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.”

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