Adarsh Speaks

Change- The Inevitable

For Better or Worse?

There are numerous definitions of the word ‘change’ in the dictionary, but if we break it down intuitively, ‘change’ essentially means something ‘becoming different’. In this write up, I am going to relate change specifically to life. Many changes happen in life which are observable. Like how we can observe how an infant grows into an adult. It can also be unobservable like life experiences creating a change in one’s personality and though processes.

Change can be either negative or positive, or even a blend of both. On the positive side, it can imply anything pleasant like securing your first job, getting married, starting a family, winning a lottery. On the negative side, it can leave a bitter taste like being fired from a job, an abrupt divorce, or losing a loved one. one. Change can also be an in-between happening like moving to a new city, moving in with a friend, or staying with parents.

There is also a third type of change which, though noticeable, is processed internally. This is the change brought about by unusual or life-threatening circumstances and situations. Given the context of this change, one has to acknowledge the fact that Change is inevitable – it will happen for sure! It is just how we process this change or from what perspective one look at this ‘change’ that defines who we are as individuals. If one looks at ‘change’ negatively, one may get stuck into a vicious loop of negativity and the more negatively one looks at ‘change’ the more one is sucked into this loop. Whereas if one were to look at ‘change’ positively, which is easier said than done, then the definition of ‘change’ can be morphed into whatever we want it to be. Change can invariably be measured as glass half empty or glass half-full.

Let me illustrate the analogy through a few examples from my own life. These examples pertain to my condition of Duchenne Muscular Dystrophy (DMD) and the consequent physical changes. Thanks to the transparent and open communication with my dad since I was a kid, I learnt what to expect as I grew older. I came to terms with this condition at age 5. I knew I would get weaker as I got older. I knew I would stop walking one day. As I got older and more mature, I was also prepared for newer obstacles and other difficulties like restricted mobility, becoming dependent on a caregiver, using a BiPap machine at night, increased GI issues with dietary restrictions, not being able to turn in bed, etc.

Looking back, I feel I am now I am in a place where I can look back on how I dealt with these changes and at the same time I am in a place where I can envision the future on what all new changes, I may have to deal with going forward. How was I able to handle all these ‘CHANGES’? I wonder. The trick is quite simple to say but very hard to put into practice. It is about cultivating a specific mind set. But as you practice this concept, it gets easier and easier. What is this concept you may ask? It’s simple. It is about looking at the glass ‘half-full’.

Let’s take a powerful example of this. The transition of me from walking to using a mobility device. When I was around 12-14 years I gradually slowed down in my walking. Over the years I had frequent falls, had difficulty getting up, increased leg pain, and eventually came to a halt of not walking at all.

I had driven mobility scooters before, but never had my own. We (the family) wanted to avoid having my own mobility scooter lest I become too dependent on it. Now the time had come for me to start using these devices to move around on my own rather than sit in one place and depend on someone to assist me. Now here I was where I couldn’t walk anymore, but hey! I now get to ride around in this awesome scooter, which looks like a mopad. Which 12–14-year-old boy doesn’t like to ride a mopad or a motorbike? I enjoyed driving it especially in malls or smooth open places where I could go fast. The fastest I could go was in comparison to an adult walking fast (that’s all), nevertheless it was fun. I even learnt to do a small jump while driving the scooter, which I loved to show off. Looking back on it, now I know that it was my dad’s effort behind all of this that made the transition smooth and fun for me.

In September 2017, there was a sudden set-back. I had an accident resulting in 3 fractures in my shoulder and hips. After the surgery I had a crisis followed by severe breathing issues. I was put on an invasive ventilator. I took almost a year to recovery physically and another 6-8 months to come to terms with my situation. Anyways, long story short is that “change” was challenged here incredibly. Obstacles that I knew I would slowly have to transition to and deal with one by one were suddenly imposed upon me in all directions and multiple changes. All at once.

After my physical recovery, I had to deal with these ‘changes’ head on. The major changes are mentioned below:

1. I had to become completely dependent on a care giver who had to be around me 24/7
2. I had to adapt to an electric wheelchair (different from mobility scooter)
3. I had to use a urine can whenever I had to relieve myself
4. I couldn’t turn sideways in my sleep anymore
5. I had to use a BiPap machine at night

Now at that time, after I recovered physically, I had become very quiet. I wouldn’t talk much, I wouldn’t message my friends or answer their calls, and everyone kept saying I wasn’t my usual self. Me being from a psychology background and having a dad who encouraged self-reflection since I was a kid, I questioned why I was acting the way I did. For months I couldn’t come up with a reason. My family and I went on a long trip to Italy so we could get away from the traumatic year we had faced and hoped a change of environment would help me regain my poise.

I decided to give it my best shot and also helped plan the itinerary including booking a wheelchair accessible van that would fit my large family. Somewhere during the trip, I returned to my humorous talkative self. After ‘coming back’ literally and figuratively, I still hadn’t found an answer to my question. Then during a talk with my college classmate in my Bangalore apartment balcony, it suddenly dawned on me. This whole time I was fighting with my relationship with “Change”. I realized that so many ‘changes’ had hit me all at once that I needed time to address each ‘change’ one by one. Over the months I was able to come to terms with my ‘changes’. All this while my mind was addressing all of this subconsciously, and I just needed to give it time, which I did.  The mind is very complex in that way, it was making me be silent, but it was working in the background continuously processing. Take my word for it. At times we just need to listen to our mind (and body) and give it time.

By now most of you may be wondering how did I tackle these unsurmountable “changes”? Had I taken them negatively, I would probably be somewhere sulking away. Somewhere during my journey to recovery, I have positively changed my mind set about these changes. The first and foremost challenge was to have a caregiver 24/7. Initially it is difficult to have someone all ways around you. You feel your privacy is under threat, and you feel ‘watched’ all the time. My family addressed this directly by letting the caregiver know to be there at calling distance, but at the same time leave space for my comfort zone… essentially be there, but not be there! Also, I cultivated a mind set to challenge this ‘change’ fueled by a positive outlook rather than a negative view. Hey! I have my own personal caretaker. In a sense I have my own personal butler like Batman’s famous butler Alfred. I can trust him whenever I need help, he can get me my favorite snacks from the kitchen, anything I need is a snap away. I mean how many people in this world wish they had one. I have it! I better make the most out this situation!

About the transition from a mobility scooter to an electric wheelchair. I could have had a negative approach complaining that a toy-like device has now been replaced by a device that shouts out “wheelchair”. I could have complained about the way it moves, the buttons, the seat, and the like. But I chose the other course of action open to me. Of course, I had a hard time transitioning, but there were many good things about the transition. Now if I am sitting at a table and someone greets me from behind, I can immediately turn around in my radius and talk to them face to face. Earlier, many people, especially kids, would mistake my electric scooter for a toy and presume I was a pampered kiddo riding a device, they would come running to press the buttons and invade my privacy. Now, when people see the wheelchair, they are careful around me, and they are less judgmental in their behavior. My wheelchair is safer, faster, and can fit directly under a table. The support system is more beneficial for my legs and back. All these are tangible rewards that I relish in full measure.

Before my accident, I was able to go relieve myself by driving my scooter up to the rim of the toilet. This gave me a sense of independence, but every time we went out, we had to make sure the restroom had no steps. This was a huge nuisance, especially in India. After the fall, I had to be dependent on someone to hold the urine-can for me. At first, I was like how is this going to work in public, the chances of having a spill are more, and that even for a small natural process I had to call someone. This was a situation where I was forced to deal with change, but once I adjusted to it, I started looking at the situation in a positive light. Now I don’t have to worry about finding an accessible restroom, I can pee wherever I want to. I can relieve myself even in a crowded place by going a corner and having a friend block my wheelchair. In a way it is actually easier than before.  I wish I had gotten used to using a urine can earlier in my life. Had I clung to the negative view, I may have stopped going out completely resisting the new change. What a tragedy that would have been.

Finally, coming to one of my major life changing situations, using a BiPap machine at night when I slept. This is more of a preventive measure to give my lung muscles a break at night especially since we tend to breathe harder when we sleep. The BiPap just pushes pressured air periodically in sync with our breathing and helps push out carbon dioxide. There are 3 different types of masks available for use depending on each user’s preference. I got adjusted to the mask that just fits over your nostrils, but a large tube hangs below your nose which connects to the BiPap machine. It took about a week or two to adjust to it and now it has become a normalized process. Of course, to make the process fun, the family (including myself) made fun of me teasing me that I looked like “Lord Ganesha” or sounded like “Darth Vadar”. Once I become completely comfortable with it, I noticed a slept better. I later learnt that people with sleeping disorders also use BiPaps to improve the quality of their sleep. So, I got the reward of my positive outlook. Even though every night I have one more process, to put on this device and the fact that I have to take it wherever I go, the plus side is now I enjoy sound sleep and feel relaxed and rejuvenated every morning.

To end on a short phrase:

Change is inevitable, whether we like it or not,

but how we define ‘change’ defines who we are!