Rachit Shah
I write again, dedicating another article to my pissed off attitude towards Healing & continue from where I left my last written case, Battle with Isaac Syndrome & my struggle for a cure but before that a quick flashback:-
A gigs world transformed into serious profiling in March16 when I got diagnosed with a rare medical condition, Isaac Syndrome even called Neuromyotonia (a diverse disorder as a result of muscular hyperactivity) and Membranous Glomerulonephritis (a slowly progressive disease of the kidney).
My encounter with time had just started and I had to let go working as an Investment Banker.
From Steroids to IVIg to Plasmaferisis to shots of ACTH injections to pain killers to immunosuppressive agents to intestine related medicines to pro-biotic to some alternate medicinal streams, as high as 38 pills were a part of my daily food platter with enough food restrictions due to side effects like shooting sugar levels, fluctuating blood pressure, IBS, disturbance of stomach lining, diarrhea etc
As medicines & treatments have limitations, my health has proved a tragic experience wrapped in bonkers, making me crawl through broken glasses from time to time. I choose to focus on this journey & not the destination.
As I cant go back to my mothers womb, Id better learn to be uncomfortable & fight back. To do otherwise is to settle.
Link of this article https://www.iimidr.ac.in/research-publications/indore-management-journal/current-issue/ titled Isaac Syndrome.
Post Plasmapheresis?? It is similar to Dialysis. The medical procedure is designed to remove disease-causing agents or antibodies by extracting, treating & returning of blood to the body.
Post discharge it took me good 20 odd days to normalize as I encountered weakness & pain in thigh &back region, all medications being like before. There were times when I felt all my channels through which energy flows within the body were removed & started doubting the success of my procedure. I believe it was a matter of time when in Feb18, this vicious cycle saw some light.
I have always been a strong believer in ideologies which support repairing the roof when the sun is shining bright & therefore post the ministration in Mar18,my focal point of convergence was searching for Anchors to help make a shift from symptomatic convenience to exploring a more enduring way to healing.
Since generations, Allopath medications have rubbed shoulders with our Genotype in ways where the two are inseparable but firm-believers prefer a deaf ear to the din & be loyal to Mother Nature.
I remember watching an epic 90s film, Forrest Gump again, but this time this rejuvenating experience took my imagination on a ride.
I decided to take up Table tennis (a drug- free therapy) as players on sports field and those battling chronic ailments have much in common. Even NASA studies say table tennis is the most difficult sports to practice because of its complexity in the use of muscles. Therefore thought of putting some muscle at play & experience a popular theory called Sports Medicine (a specialization that studies medical related principles with sports science to prevent injury and promote healing).
It was not only to change my idea of having fun but simultaneously pound reminders to my psychometric abilities that any suffering is as constant a phenomenon as temporarily losing a game. No situation or circumstance in life is permanent. As Walt Disney once said the difference in winning & loosing is more often not quitting.
Link of this article written in March18 —https://strandls.com/idea-fun-change-isaac-syndrome/
To my surprise, on a May18 morning some cousins made a stopover to clear air on my so-called big picture work legacy when they heard I was gathering all the muscle to get back to work in-spite of my energy & body pain levels having oscillatory pattern throwing enough surprises from time to time.
I had worked for 12 years with well known Investment Banking institutions & still get nostalgic about those early morning drives with soothing music, the office ambiance, the aroma of coffee, meeting like-minded co-workers, social and behavioral reinforcements etc
One of the major side effects of some Rare Health Condition is to be on the shelf. Especially in countries like India, work from home is hardly an option.
During my journey I was pleased to know that people around me were educating themselves with fascinating concepts & theories to pacify &find solutions for my bailout:-
- The Spoon Theory which explores the difference between those with limited energy reserves vs without to get through their day.
My learning: – Any drastic change in life is difficult to accept. It is unimaginable that something which is gracious plenty for others would be within limits for me. It taught me to be conscious about prioritizing time.
- Convalescence, means gradual return to health while one still needs time to recover from illness, usually by resting.
My learning: –moved goalposts to realistic targets &started believing in patience being virtue.
- Support beyond the Pill is adequate health insurance, compulsory Corporate Social Responsibility (CSR) initiatives, work from home facilities, a supportive Government etc
My learning: –optimum utilization of any resource can work as a support system during the treatment duration & help ease financial, social & personal enforcements.
Link of this article written in May18 — https://strandls.com/professional-life-of-a-rare-disease-patient-by-rachit-shah/
Cutting to the chase, lets not question the intelligence our body. Any incremental risk appetite with supervised trials & errors can be of fringe benefit. Its individualistic how one relates to his/her body and observes whats acceptable. Remember, there is no universal law to healing.
Deep buried knowledge secrets to being healthy wrapped in the form of natural medicines from our ancestors have undergone renaissance due factors like globalization, society acceptance &their importance to millennial.
As I keep my pen down & patiently wait for the Midas touch, my only request to readers would be to share any conducive food for thought, as bailout is not only an option.
Competing for a trophy is old, lets walk the talk and get counted.