A Doctor's Visit

Recently I was in my doctor’s office for my annual check up. I sat patiently in the waiting-room looking around at the pictures of his family positioned in large frames across the walls, and noticing how over the years his family of five children has grown to include husbands, wives and grandchildren. I was then called into another smaller room, where I waited for a few moments before the doctor knocked on the door and walked in. He greeted me warmly with a handshake and a smile, and touched my shoulder lightly as he sat down opposite me.

Excitedly, I told the doctor that my first-born was going to be 18 in a few weeks. We reflected on how quickly the time had passed as we proceeded to compress the events of the past years into a matter of minutes.

He was my doctor throughout my three pregnancies. He was a lucky find, a kind and softly spoken man with a calm and peaceful nature. I was just six weeks pregnant when I walked into his office those 18 years ago.

Being pregnant and my journey into motherhood, was one of the most fulfilling and rewarding experiences of my life. I couldn’t wait for the routine doctor visits to hear how much my baby was growing, and as the visits became more frequent, the doctor became more of a mentor to me.

I knew I was in good hands. He was able to ease all of my concerns and worries as the due date drew nearer. I was still completing my master’s degree at the time, and was actually preparing to go to an evening class the day the baby was born. It was 3:00 p.m. when labor began. We got to the hospital at about 5:00 p.m. The doctor showed up, and the team was complete. Just two hours later, at 6:51 p.m., my son was born.

As we continued to talk about my health and life, the doctor asked how my son was doing.  My eyes filled with tears as I spoke about the progression of his Duchenne muscular dystrophy since I last saw him a year ago. In his kind and soft way, he again eased my concerns and worries. He continued being present to what I was saying.

The doctor really has been part of this Duchenne journey. Not only did he bring my son safely into this world, but he has looked after my health throughout all my pregnancies and follow up visits over the last 18 years. In this way he has been more than just my doctor but also a spiritual teacher and friend.

Pregnancies and babies and motherhood are life-changing events, and to come back every year to the same doctor to discuss and ponder these events is rewarding. Life goes fast, and these doctor visits have allowed me to stop and reflect and share with someone who is genuinely interested.  After all, I put all my trust and faith in him during that delivery.

Most of all he understands. He understands the emotional investment we have in our children. As a doctor, he plays a major role in bringing babies into the world, present to the happiness and joy, and also to the sadness and devastation. The delivery experience can be as hectic and complicated as it is calm and peaceful.

He gathered his papers as we neared the end of our appointment. I noticed he was much grayer than last year, and nearly bald, but still the kind and calm man he always was. As he stood up and shook my hand, he looked me knowingly in the eye and smiled just like he did the very moment he handed me my perfect son, seconds after he delivered him, 18 years ago.

The Dark Cloud of Duchenne

I once read that life isn’t about waiting for the storm to pass but learning how to dance in the rain.

The diagnosis of Duchenne muscular dystrophy felt like a sharp sword that stabbed and shattered my world.

After that moment, a dark cloud hovered above my head, and would never leave. Every time I looked up, there it was, reminding me of the perils that lay before me.  It was a frightening time, to think that my perfect, sweet child of six who I loved with all my heart, was going to progressively get weaker, until he could no longer walk or use his arms. He would lose his ability to eat or breathe on his own, and on top of all that, his life expectancy was put at age 20, if he was lucky to live that long. I felt an anguish that only a mother could understand, and my world stopped.

How was I to navigate through this mess? There was no cure for my son, and no treatments. What was this disease? What did it all mean?  What about my other children? The dark cloud was all around me. That was 11 years ago.

To say there have been many challenges over the years is clearly an understatement. My earlier pursuits of undergraduate and graduate degrees were nothing compared to the task at hand. Not only did my husband and I have to learn about the complexities of Duchenne, but we also had to become experts in a short amount of time in order to fully understand and comprehend this disease if we were to save our son.

As we embarked upon this endeavor we would learn the language of doctors and specialists, and enter a world of genetics: DNA, RNA, dystrophin, utrophin. We conversed with scientists and discussed with neurologists, orthopedists, cardiologists, and pulmonologists, and even pharmaceutical companies. The list went on and on.

We had to educate family, friends, teachers, schools, physical therapists, and attend conferences. We became lobbyists, organized fundraisers, and served on charities. Eventually we would have to research wheelchairs and adaptive technologies, and later assistive devices such as coughing and breathing machines.

Over the years difficult decisions were made regarding drug treatments. The side effects of some of the drugs, such as cortico-steroids, were dramatic. Another, gentamycin, also generated toxic side effects. But there was little else.

Further along we learnt about a small molecule drug, and participated in a very promising drug trial. My son was poked and biopsied, and became a guinea pig for the generations to come after him. It turned out that for 18 months he was on a dose that was actually ineffective. The trial stopped temporarily.

Throughout, the dark cloud remained. My son was getting weaker, and despite all we were doing we had little choice but slowly to surrender to the relentless nature of Duchenne, which was steadily stealing his life away.

Although there have been huge advances with the unveiling of new drug trials, and many scientists coming forward with renewed optimism and hope, today there is still no cure for my son, and no treatments. Despite this new tide of optimism, the obscured reality is that our older boys are loosing their lives to Duchenne.

The dark cloud became darkest about a year ago, when my son, then 17, had a routine visit to his orthopedist. After an examination of his back and an x-ray, the doctor informed   us that his scoliosis had suddenly worsened compared to a few months ago. Because of the curve in his spine, his chest was being rotated and as a result was compressing the space available for the lungs and heart. 

The doctor told us matter-of-factly that my son would need to have two rods inserted along his spine, routinely called spinal-rod surgery.

·      After making the incision, the muscles are then stripped up off the spine to allow the surgeon access to the bony elements in the spine.

·      The spine is then instrumented (screws are inserted) and the rods are used to reduce the amount of the curvature.

He said that during the six hour-long surgery he would require a blood transfusion, since there would be much blood loss due to the incision along the back as well as in the bones. But he reminded us that surgery would give him a chance of living longer. He said we needed to act quickly due to my son’s decreasing lung function, which is detrimental during surgery and recovery. I could swear the blood left my veins.  I felt so desolate.

After a visit to the pulmonologist, the go ahead was given. My son’s lung capacity was at 40 percent. Although it is preferable to do this type of surgery when they are younger and stronger, the doctor said if we act swiftly the surgery is still safe. He lectured not to wait too long, as lung capacity will get too low, and then the surgery will be more risky.  He added that he couldn’t guarantee anything.

The doctor’s words echoed loudly through my mind, my thoughts in a spiral. The idea of spinal-rod surgery induced a feeling of desperation and fear, the fear of my son possibly dying through this ordeal, and possibly dying if we didn’t go through with it. And the recovery process, what about that? I didn’t want to lose him. There was no guarantee he would make it. We were at a crossroad, an impossible predicament.

The bottom line was the horrific realization that we may lose our son sooner than we thought. We were damned if we did and damned if we didn’t. How could I make such a decision?

For three months, my mind and thoughts were in turmoil and the dark cloud followed me into my dreams. I was supposed to make a decision. How? I had so much advice designed to help me through my dilemma: “Pray”, they said,   “Through God you will know”,  “It is God’s will”,  “I will support you”,  “It will be fine”,  “The right answer will come to you”,  “Reflect”,  “I know a good priest”,  “A swami”, “A monk”, “You must do it”, “You must not do it”.

I searched through the chambers of my mind for answers and solutions. It was the most difficult time for me, the most difficult so far on this Duchenne journey. I was now facing head on the ugly reality of this cruel disease.

The only answer that came was nothing. Did this mean no?  Had the universe responded with a no? 

After those months of what felt like an eclipse, I woke up one morning, and drew open the curtains and looked outside. I noticed the colors of nature, the sunshine. I looked up at the blue sky. I felt free. The dark cloud had gone.

I felt as if a weight had been lifted off me. I felt liberated although nothing had really changed. I realized that the burden of the decision had deeply affected my happiness, my very nature. I acknowledged my internal conflict and let it go. I let all my thoughts go. I decided that I didn’t want to fight and resist anymore with this disease. These were precious days and I still had my son. My perfect, sweet child of 17 was here with me, to touch, to hug, to love. Nothing was going to get in the way.

We never did have the spinal-rod surgery. My son is 18 in a few months. We are in the so-called “late stages” of Duchenne.

I was recently at a back to school night for my younger son, where parents and teachers get to meet and connect. I noticed during the five minute interval between classrooms, how the crowd of parents rushed along, headstrong, serious and focused and impersonal, not even stopping to say “hello”.

And then I wondered about the world of students, how in contrast they would amble along, chatting and laughing, carefree, drifting from classroom to classroom.

I thought about my son with Duchenne, how he has missed much of this experience since he is home schooled, and how he may appear as an outsider. I reflected on his positive outlook, his radiance, and his mind so full of ideas and dreams. As I continue to navigate through this sea of uncertainty, I realize that I need to steer a less rigid course and to adopt a less serious way of thinking, and to enjoy the journey rather than worry about what comes next. After all, the future is something I have little control over.

I stood somewhere in between the two worlds that evening of focused parents and carefree students. I stopped amidst the flow of the parents hurrying past me. I opened my arms wide, as if feeling for raindrops. Even though the dark cloud had gone, there were still going to be rainy days, there were still tough days ahead.  But I had a renewed lightness of being. At that moment, I realized that through my journey with Duchenne, I really had learned to dance in the rain.

It's Your Turn

It was my son’s first driving lesson. I stood and watched from the driveway as he carefully pulled away from the curb, his instructor next to him equipped with an emergency brake pedal. I was excited for him and as they disappeared around the corner, I couldn’t help but reflect upon my first driving lesson, and how I remembered it like yesterday.

As a teenager, learning to drive was one of the most exciting things I experienced. Once I got my license I used to enjoy the freedom of exploring, and would happily zoom along the narrow, winding country roads of Kent, and also through the tropical rain showers along the unpaved, potholed roads of Sabah. It was thrilling. It was an adventure.

I used to enjoy conversations that revolved around cars, V6 engines, torque, pistons, spark plugs and so on. Not that I understood the intricacies of car mechanics, but I knew about the best performing cars of the day. I drove my fair share of cars that were exciting to me.

The most exciting car I drove was when I purchased my 1966 Ford Mustang, 20 years ago. The car’s freshly waxed, Cherry Red paint glistened in the Californian sunshine, and its emblem, a shiny chrome galloping pony across the grill, leaped out at me, as if beckoning me to buy it. I knew that car was meant for me. Its engine roared and sounded powerful and rugged.

Every time I drove that car, I thought about the galloping mustang, with its mane and tail flying in the wind. The Mustang accompanied me on many an adventurous road trip north, south and from coast to coast across the United States.

I thought about the adventures in store for my son, as he embarked on his series of driving lessons.

A few days later, my son shared with me some difficulties he was having staying focused during his driving lessons. He asked me if I had any tips. That evening, I challenged him to a game of chess.

As we sat down across from each other, we set up the chess pieces on the board. I referred to my knight as a galloping pony. My son played white. As he moved his pawn forward I said to him that in many ways chess was a lot like driving. Chess has rules just like driving. In chess, you need to be focused, aware, accurate and decisive, just like driving. The pieces on the board, I continued, were like the cars on the road, unpredictable. One needs to be razor sharp at all times. One small error can be fatal.

I observed my son throughout the game and saw him think, analyze and forward plan his strategy, in a measured, calm and objective way. I suddenly realized he was gaining an upper hand in the game. After the constant cross checking of pieces and problem solving, an intricate game emerged where the pieces on the board appeared locked in. The game became intense but exciting, just like driving.

My queen swept across the board and took his bishop. Intentionally, he put my king in check. I maneuvered my king to the corner square. With precision, he took my galloping pony. He won the game that evening.

After my son’s next driving lesson, he said with confidence how he felt more comfortable, aware and focused on the road this time. He added that he has started to really enjoy driving.

Under a large light green, faded cover, in a garage, sits that old Mustang raring to go. It is still as shiny and sparkling as it was that first day I set my eyes on it. The galloping chrome emblem still leaps out at me. I have kept it as a gift for my son to drive. Now, it is his turn. It is his adventure to have.