A Never Ending Problem

In the month of July or August 2023, I started noticing some white substance in my urine. Assuming that it might be semen, I initially ignored it. That was a mistake!

Around two months later, the presence of the white substance increased, and I experienced the following symptoms:

• Bloating

• Acidity

• Sometimes, mild pain in the groyne

After consulting my physician, the urine test result revealed that I had a severe urinary tract infection (UTI). 

Though the medication prescribed helped cure the infection, it wasn't long until I had a relapse. 

During my visit to the urologist, He asked if I had ever experienced any UTI symptoms in the past, and while I said, 'No,' I realised that it was due to the use of pampers that I never noticed.

For example, when I experienced pain in the groyne, I always assumed that it was probably because the diaper was too tight.

Also, because I had been so dependent on my mother's intensive care over the years, I didn't always feel the need to see a doctor every time I was sick.

Later that day, an ultrasonic test revealed that the infection was due to urine retention, and the doctor recommended a catheter once the infection had cleared.

As previously stated, in the past, the catheter wasn’t considered due to its potential impact on the bladder and kidney. However, now the doctor said that frequent relapses of UTI could lead to kidney problems.

Honestly, I was in a dilemma like never before. Either I get the catheter and potentially risk having a kidney infection, or I don’t get the catheter and still be at risk of getting an infection. Either way, the worst seemed inevitable.

To make matters worse, this all happened while I was preparing for my college final exam.

What should I do?

From experience, I can confirm that in such a situation, it’s normal to have anxiety, and it’s always best to talk to someone (a friend, family member, or therapist).

Other options include watching a movie or TV show, listening to music, reading, etc.

In conclusion, don’t ever ignore the signals the body gives you. If you sense something is wrong, always get it checked.

The Struggle Continues…

Even though switching from diapers to urinary drainage bags has improved my life, my problems are far from over. Due to wear and tear, the urine leg bag attached to my calf frequently leaks. Sometimes, due to body movement, the pipe connecting the leg-bag to the silicone funnel placed over my genitals, or the elastic straps holding the funnel in place, gets disconnected, resulting in a mess. It gets awkward and embarrassing, especially when I’m in public.

There are also times when the urinal aids I use aren't available online or in any drugstore for several days or even weeks. As a result, I'm left with little choice but to substitute or go back to using diapers. Substitute products like the urinal funnel sometimes cause infection due to their poor quality.

How does it feel and what do I do?

Honestly, going back to a phase of a life that you’ve evolved from can be very frustrating. Under such circumstances, I remind myself that I didn’t choose to be born with a disability and that some things in life are simply beyond my control.

I try to keep myself occupied with a variety of activities to distract myself from my current predicaments. Some of these activities include:

• Focusing on work and studies.
• Watching a movie, TV show, or videos of interest on YouTube.
• Listening to music.

Sometimes, talking to a friend or family member you're comfortable with, or with someone in a similar situation, can also help relieve the stress.

Here are some suggestions for managing oneself or avoiding an unpleasant situation:

• Empty the urine leg bag every 2-3 hours, as waiting too long can increase the likelihood of leakage.

• When heading out, always carry an extra pair of pants, underwear, and an extra-leg bag. If you are going to be out overnight, then a urine drainage bag and a small bucket should also be carried.

• Keep an eye on your urinal aids and restock them as needed.

Finally, I'd encourage anyone in my situation to recognise that the problems we face as a result of our physical condition, whether it's a shortage of assistive products or the embarrassing situations that occur due to incontinence, are an unfavourable part of life. The only option is to accept what can’t be changed.

Living with Spina bifida

From childhood through late adolescence, I relied only on homemade cloth nappies as a urinary aid. While this choice was inexpensive, it proved to be unsustainable for long-term use as I frequently experienced urinary and skin infections.

In 2005, I started using adult diapers instead of cloth nappies because they were a better solution. However, with time, my diaper usage increased from two to four or five a day. This put a strain on my family's finances because my diapers would cost around Rs. 10,000 each month on average.

Coming from a middle-class family with no fixed income of my own, I knew that this couldn’t continue for long and I needed to explore other options. So in the middle of 2018, I started using urinary drainage bags. While this isn’t a 100% solution to my problem, it’s definitely an upgrade over the diapers. Not only am I able to manage my life better, but the expense of the urinal aids now comes to approximately Rs. 5000/year.

A catheter was never considered due to the risk of bladder and kidney infections.

Life going forward

Whether it was learning how to walk, ride a bike, persistently pursue my education despite several shortcomings, or simply trying to live a normal life despite having to rely on urinal aids, the important lesson that I’ve learned in life going forward can be summarized by the following quote:

“Just because you took longer than others, it doesn’t mean you’ve failed.

What matters is one’s persistence to live & not exist.”

From learning to walk to riding a bike

During the early years of my life, the only thing that allowed me to move around were my two hands, which I used for crawling. As I grew, crawling was no longer a viable option as I would sustain injuries. This motivated me to walk with the help of a walker. After that, there was no turning back. Much later, I trained myself to walk with a pair of elbow crutches and, with the help of my family, I began riding a scooter, which is customized for a physically challenged person. This wasn’t easy because I had to earn the trust and confidence of my protective family, which included my adoring and doting mother as well as my generous, yet overprotective older brother.

My First Riding Experience

I was both nervous and excited during my first riding experience, as this was a turning point in my life. On Day 1, I began training with a friend of mine, and I learned the hard way that things are not always as easy as they may seem when I had a minor accident that sprained my wrist, which then delayed my next lesson for about a week. As I was recovering, I searched the net for ways to make my riding experience safe. This included a new way of throttling in which the rider’s index and middle finger are always placed on the brakes when riding.

This technique provides two important benefits:

1. It removes the split-second delay in applying the brakes in an emergency.
2. It helps the rider, especially a beginner, control the bike’s speed.

I also purchased elbow and knee pads online that gave extra protection in addition to the helmet. After resuming training, it took me 7 days to learn how to ride, and I was ready to apply for a permanent license.

Living A Normal Life.

Once I got my permanent riding licence, only a few things prevented me from living my life. For example, I attended coaching classes at a private institution, which helped me clear my senior secondary exam.

I would occasionally go to the movies and treat myself to pizza or whatever. The movie theatre I prefer is "Inox,” which has wheelchair facilities and an exclusive toilet for physically challenged people.

One of the best experiences after learning to ride a scooter was my trip to Rajbagh Beach, a beautiful beach down a mountain in South Goa. However, due to my physical condition, it always seemed impossible.

Honestly, the walk up and down the mountain was beyond exhausting, but the joy of achieving my goal was far greater. I look forward to taking on many such challenges in life.

Rajbagh Beach 2017

Pursuit of education & career

As the years went by, my efforts and will to study increased considerably, and I finally got my first custom-built tricycle in 2006, after which I managed to get myself enrolled in a special school called “Gujarati Samaj Educational Trust for the Handicapped.” It was during this time that not only did I have a social circle, but I also discovered that I wanted to be a special educator and help shape the careers of people with special needs. Honestly, there’s nothing more satisfying in life than being in a profession that allows you to motivate someone via your own life experiences.

In the year 2009, I enrolled myself at the “National Institute of Open Schooling” (NIOS), where I completed my secondary and higher secondary education. I then pursued a bachelor’s degree in Arts through the “Indira Gandhi National Open University (IGNOU).”

The challenges I faced during my pursuit

Throughout my secondary and senior secondary school years, I encountered many obstacles, which were caused not only by my physical disability but also by the fact that I had lost out on a typical school experience during the early years of life.

For example, I was unable to find a home tutor who was familiar with the NIOS syllabus, particularly in subjects like psychology and business studies.  Going to a private institution was also not an option at the time because I had to frequently change my diapers. This left me with no other choice than to study on my own.

Because the exam centre allotted to me was far away from where I lived, we had to hire a private car. This was expensive as we had to pay approximately Rs.2000 each time we travelled. Furthermore, an exam supervisor once tried to persuade me and my mother, who accompanied me every time I went to answer my exam, to pay a bribe in exchange for passing me. Of course, this was unacceptable to me as I intended to earn my qualification regardless of the rank or percentage.

The inability to cope with the syllabus, a lack of assistance, and several shortcomings led to a momentary decision to discontinue my studies. However, I found it hard to live with myself knowing that I had given up on my dream of becoming a special educator. So, after a break of one year, I once again attempted and successfully cleared my secondary exams in 2014. Due to similar circumstances, it took me another 3 years to complete my senior secondary education.

My struggles were far from over, as when I went on to enrol myself for a Bachelor’s degree in Arts course, I was told that unless I opted for BTS (Bachelor in Tourism Science), I would mostly have to study on my own. Refusing to give up, I chose to self-study.

Trying to achieve financial independence

While continuing with my studies, I earned my allowance through several activities like working as a freelance in-house SEO, writing articles for an up-start website, and later, offering internet services to the people in my neighbourhood in return for a small fee. These services include payment of payment bills, mobile recharge, online money transfer, etc.

My Early Childhood Experiences

Despite the physical disability, my life initially felt quite normal as I attended kindergarten at St. Anthony High School. However, that feeling would be short-lived as, due to incontinence, I frequently needed to change my diapers, and this also made it difficult for me to be socially accepted by the other kids in class.

Eventually, the lack of facilities at the time and financial problems led to my parent’s decision that it was best to home-school me. There went my chance of having a normal social upbringing. My father, who worked as a sales representative at a pharmaceutical company, was also a part-time tutor who taught me the basics of math and the English language. I gradually developed an interest in leisure activities like drawing, painting, listening to music, and watching TV. These helped me keep my mind occupied when I didn’t have anyone to play with.

However, I wasn’t always lonely during childhood, as I was fortunate to have the company of my cousins. During the whole year, I always looked forward to summer vacations, where the whole family would come together at our ancestral home for about two months. While my physical limitations prevented me from doing things like playing cricket or going on hunting and fishing trips, I did enjoy playing board and indoor games. Furthermore, the barbeques and family picnics we held will always be one of my favourite childhood memories.

Even though most of us cousins are now adults with full-time jobs and occupations, we try to get together as often as possible to have fun and create new memories.

My Life's Journey

My life’s journey began on December 30, 1988, when I was born with spina bifida meningocele, a life-threatening birth condition.

My parents were advised by the doctor shortly after I was born that I needed immediate surgery to remove a cyst on my spine. The cyst contained cerebrospinal fluid, which would accumulate over time and eventually burst if not surgically removed.

The next day, my parents took me from South Goa to Goa Medical College (GMC), the most prestigious hospital in Goa, India. They were then advised to travel to Mumbai because no doctor could undertake this complex surgery.

My parents had been going to doctors and hospitals since the beginning, but due to various factors, the surgery could not be performed.

According to the doctors, I would either die during surgery or the fluid from the cyst would transfer to my brain, which would result in severe health issues. I also had several health issues like jaundice and diarrhoea, which added to the risk. Thus, my parents decided not to go through with the surgery and left my fate in the hands of God.

For about 9 months, the cyst kept growing in size, and my mother took all the necessary precautions to ensure that the cyst didn’t burst. However, one day, the cyst did burst and an emergency surgery was performed.

Being physically disabled, not only do I use a pair of crutches and a wheelchair to move around at home, but I also have to rely on urinal aids due to a lack of bladder control.