Isaac Syndrome: My ongoing battle with the disorder and why I refuse to let it win

By Rachit Shah

‘’I would like to see ANOTHER well articulated, inspirational piece of work coming out soon. Your endeavor to help others should act opposite to the Law of Diminishing Marginal Utility ’’ said my readers, who were the influential spirits behind me keeping up with the flow of communication on Isaac Syndrome, a diverse disorder caused muscular hyperactivity. I battle with this disorder everyday, and this article accounts what I’ve learnt so far.

My previous case studies were my attempts to pen down information on the various aspects involved with dealing with Isaac syndrome, while coping with daily life issues, and also to inspire other patients to stay strong in the face of such adversity.

Therapy in sports

A couple of years ago, I had taken up table tennis to recover successfully from my workload, which I found to be a rejuvenating experience. It was, to me, like a drug-free, high-vitality sport, without the risk of collision injuries. When I decided to get back to the sport, this time, to try conquering my health setbacks, with the only danger being the safety of my mum’s best china—I found my racket had gathered dust.

So, that’s how I found myself, one fine day, getting a table tennis set installed at my place, in efforts to overcome years of pain and stiffness in my muscles. The initial assessment of my hand movements was made by a close friend, who qualified in fine motor skills, and had experience in sports medicine.

Sports medicine is a specialisation, which amalgamates the fields of medicine and fitness. It studies medical-related principles with sports science, to prevent injury, and promote healing.

In my efforts to not leave any stone unturned, I visited a qualified table tennis specialist to get some professional advice, before taking up the sport. The only thought that was constantly running through my mind, was for me to be at my best.

So far, my longest rally in the game, without a break, has been around 6 minutes. Although the experience almost took me to some celestial space, it also exhausted me the very next minute after my body gave out. Credit: Flickr Commons/Arya Ziai

Your idea of fun will change

Finally, the day arrived when I decide to try out my new racket, and the newly installed table. I decided to wear my activity tracker band to record my personal metrics. I found it was way ahead of everyone and everything else in gauging my personality, and constantly pushing me to new limits. I realised that although recuperation methods are faster nowadays, it’s still essential to improve flexibility as a crucial part of the overall treatment regime.

All of a sudden, my muscle memories got activated, and reran old episodes of playing with friends, where we roared, ran around like hooligans, were as loud as possible, and ate our favourite snacks during breaks. I felt grateful for the moment.

I started to concentrate on watching the ball bouncing towards me from the other side. It abruptly changed directions, and I started to lose sight of it in a split second. However, I slowly indulged myself, to prove that whatever I lacked in talent, I could make up in sheer stamina. Initially, this felt almost as impossible as dodging a bullet—finding myself on one side of the table, trying hard to beat my opponent. But, I took it as any other form of therapy. During playing sessions, I still have to take unwanted breaks but, I like to believe that my resistance is slowly building up. If nothing else, it makes me feel like a warrior for a brief amount of time. Every shot I hit, takes me closer to feeling a bit healthier.

During one of my table tennis sessions, I experienced my worst nightmare—a severe back spasm—which knocked me down for three days. The incident helped me realise what NASA studies have claimed—that table tennis is the most difficult sport to practice because of its complexity in the use of muscles, with more than 80% of muscles being engaged from feet to neck. However, my desire to bounce back was so powerful that it raised my spirits on the fourth day. 

So far, my longest rally in the game, without a break, has been around 6 minutes. Although the experience almost took me to some celestial space, it also exhausted me the very next minute after my body gave out. At present, I’m still attempting to establish a strong synergy between my body and the sport. 

My story raises a couple of interesting questions, at-least in my mind, assuming the current circumstance. Firstly, when, and how did my game change for better? Did my health set-back leave me stronger than before? The only answer was to keep learning and build stronger experiences.

The most important lessons I’ve learnt

• Change is indeed possible.
• One can use today’s technology to your benefit. 
• Focus on postures can reduce pain and increase fun. 
• Taking up a sport can add to your disciplined lifestyle. 
• Re-educate yourself about your condition and modify habits. 
• Understand the difference between what you “should” and “can” do.

The Shadow Analogy

1. I started to draw out analogies between taking up a match in table tennis and Isaac Syndrome a while back. My conclusion was:-
2. A person who is grateful enough of his defeat in a match or his pain, is set to win, and recover.
3. If it doesn’t challenge you, moving up the ladder is like dreaming with your eyes open.
4. There are two ways to conclude a match or battle a disease, you’re either in or out.
5. Being deprived of winning a game or any suffering is just a temporary phenomenon, it might last for some time. But, if you quit, it becomes a habit, and lasts forever.
6. A thin red line—for us to move faster in life, sometimes, situations need to get out of control.
7. Heroes in the field of sports, and those battling any ailments, have much in common.
8. Find something that gives you joy, and the joy will burn out the pain.
9. Be in control—your grip is an important aspect, whether in a game or in life.

 

In short, in life, competing for a trophy is old news. Instead, let us walk the talks, and make our lives count for something. This article is my humble attempt to ignite the national conversation around alternative, drug-free therapy.