Small Movements

The subway and then the bus took me east to the hospital, through the neighborhoods of Los Angeles, to say what I know we should have said to each other years ago. Decades ago.

BY MARIA HSIN //
ART BY GETTY IMAGES

The subway and then the bus took me east to the hospital, through the neighborhoods of Los Angeles, to say what I know we should have said to each other years ago. Decades ago. He wouldn’t respond—he couldn’t—but at least I would have said it out loud.

“Stay With Me” played on my Pandora station. Fitting. I was headed there to plead that he stay. That he open his eyes and understand me.

My father and I had a long, rocky relationship, and in the past year he had suffered a major stroke. It rendered him speechless and unable to swallow or move the left side of his body. Because of the abnormal way his heart pumps blood—a separate condition—the doctors didn’t think that things were going to get better. The latest complication was pneumonia. If I was going to say anything, now was the time.

He was awake when I entered the room. I hadn’t seen him open his eyes since he was transferred back to the hospital with a fever of 101 a few days ago. Now his gaze was locked on something.

I cautiously stepped closer to him. When I spoke, he looked up at me.

I said hello in Mandarin. I held his hand. I wanted to see if he would squeeze it back when I asked him to. His strength had diminished. We went through our usual routine—I asked him to move his fingers, feet and toes—and the pistons began to fire, as the machine that was his nervous system seemed to warm up.

With puffy eyes and a red nose, I began my speech. I apologized, and said I knew we hadn’t gotten along for many years, and that there was a lot we had not said to each other. I started to cry and his face became red, and he shook. He was crying too. I felt bad, and then realized he had understood me, that he was acknowledging our difficult past. That it had hurt him too. I stopped crying and I told him it was okay. It was time to focus on his hands and his movement right now.

I remember the screaming and the crashing of plates from my childhood, all too many nights. I longed for my mother to leave him. I remember his betrayal and his verbal abuse. After the divorce, we erased all physical traces of him from the house. But his daring, his cooking and what I knew of his culture—they lingered in my psyche and in my heart.

Of course I had regrets about the years that followed. I could have spent more time with him, I could have done a better job documenting his journey from Hong Kong and Shanghai to America. I never learned enough of his native Mandarin to converse with him in his language.

Other attempts to confront the past, and all the hurt, had failed. As we shook, after my speech, I wondered if his tears and mine might be some way forward.

It has been a year since then, a year of watching my once commanding and independent father struggle, helpless, in his body’s rebellion. I have learned to see that he is just a man, flawed and broken, in many more ways than before. I see that I have an opportunity to talk to him, to share my life with him. One day, he may talk back. I now speak for him at his therapy appointments. I celebrate his progress, including the day he was able to say hao, or “good,” in Mandarin.

Some people have asked why I would do this. The answer, I now realize, is simple. Because I see that he has not given up. He is certainly not the man he was before, and he may not be able to do the things he did before—including cook or walk. Perhaps it is this transformation into someone else, someone we both are discovering, that will finally allow us both to be free of the past.

 

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“Small Movements” was published in Proto magazine.

 

When Therapy Runs Out

We have almost exhausted my father’s allotment of therapy for his stroke. Will supplemental insurance make a difference? For now he is seeing an acpuncturist twice a week.

Sometimes it feels like we are going in circles.

In order to get better after his most recent stroke, my father needed therapy. He could only tolerate so much therapy when we started. And then when he could tolerate more, and was starting to make progress, we had to decide how much therapy and which therapy to keep.

As you may have guessed, Medicare will only provide a certain amount of money for therapy. To complicate matters, speech and physical therapy funds come from the same bucket. And speech and physical therapy are what he needed the most.

We have already seen a difference in how easily he is able to sit up once he is moved from a wheelchair to a bed at therapy. When he was attending weekly, not surprisingly, it was easier for him.

If he needs therapy to get better, goes to therapy, then tolerates more therapy and makes progress, but then has to stop, how will he get better?

If he needs therapy to get better, goes to therapy, then tolerates more therapy and makes progress, but then has to stop, how will he get better?

I have looked into supplemental Medicare plans, but that will not help his current situation and get him addditional therapy.

A family member might be able to add him to his insurance, but that might not happen until next year. Which means my father, who is still making an effort to get better, will go half a year without therapy.

I asked what it costs to pay out of pocket for therapy, and it is not cheap.

The good news is he makes progress with mental stimulation exercises, particularly math and multiplication tables. He is now up to the “6” times tables and one of the activities persons at the skilled nursing facilty is supposed to review them with him (in addition to being mentally sitmulating, it is something he enjoys). For some reason his mind remembers addition and subtraction easily, but multiplication has become a challenge.

He continues to move his left arm slightly during occupational therapy exercises. The left side of his body was paralyzed whe he had his stroke last March.

And he recenlty moved his left thumb.

While these are all minor improvements, they are still cause for celebrating. I remind him that each small improvement will lead to more, and the more he is able to move, the easier it will become.

Acupuncture is going well, and his traditional Chinese acpuncturist immediately recommended herbs that have helped with his circulation. His skin color looks healthier, he is more alert and he is holding his head up better.

He is now tolerating twice-a-week appointments.

It is slightly easier for him to close his mouth, which is important for swallowing. Swallowing is still difficult, but when he closes his mouth and then “chews”, it is a little easier for him to swallow. But oftentimes he must be prompted verbally to do so, and sometimes verbally as well as physically (tactile sensation on his chin and tongue are usually the triggers to get him to swallow).

It is slightly easier for him to close his mouth, which is important for swallowing. Swallowing is still difficult, but when he closes his mouth and then “chews”, it is a little easier for him to swallow. But he must be prompted verbally to do so, and sometimes physically and verbally (tactile sensation on his chin and tongue are usually the triggers to get him to swallow).

We have our light moments.

My significant other, who is fluent in Mandarin, taught me to say, “I speak a little Chinese.”

Like an eager tourist, I tried out my Mandarin on a native speaker. My father listened, and then he started to laugh. I asked if my Chinese was OK — I wasn’t sure if he knew it was Chinese — and he nodded. Then I asked him to tell me if it was good (thumbs up), so-so (rotating hand side to side), or bad (thumbs down).

He graciously said it was so-so.

It reminded me of the time I called him several years ago to tell him I was taking a Mandarin class. He said to tell him something in Mandarin. I did. But he had trouble understanding me, so I repeated it a few times.  Then he said to just tell him in English.

His acupuncturist helps me translate and speaks a few words of Spanish to me sometimes because she knows I am part Mexican. A few times she has teased him, in Mandarin, for not teaching me to speak his language.

 

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My father, at acupuncture last week. Electric pulses course through some of his nerves when small clips at the end of the different colored cables attach to some of the needles in his face and body. Acupuncture has helped his paralyzed side move a little, improved his flexibility, and given him more energy and strength to participate in physical and occupational therapy. By being better able to participate in therapy, he has gotten stronger, and able to sit with little or no assistance at times.

 

And at a recent acupuncture visit he moved his left arm. He lifted it when I asked. It was a very natural movement, immediate and deliberate. For a second or two I forgot the left arm has not moved since the stroke last year. Then the realization hit me.

“Hun hao (very good),” I exclaimed. “You raised your arm, that’s great!”

And at a recent acupuncture visit he moved his left arm. He lifted it when I asked. It was a very natural movement, immediate and deliberate. For a second or two I forgot the left arm has not moved since the stroke last year. Then the realization hit me.

He could only do it once, and knows whether he can or cannot move it. It fascinates me to hear his occupational therapist ask him in Mandarin if he can move his arm or if he can move it again after an exercise. He answers honestly, and immediately.

Our trips to USC Keck Medical Center for outpatient rehab have become less frequent for the moment, which is why I increased his acupuncture treatments. It seems to me it is a little easier for him to close his mouth, and I wanted to get his feedback. So I asked.

Google translated for me and when I played the question for him in Mandarin, he listened. Then he nodded.

 

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Google translated my question to my father into Mandarin, and then I played the translation for him to hear. My father has shared with me that my Mandarin is so-so (which is generous of him) and I translate and play back questions or phrases whenever possible.

 

This might sound like a simple question. Or an odd question. But for a person recovering from a massive stroke — who cannot eat and has difficulty swallowing, closing his mouth and being able to keep it closed, and command the muscles to obey and move and swallow — the ability to answer that question affirmatively is quite a feat.

Practice makes it easier. And having someone help him practice when he is not at USC for therapy, or with his acupuncturist or with me, is a challenge. We will soon see if with some additional training the staff at the skilled nursing facillity will be up to the challenge of helping him perform some basic exercises to trigger a swallow.

 

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I recently provided this list of common words the staff at the skilled nursing facility can use with my dad. At least one nurse expressed interested in learning Mandarin when I mentioned during a training session I translate words to Mandarin to make it easier for him to understand what I am asking. 

 

He is scheduled for a visit with my acupuncturist later in July. Some readers of this blog may recall I had a complicated ankle injury that involved damaged nerves, a sprain and a minor fracture. I had difficulty moving my toes, could not move my foot to the left and was on crutches for half the year.

My official diagnosis was Chronic Regional Pain Syndrome (CRPS) which in severe cases make life extremely painful and dibilitating. Not to say that my time on crutches was a pleasure. I rarely take medication, I prefer the natural route. But the pain was so severe at times I had to take pain meds, and then suffered the side effects.

The CRPS was causing false pain messages to be sent to my brain and with physical therapy and acupuncture, I was eventually able to walk and run again. My acupuncturist essentially “rewired” me so that messages would no longer travel on the paths that were sending the pain message to my brain.

I am curious how this will help my father after a stroke. I know that it will, that has already been made clear. But with her particular bag of tricks, things will get very interesting.

 

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My father, after an acupuncture treatment. 

One Year After a Stroke: What Now?

I don’t remember who was on the other end of the call, but I do remember the words: my father had had another stroke.

My father lay in the emergency room while we waited on the results of an MRI to tell us the extent of the damage and to confirm he did indeed have a stroke. He had already lost control of the left side of his body and could not speak, but the grip in his right hand was strong.

This was a year ago.

A year of riding a rollercoaster that has felt like it was stuttering, coming off the tracks or like it would never stop.

A year of asking what else could be done, what would happen next and why he wasn’t swallowing, talking or moving the left side of his body.

A year of willing the incompetent and careless to give me what I needed to make my father’s life in a skilled nursing facility a little better.

In the process, I have been labeled “the daughter,” code for a word associated with females who are perceived to push too much and demand too much. Silly me for daring to ask that he be clean, groomed and spoken to like a person. That he be encouraged to get better. That he make it to his therapy appointments on time so that he can get better.

A year of willing the incompetent and careless to give me what I needed to make my father’s life in a skilled nursing facility a little better.

In the process, I have been labeled “the daughter,” code for a word associated with females who are perceived to push too much and demand too much.

There have been many conversations with doctors who claimed there was no hope — that he would not make it out of the hospital after such a massive stroke. That he would not wake from a coma after the stroke.

Most emphasized that the one-year point was the standard for recovery. When pressed about whether no one ever recovered after a year or even the possibility of recovery after a year, they would say it was possible to recover after a year, but the odds were not great.

Indeed, last month when my father nodded that yes, he had pain in his left arm and leg, we visited a neurologist in Glendale.

He essentially said, “If it’s been a year, that’s it. There’s not much more that will change.”

I was surprised by his assessment, given that this was the first time he had seen my father, that he knew nothing of the progress, although small, that my father makes each week in therapy, and because our time with him was shorter than the drive to his office. It was a roughly 20-minute drive, in the L.A. rain.

The neurologist noted my father’s inability to move the left side of his body, his inability to speak, and that he was using a wheelchair. I thought to myself, “Well, at least the doctor isn’t blind.”

It was also nearing the end of the work day, and I wondered if the doctor was eager to get us set up with X-rays, and out the door.

In short, the neurologist said, there is no sure way to tell what is causing the pain because my father cannot fully explain what he is experiencing. It is likely the pain he feels is caused by the nerves and muscles that are tightening because they are not moving the way they used to.

To help with the pain, we are going to go the natural route, and stick to acupuncture. It has helped him relax, given hime more energy and made moving and simple tasks like closing his mouth much easier.

So if the neurologist we saw was unable to tell me what else we can look to to help my father become more independent, who can?

And is stroke recovery even possible after six months to a year? The common thinking on this topic is that the most improvement happens during this time. But then what do people affected by a stroke do? What should they expect?

The short answer is recovery is possible. And happens.

A 2008 TED Talk by Jill Taylor, who also wrote “My Stroke of Insight”, revealed that the 37-year-old, Harvard-trained brain scientist was fully aware of how she was losing her ability to complete a simple task because she was having a stroke.

She describes how the process of moving to that thing that allows you to speak with someone else was now a monumental undertaking. Dialing a phone number was accomplished by matching the “symbols” or phone number, on a business card to those on the key pad of the phone.

Her stroke took place on a December morning in 1996.

It took the neuroanatomist eight years to fully recover.

There are clinical trials on stroke recovery using stem cells, and I recently read an article about a program at the University of Cincinnati that focuses on long-term stroke recovery.

The program, called START, seems to be for those who have already received a round of therapy. Indeed, their website states, “candidates for the START program include those who suffered a stroke at least six months ago and are seeking a fuller recovery.”

The article about the program notes that patients often find themselves in a gray area after some therapy, wondering what to do next when they haven’t fully recovered. Sound familiar?

Closer to home, a woman who read my blog post about my father’s stroke contacted me. She is a journalist researching and writing a book about stroke recovery and the insight families have gained in the process. She has interviewed stroke survivors and doctors across the country.

She also happens to have spoken with a neurologist and occupational therapist at USC Keck School of Medicine for her book, including my father’s occupational therapist there.

With her assistance we discovered the stroke clinic at USC. The neurologist there gave an honest assessment of what he thought was still possible for my father after asking about our recovery goals and my father’s medical history.

The biggest relief was that the staff at USC want to help him and will advocate on his behalf. The neurologist recommended my father start physical therapy again. Hearing this was validation of my efforts and acknowledgment that I am not crazy or unrealistically optimistic.

I was nervous about going to the stroke clinic. What if the first neurologist was right? What if there was nothing else we could do? I was worried I had failed, and that we had now reached the end of the line. That the one-year anniversary of his stroke signaled we had the lost the fight.

Two weeks ago, my father’s occupational therapist saw my father’s left hand move. This is his weak side, where there has not been any movement since the stroke. There have been a few times now that we’ve wondered if his movement was intentional but it didn’t seem involuntary. I wondered if something on that side of his body is awakening.

And on Wednesday (April 13), my father was able to move him his left arm. Again, this is the side of his body that was damaged by the stroke. There was no doubt he dictated the movement.

Initially, I didn’t realize he was moving his arm. I thought it was his therapist. But then she asked that he do it again, and he did. I saw his right arm flex and his right leg jut out as he watched his left arm. He was clearly using tremendous effort to will his awakening limb to life.

I congratulated him. This arm has not moved in a year. Since the morning of March 23, 2015. And now, he had managed to send the message to his arm to move and the nerves and muscles responded. I told him that was a great accomplishment and shook his hand. He nodded.

I congratulated him. This arm has not moved in a year. Since the morning of March 23, 2015. And now, he had managed to send the message to his arm to move and the nerves and muscles responded. I told him that was a great accomplishment and shook his hand. He nodded.

His therapists ask him if he is willing to push harder the following week, and he shakes their hand in agreement. He is asked if he understands that there may be some unpleasantness in this process and whether he can push through it. He nods. I see his effort to swallow and talk. He is a willing participant in arm and hand exercises while we wait for a doctor or transportation. He nods when asked if he wants to continue his therapy at USC. And that is all I need to know.

 

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My father, at his weekly occupational therapy appoinment at USC, choosing the “9” card. He was asked to add up the total of the cards on his lap (4+2+3) and choose the correct answer from the cards his therapist was holding. Addition and subtraction were easy, but he is reviewing multiplication.