Pain is a symptom, and when we identify or understand what causes it, we can decide what needs to be done to heal or live with it. My reality is chronic pain.
Chronic pain is there all the time, or it may come and go. I have peripheral neuropathy, which means that the pain I experience is ongoing. It's there all the time.
There
isn’t an instant fix to healing from any form of pain. It’s a gradual process that starts with small, incremental steps to build a capacity to handle the challenge. Every time we successfully cope with a wave of pain, we
strengthen our internal sense of recognizing danger and seeking safety –
whether it’s taking a painkiller for physical pain, visiting a friend for
emotional pain, or reading for mental or spiritual enlightenment.
My internal landscape has shifted because of the constant pain. Over time and with practice, I've learnt to create a haven within myself. I've learnt to move from one small
breath, one sensation, and one moment at a time toward victory.
When I found out why I was suffering
and that there was no cure for the chronic pain, I was forced to become patient
and kind to myself. It took several years to understand the importance of
patience and kindness, but I eventually learned the lesson.
Acceptance
is a life-long journey. Part of this journey to accepting life with chronic
pain led me to the old habit of writing to process the diagnosis and cope with the reality of living with it.
I started writing my autobiography in 2023 and I can proudly say, I'm almost finished writing, ‟Padded Foot, Encumbered
Mind”.
I
want to share the Prologue with you.
Prologue:
My Precious
The
Calm and the Chaos
There’s
a wonderful sense of inner calm that accompanies good health. Often, we don’t
fully appreciate this calm until it’s disrupted. Whenever I see a calm body of
water, I can’t help but connect it to the concept of health. In the peaceful
depths of health, we can float and absorb its peace.
When
we feel ill or experience pain, our inherent instinct is to survive whatever is
disturbing the calm. The calm is then replaced with chaos – fear and
uncertainty.
Once
we know what the problem is, we can address it and find healing. After healing,
only a sense of the calm we once knew returns. We remain wary because the
initial scare imparts a sobering realization: death is inevitable.
Reflecting
on the Chaos
I
was diagnosed with peripheral neuropathy in 2019. It marked the beginning of a
challenging journey of living with chronic pain.
For
a long time, I believed that my chaos began when I received the diagnosis. This
led to an obsessive loop of pondering what I had done wrong to end up with
nerve damage. It was only after I discovered that it was a potentially genetic
illness that I found a sense of calm amid the chaos.
A
Constant, Silent Companion
I
can’t remember what it feels like to be without pain. I only know that its
constant presence has changed my life.
At
the end of 2019, I doubted my ability to continue teaching into 2020. The
unforeseen arrival of COVID-19 and the national lockdown offered respite. I
rested, but the pain persisted, unabated.
I
returned to school in July 2020, and, for the rest of the year, the pain
continued to impede my performance. Most of my responsibilities were stripped
away, leaving only one: the act of teaching. By mid-2021, the pain was
affecting my ability to focus during lessons, and I realized that my work was
suffering. I also developed a gnawing guilt because my duties had become the
responsibility of my colleagues. The pain, the lack of focus, and the guilt
compelled me to initiate the process of medical retirement, and I embarked on a
period of sick leave.
For
almost a year, I was engulfed in self-pity and withdrew socially from all
aspects of life. I soon felt disconnected from others. The everyday activities
I once took for granted, like driving or walking through shops, became elusive.
A
Predetermined Destiny
I
used to think of health merely as the absence of illness or weakness, a static
destination I could either reach or miss. For example, exercising regularly
would mean I’m fit and healthy, and sticking to a balanced diet would add years
to my life. I never saw health as an ongoing journey.
I
never exercised and thought it was okay because I was making good choices by
avoiding tobacco and alcohol – overlooking my greatest flaw: my sweet tooth.
Friends in the past, especially when I was young, coaxed me into joining them
in various activities, like participating in aerobic classes or jogging, but I
never enjoyed it because it always made me feel ill. Perhaps an underlying
condition thwarted my efforts to exercise and become fit. I cannot say. All I
know is that swimming was the only exercise I could enjoy in my youth without
feeling depleted in every aspect of my health – physically, mentally, and
emotionally. There were times before, during, and after school galas when I
didn’t feel well, but I always assumed it was related to the stress of competing.
Even
if I had followed a path of nurturing my physical health, it wouldn’t have
changed the outcome. Being diagnosed with a genetic illness renders the
finality even more pronounced because my destiny was predetermined from the
moment of conception. Does this knowledge make acceptance easier? No, it
doesn’t. I move periodically through the stages of loss: denial, anger,
bargaining, depression, and temporary acceptance.
A
New Normal
Living
with chronic pain has reduced me to a state of wanting to move only when I
must. It’s not a feasible option. Every doctor I’ve ever seen has urged me to
move, not with the pain, but through it. If you’ve never lived with chronic
pain, you won’t understand what moving through pain is. While this seems to be
an impossible mission, I accomplish it every day.
To
help you understand what moving through chronic pain is like, let me illustrate
the experience. It’s not like water gushing through a pipe, where everything is
confined to a single path. While our bodies, veins, and nerves might seem like
pipes, pain doesn’t channel itself in such a linear way. Instead, it radiates.
Imagine the aroma of food in the air – it permeates the space, becoming all you
can smell. Similarly, pain permeates the body, or a specific area of the body,
and becomes all you can feel.
Moving
through the pain means you are absorbing the experience. No matter what you
think, say, or do, you diffuse through the pain and try to function as normally
as possible.
My
Autobiography
The
hardest thing for me is living with chronic pain. It’s probably the main reason
why I decided to write this book. I want it to serve as a tool for
introspection so that I can reach the destination of accepting my fate and move
with the pain and through it as gracefully as I possibly can.
This
book was born from a personal need for closure. I don’t want to waste precious
energy, time, and courage dreaming of pain-free days. I want to make peace with
what has happened and live my life fully.
In
sharing my story, I hope my hardships and inner strength to move forward will
empower those who suffer from the chaos of ill health and perhaps motivate them
to share their story.
I
believe that our shared stories pave a road of empathy and understanding. We
contribute to a collective strength, where all our stories come together to
create a powerful testimony of human resilience and perseverance.
My
autobiography is dedicated to everyone experiencing invisible illnesses,
chronic pain, and other challenges that disrupt their calm. I hope it will be a
fountain of inspiration, a beacon of motivation, and a source of comfort for
everyone who reads it.
The
title: Padded Foot, Encumbered Mind
Every
step I take is a negotiation, a delicate balance between the relentless demands
of pain and the necessity of movement. My journey through life has been marked
by different painful experiences, peripheral neuropathy being the worst and
most enduring of them all.
My
feet are the frontline soldiers in an unending battle against discomfort. For
everything that needs to be done, I must be mentally prepared. My mind pads and
protects my feet because they carry the weight of my world, both physically and
metaphorically. The simple act of walking has become a strategic endeavour, and
each movement is calculated to avoid exacerbating the pain. Time and distance,
once measured in steps and strides, now hold a different significance. How long
will it take to accomplish what must be done, and how far must I push myself to
reach my destination? These questions, seemingly mundane, now shape the
contours of my daily existence, guiding my every decision and action. What
others may take for granted – unhindered mobility – has become my mental
encumbrance, a constant reminder of the limitations imposed by my condition.
Thus
begins the story of ‟Padded Foot, Encumbered Mind”, my story of resilience and
unwavering determination to keep moving forward.