a healthy day’s eating is a banana for breakfast, another piece of fruit for lunch, and a salad for dinner. Needless to say, they constantly put down my diet decrying it as unhealthy. Somehow with this information, when anyone asks Christian why his dad is in the hospital, his response is, “Dada had a cyst in his brain from eating too many potato chips and they had to take it out.” This makes us laugh so hard that we always forget to correct him. He still thinks that potato chips are the culprit of my mass.

Christian
Christian

Christian just entered Kindergarten last year, and has told me that the other children and his teachers have asked him about my health. It hurts me to think how this has affected his life. Yet on my return home from the hospital, he made a sign that read, “Welcome home Dad!” Besides that and the occasional comment to “Park there! Remember? We have the handicapped sticker now” it was almost as if I had never left. He has not once mentioned my disability. My fear was that I’d return home and he’d act differently. I was afraid he’d lose respect for me and stop listening to me. He is by no means a perfect child: he still whines a little too much, and he still throws the occasional tantrum, but he listens to us when either my wife or I have to discipline him. Today there are only a few parts of my day that I look forward to: 1. Seeing Christian return from school (camp during the summer), 2. Tucking him in at night, telling him that “dada loves him,” and giving him a kiss and 3. Picking up Cormac from daycare.

————- My Dad —————

My dad, Rei-Kwen Chiou
My dad, Rei-Kwen Chiou

If I had to use one word to describe my father, it would be stoic. As a teenager when I had won the State Tennis title, I remember the reaction on his face: nothing, not even a smile. “Good job” he told me. When I told him that Fleur and I were expecting our first child–his first grand-child–he forced a smile and said, “Congratulations.” It was obvious to me that his natural reaction would have again been nothing. He focused on the mental aspects of my tennis training, always preaching for me not to wear my emotions on my sleeve. He would tell me things like, “The best reaction to a missed shot is no reaction at all. Showing your opponent any reaction would give him an edge.” His initial reaction to seeing me in the hospital bed was no different. I would imagine seeing his only son confined to a hospital bed would be, at the very least, disconcerting. He did not show any emotion when he saw me. He was stone-faced.

I had taken in his lessons on his stoicism especially on the tennis court. I can’t say I was perfect at it–it was difficult to suppress all my outbursts of frustration. I didn’t realize it at the time but he wanted me to translate this from the tennis court to my everyday life. Tennis was such a big part of my life that I believe it did inadvertently cross over. In fact, even those closest to me still tell me that I am hard to read, and have a great “poker face.” Seeing him by my hospital bed brought back these lessons that he taught me. It was also the first time I could see his age. Even though there was much wisdom in his eyes, I could tell that the years of taking urologic emergency calls in the middle of the night had taken its toll. Many times during his stay he would take naps in between my therapy sessions. He would make sure to leave by 5:30 every evening and wouldn’t arrive until 10:00 in the morning in order to get the sleep he needed.

I’m not sure why it didn’t hit me before, but during this visit, I found myself in awe of the wisdom he had accrued during his lifetime. I unfortunately did not often get the chance to visit with him during the past few years, and in the hospital I felt that I should take advantage of the opportunity to pick his brain about anything and everything. My questions for him ranged from medical ones, “Dad, what is the normal urine output of a person per day?” to non-medical ones, “How do you clear your mind during meditation?” He told me of his readings of the Dali Lama and various other philosophers, and shared with me his views and opinions on their beliefs. I was fascinated, not only by his knowledge, but also by the fact that it had taken us over 30 years to sit down and actually talk. My thought was, why did it take a brain tumor for this to happen? Many things have happened that normally wouldn’t have if it were not for the tumor: my sisters both visited at the same time, my father and I actually talked, my father and mother coexisted, and I got to hear from people that I haven’t heard from in years.

My dad in the Operating room
My dad in the Operating room

When it was time for my dad to go I could not hold back my emotion as he had taught me. I don’t know what made me cry, but I think it was the realization that I had wasted so much time with him and had not connected with my own father. I think part of me could also sense the emotion in him, something I have never sensed before. He gave me a hug and told me that I will recover. Then I saw something that I had never seen before in my life: he too was crying. I’m not sure if it was because he was seeing his only son debilitated in a hospital bed, or because he too felt sad about the lack of connection we had had over the years. I have stayed in touch with him on a regular basis since seeing him. In fact this past August I received a kind letter from him:

Chris:

In every stage of life, in every situation, we must bring out the best from ourselves and our family. We must recognize and acknowledge difficulties and obstacles but get ourselves together. We must muster our physical and mental strength in order to fight to achieve our goals. So work your hardest every single day. Train and condition yourself physically and mentally.

It will take time, but time alone may not be enough. It will take strength and the mental art that you have within yourself.

Never give up.

Love,

Dad

I do not often keep letters or cards, but I will keep this letter forever.

There is no golden lesson for me here. I simply know that without my family my outcome would have been different. Whether it was the laughter I shared with my mother, the compassion from Amy, the physical strength from Alice, the constant encouragement from my wife, the respect from my eldest son, or the wisdom from my father, they all shared a common denominator: love. And I was the lucky one to receive it from these people.

 

 

Family part 1…

I know that I would not have made it through this ordeal without my family. As I mentioned earlier, from my surgery on 3/28/2013 to after my discharge from the hospital on 4/3/2013, my mom stayed in the hospital with me every day and night.

———– My Mom —————-

My mom- Ching Chu Chen
My mom- Ching Chu Chen

By her appearance, my mom does not seem imposing. Her thin frame along with her 5’1 inch height (on her tip-toes) does not lend for much intimidation. However, once she has decided that she wants something done, watch out. It will be done, done well, and the way she wants it done. Growing up as a junior tennis player in a small town with a shortage of top-level tennis players, my mom always somehow managed to find me a top-notch practice partner. She hired the best tennis coach the city had to offer, and would often come to the lessons to help pick up balls, in hopes of reducing any wasted time during the lesson. She was known around the tennis community as ‘the mom of that Chiou-kid’. One time in a meeting for the local tennis association-a meeting that involved me, and three other tennis players in our town-the subject of my mom came up. One of the other parents said, “listen, we all know that she is… well, pushy, but I think we all know Chris wouldn’t be the tennis player he is without her.” I didn’t think much of the comment at the time, although it stuck enough for me to remember it later that day.

“How’d the meeting go?” My mom asked.

“It was fine,” a typical non-descript answer from me, and then I remembered the comment, “actually someone mentioned how they thought you were pushy.”

“Really?!? Why did they mention that?”

“I’m not sure, they did say that it has helped my tennis though.”

The most common reaction to being called pushy is one of anger. With her, I could see the corner of her mouth start to rise, almost revealing a smirk. She was proud, not because she was known as a pushy mom, but because her pushiness had resulted in making me a better tennis player. This is my mom, when she wanted something, especially for her kids, nothing could stop her. During this ordeal I cannot imagine how hard it must have been for her to see me in the state I was in. Yet, my first memories of her after waking up following the surgery was her asking for more medication to make me comfortable. She would do everything for me. In fact, nurses who were assigned to me would often make the comment, “Let me know if you need anything, even though I know your mom will do it first.” I have always been close to her. I’ve often been called a ‘mama’s boy’. Medical school brought me away from home, and I was also far from her during residency. So for these years, we were not able to be as  close. Sure I’d make sure my daily drives home from the hospital after work included a telephone call to her, but something had changed. I can’t put my finger on the change; maybe because I had started my own family, my time for her had diminished. But looking back at this ordeal, my bond with my mom has grown stronger than ever. I remember about three weeks in to my hospitalization, the physical therapist I was working with allowed me to walk without assistance. I don’t recall much about the actual experience except seeing my mom pumping her fist into the air with tears in her eyes, yelling words of encouragement to me. My mom was glowing for the rest of the day, telling everyone that would listen of my feat. The responses were usually of feigned interest, but I do remember a nurse saying to my mother, “Wow Pearl, that’s great! Just think, you got to see your son take his first steps twice.”

———– The Chiou Women ———-

Me and my sisters- (from left)- me, Amy, Alice
Me and my sisters- (from left)- me, Amy, Alice

I described both of my sisters earlier. As I mentioned, they are as different as can be. However, the bond we share is the same. Amy, my older sister, with a heart the size of Texas, has been in contact with me every day since the surgery. She was there during the surgery and always stands as a voice of reason. My younger sister, Alice, was also there before, during, and after the surgery, never hesitates to tell you what’s on her mind. The thoughts when I could first see and hear were, “I want to see (or hear) my family.” The dynamic is always different between mother-offspring and sibling-sibling; there are topics that can be discussed with a sibling that cannot be discussed with a parent. For example, I would often talk to Amy and Alice about my girlfriend issues, a topic I would never even think about breaching with my mom. Even though this difference was slightly blurred during my hospitalization, the basic tenets of the difference still persisted. There were still topics I would have absolutely no problem revealing to either Amy or Alice that I would not reveal to my mom. One example that sticks out in my mind had to do with the frequency of my therapy sessions. My sense was that I was having them too frequently especially with the added sessions with my mom, I felt that I did not have enough time to rest. I made this clear to my sisters but did not want to reveal this to my mom. I’m not sure why I felt this way, but my thoughts are that the different bond that exists has something to do with it. In a previous section I mentioned the birth of our second son. My wife becoming pregnant was no accident; it was a decision that was made between us with much scrutiny. In the end, however, one of the reasons I wanted another child was that I did not want to deprive my son, Christian, of the similar strong bond that I had with my sisters.

————— Fleur ————-

Me and my wife taking a selfie
Me and my wife taking a selfie

When the topic of the ‘stronger’ sex is brought up I immediately think of my wife. My part in this was easy, the only hard part for me was undergoing surgery, for which I was unconscious. She is the one who had to see me after the surgery writhing in pain; she is the one who had to schedule all of my appointments; she is the one who was watching and caring for our(then) six year-old son during my month in the hospital. And the kicker: she did all this while carrying our second child close to term. Sure, maybe I can lift a heavier dumbbell than her, but there is no way I could do everything that she has done. I often think that she deserves better than me, someone without a brain tumor that can walk, talk, and see properly; then my selfish side kicks in and I realize that I need her with me. She has not once made a single complaint about our situation. In fact, she often tells me how kind everyone has been to her and how lucky we are to have the friends we do. I know that her interactions with my mom have been tough. I know that she wants to be by my side at all times, but with my mother, she is constantly trying to balance my older son’s care, with my mom’s desire to help me. This was paired with the logistical aspect of the hospital room itself (the room only allowed for 1 bed besides mine). Her relationship with my mom is a strong one, but the relationship with the parent in-laws always has an underlying tension. If you think about the relationship: a significant other is going to now live and love your offspring; someone you have raised for 18 years. That is behind all relationships with parent in-laws. Ever since my return from LBI, my wife has continued to schedule all of my appointments and help me with any activities of daily living that I needed. Her attitude somehow continued to be positive, often telling me of the progress that she sees in me, and even making plans for after my ‘full recovery.’ I once mentioned to her “if I ever recover from this then we’ll…” (it was subtle but she picked up on it). She immediately stopped me mid-sentence and said, “if?!? Not if, when you recover!” I know that her frustration with me has been growing as of late with my lack of desire to want to socialize, but I only know this because I have been with her for over ten years(we met in college), not because of any outward manifestations. Even when I vent at her, whether it was a physician or care-giver that I didn’t agree with, or with a quip about a family member, she has been the one listening to me, somehow managing to agree with me while not also trouncing on the person we’re talking about. I know I’ve said this now a few times, but I could not have gotten through this without her. She has provided me with not only encouragement from a physical and emotional point of view, but she has also given me the strength I needed to endure this.

 

Lucky

About two weeks after my discharge there was a get-together of the second year Family Residents.  We try to have an official meeting at least once during the year so we can all catch up and try to stay somewhat sane amidst all the madness that is known as residency.  Besides socializing, we also complete team-building exercises and air any grievances we may have.  We call it ‘Wellness’.  An attending physician and Amy R. usually oversee these meetings.

——– Amy R. ——–

Amy R. is our office social worker.  Officially she is there to help with certain aspects of patient care[1], but because of her high quality of work, we take advantage of her and go to her for help with even the tiniest of minutia that even tenuously relates to patient care.  My older sister, Amy, has the biggest heart of anyone I know.  Amy R. is nipping at her heels in that category.  Following my surgery, Amy has visited me in the hospital and prepared a meal for Fleur and Christian.  It was during her meal drop off that she revealed to Fleur she had often thought of our situation and it brought her to tears.  I have been in frequent contact with her to help me with any (there have been several) insurance issue I have had.

Amy R. -in her office
Amy R. -in her office

Amy has spearheaded this annual meeting but gets pushback when she tries to arrange for more than 1 day per year for ‘wellness’.  Personally, I like it and feel that it is a refreshing change of pace.  To my knowledge, this is unique to our program, and none of the other residencies at Sparrow have this.  Recently one of the residents from another program tragically took his life, allegedly because of marital troubles. I’m sure working over 80 hours per week in a grueling residency did not help matters.  Would an annual Wellness day have saved his life?  Probably not.  Although bless Amy’s heart, I’m sure if it were up to her we would have daily Wellness meetings.  Would a daily Wellness meeting have saved this man’s life?  The answer becomes less clear.  I realize that, as with everything else, balance is important; and in residency a balance needs to be found between learning, work, and mental well-being.  My thought is that recently the balance has been tipped toward working and away from learning and mental and emotional health.

———- Wellness ———-

Anyhow, after the surgery, Amy asked Fleur and I if we would like to join the meeting, as all of the other second year residents would be there.  Fleur, knowing me, understood that I did not want to go, but thought that I should go.  In fact my mother, who caught wind of this get together, suggested I give a “Thank You” speech during the gathering. I respectfully declined.

well·ness

noun    (Medical Dictionary)

Medical Definition of WELLNESS

: the quality or state of being in good health especially as an actively sought goal <lifestyles that promote wellness>
The Merriam-Webster definition of Wellness

The session always opens with pleasantries and socializing between the residents.  It’s funny, even though we are all in the same year of the same program, we rarely run into each other.  Seeing each other is akin to meeting an old friend that you haven’t talked to in years.  So greetings like, “Hey! How are you? How are your kids?” are not rare.  After catching up with each other, we then get together as a group to answer several of Amy’s questions:  “If you could give the incoming interns one piece of advice, what would it be?”.[2]  Fleur and I were late as usual, missed the beginning of the get-together and came in in the middle of the question-answer session.  “Name something that you are grateful for and something that bothers you.”  There were about ten of us sitting at a round table, and we were situated in such a way that Fleur and I were one of the last to answer.

My fellow residents
My fellow residents

One of the residents answered that she was grateful for her family and that bullies bothered her.  She went on to elaborate that her definition of a bully is someone who tries to enforce their way of doing something or their beliefs onto you.  When one thinks of bullies, one envisions an adolescent demanding lunch money.  But she had a point. The idea of a bully changes in adulthood and is even different in the field of medicine.  Of course, there are still adults who intimidate with the threat of physical force, but more often now the intimidation comes in a different form, an emotional bullying.  However, the line between someone who simply has a strong personality and a bully is thin. Just because someone is opinionated doesn’t make him a bully.  In medicine, you are forced to interact with all sorts of personalities and at 4am, the people you call aren’t always the most chipper.  In fact, I attended a lecture that focused solely on how to optimize interactions with other providers. This lecture zeroed in on introspection and used your personality to help you interact with other providers.  I believe that tools given to me during the lecture could be translated to everyday life.  We were warned, one of the people you will have to talk to will have the mix (perfect storm) of: 1. Someone who doesn’t want to talk to you[3] , 2. They have a personality that doesn’t gel with yours and 3. The person does not agree with your assessment of the situation/patient.[4]  We are taught that in this situation we have to remember we are now the patient’s health advocate, and that different approaches might work for different providers.  How does this relate to bullies and more importantly how does it relate to my situation? I have come across ‘bullies’ in my recover–people who demand that I recover in their way.  They are hard to spot and their methods are often subtle, unlike the obvious playground bullies. I often have to employ the same techniques I do in dealing with these ‘bullies’ as I did in medicine.

When it came time for a response from my wife and me, her response was, “I’m grateful that everyone has been so kind during this whole ordeal…” She couldn’t continue, as the tears choked off the rest of her response. It was my turn to respond–even though I was going last I had not used the time to think of a response. This was probably good, as providing a rehearsed response would detract from its sincerity.   “I feel grateful for my health,” I could see the bewilderment in everyone’s eyes. I was just diagnosed with a brain tumor. Although good health is a typical response, in my case it seemed to make no sense.  To them, out of all aspects of my life, my health was the one that was failing.  I thought of this as I elaborated, “Throughout this ordeal, I have been told how unlucky and unfortunate I am,” I went on, “but I feel incredibly lucky, lucky to be alive, lucky that the tumor was benign, lucky to have the family I do, and lucky to have friends like you.  Now when anyone tells me how unfortunate I am, I tell them how lucky I feel.”  I also wanted to tell them how this had allowed me to spend time with my wife, newborn son, and eldest child, but I could not go on as the tears prevented me from talking any more.

 

[1] For example, there seems to be a shortage of child mental health professionals in Lansing.  Thus Amy hears about all patients under the age of 18 who needs to be seen for psychiatric issues.

[2] I think my response to this was that I’d reiterate the importance of sleep.  Even to this day I try and make sure that I get eight hours of sleep every night.

[3] For various reasons: maybe they don’t like you, maybe it’s at an odd hour, or maybe they’re mad their sports team just lost.

[4] I’ve unfortunately had many of these encounters, most of which originate in the Emergency Department (ED).  The ED is an interesting place because it is essentially the gateway (in the majority of cases) to the hospital.  Physicians in the ED often have no choice but to ‘admit’ the patient to the hospital per the standard of care.  Let’s say someone was admitted for difficulty in breathing.  There are countless numbers of conditions that can cause difficulty in breathing with a heart attack, clot in the lungs, or infection in the lungs being some of the ‘bad’ possibilities.  I’m not a betting man, but chances are that this person will leave the hospital in good health, without having been diagnosed with any of these conditions.  But in the eye of the ED physician, if 100 patients are admitted to the hospital with difficulty in breathing, and 1 ends up having a heart attack, it’s worth getting berated and yelled at to help the one patient.  Having trained in the ED for a year, and having several family members work as ED physicians I respect this field, and detest it when someone gets a page from the ED and says something sarcastic to the effect of, “It’s them! Great.”