My Globetrotting With TM

One of my favorite months - #December. It is the most nostalgic month for me. It brings to me memories that are indelible and soul-stirring.

Way back in 2016, when I was in #Bengaluru, the Garden City I saw myself as an individual who will be possessing a dual professional degree by 2018. Life wanted to gift me something very different and more challenging. And I am earning a doctorate in TM - Transverse Myelitis.

As someone rightly said

"You cannot say NO to life,

You have to FIGHT back no beat the odds. You got to take your stand because NOTHING is stronger than YOU,

Not a single problem of YOURS"

December 29th, 2016, Thursday I came walking to my friend’s room in Bengaluru from the doctor’s clinic. I went for a follow-up check-up for my neck pain which I was experiencing for 3-4 days and which did not subside.

At about midnight the same day, I could not stand up when I wanted to go to the restroom. Somehow I managed to stroll along and to my surprise, I could feel my bladder full but could not urinate. My friend and I felt it was after effect of some medication for neck pain and an IV drip could make me good. Being late at night we were reluctant to go to the hospital as we thought they might admit me!

December 30, 2016 “a day that will live in infamy,” has taken on an additional meaning for me and my family as it marks the onset of my transverse myelitis. That day morning we called for the ambulance and went to the hospital as I could not walk properly, and we went to #Manipalhospital being the nearest multi-specialty hospital nearby.

Upon reaching the emergency, they asked us to take an x-ray and a couple of other tests. Catheterization was done to get away with my full bladder. The tests did not diagnose anything significant. The then duty doctor recommended for a spine MRI. After analyzing my reports I was diagnosed with #TransverseMyelitis. I did not know what the doctors were talking about. My friend and I were confused. I was frightened about what had happened and I had absolutely no information to be able to educate myself about this disorder.

Soon my breathing got effected and my hand movements started getting limited. I was rushed to the Intensive Care Unit (ICU). The name of ‘ICU’ chilled me out. They took permission from my cousin to put me on a ventilator if required!.

Inside the ICU I was made to wear an oxygen mask to help me be stable.

When I received the diagnosis, I was hearing the words transverse myelitis for the first time in my life. I knew no one who had this disorder, I had no idea what my future held for me.

Could I die from this disease?

Would I be able to recover?

What did my future hold for me?

I received no answers from my doctors.

Transverse myelitis is an inflammation of the spinal cord, a major part of the central nervous system. The spinal cord carries nerve signals to and from the brain through nerves that extend from each side of the spinal cord and connect to nerves elsewhere in the body. It is an autoimmune disease. There is no cure for transverse myelitis. Not boring my readers with more explanation. If interested please click here

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Transverse-Myelitis-Fact-Sheet

I was put on a course of intravenous steroids which lasted for about five days. This could not bring much change in my condition. I had no movement below my neck. With a breathing problem, I could not speak properly and on a feeding tube. Later I was advised to undergo Plasmapheresis – a blood purification process used to treat a number of autoimmune diseases in which the immune system, which is designed to fight off diseases, begins to attack the body. The attacking weapon is the antibodies, therefore in this plasma exchange process, the antibodies are removed (thereby ceasing the attack) and replaced with new. This process is quite intriguing and the clinical definitions that you can find online will provide a much more in-depth definition.

Meantime all my family, near and dear ones were very much worried. It seems I had only about 5% chance to be back in life and a day delay to get medical help would have lead to coma stage or memory loss. I am lucky here.

The financial aspect was getting heavier and I did not have a medical too. God’s grace we were blessed with a few kind-hearted people who helped us selflessly and helped us swim the ocean.

My latest craze before getting admitted was #GreysAnatomy helped me to enjoy my one month stay in the ICU. ICU life was really cool. I made new friends. The nurses, staff, and doctors were efficient and friendly. For a single moment, I never felt like inside four walls for a month without even seeing the sky. My bystanders were allowed to visit me twice a day for just 10 minutes. I realized how precious time is.

After getting stable I was shifted to the general ward for observation and the only treatment to bring recovery is physiotherapy. Doctors just said the recovery will be slow. (Frankly, then I never expected it to be so slow)

I could not even move my fingers. I was discharged from hospital and we proceeded to our native, Kerala. After getting physiotherapy until the month of May from there we decided to go back to Vadodara for various family and personal reasons. Then I could do minimal work and movement with my hands and I was on foley.

After reaching my home sweet home we started physiotherapy again religiously. I am improving slowly and steadily. Every month I can sense a minute improvement and that keeps me going.

Currently, I cannot walk unaided; I need a wheelchair when I go out. And everything I do takes much longer than it did before. But, with patience, I’m taking each day as it comes.

Now I have the power to say:

"This is not how my story will end"

stronger and with more determination this year also.

Last year I got the assistance and treatment from #asianphysiotherapy, Surat. Thanks to the whole team.

I feel happier now that I’m home and with my family and son, even if I can’t physically do as much as I’d like to for them. At least I can speak to them, read to them, and cuddle them. Transverse myelitis is now a part of my life and always will be, even if I do improve.

Admittedly I wanted to just lay back and let it beat me because let’s face it, I have no control over it and it has already done massive damage to my body but I had one thing going for me, one thing left in my life that Myelitis can never take from me and that is love. The love that not only I have for my family and the love they have for me. This hit me like a sledgehammer one day and I decided that I have to fight, I have to try to recover as much as I can, I have to do anything and everything to keep going! Even if I never recover properly, I will make sure I get out of my bed in the morning, I will make sure I keep trying, I will make sure that I will keep doing my physio and just keep going.

I still have days when it feels like TM has stolen everything from me, has taken away everything I enjoyed doing, has taken away my normal life and left me with a body that has been damaged, and given me depression, anxiety and a fear of life itself but I have to force myself to get past these issues, otherwise, I find I’m just existing instead of living. I don’t want to just exist and survive, I want to make the most of my life, even if it is restricted, I still have to give my best.

I have a few people in my life that I love more than anything and without them, I would be lost. The love I have for them and the love that they have for me and show me daily is what motivates me and keeps me level-headed and on the right track. I can honestly say that I wouldn’t be here right now if I didn’t have them and their love. Family and support of near and dear ones are very much essential and I am grateful to have blessed with that.

You can’t be in a fight without getting hit, without being hurt and sometimes even getting knocked down but the question is whether we can get back up again and take the hits and keep moving and keep fighting. Just remember that every breath we take is a smack in the face to whatever our problems are, by just waking up in the morning and breathing we are showing it and everyone else that we’re not done!

Sure there are going to be days when we’ve had enough, we’re at our limits and we feel completely and utterly broken but we do not take that breath and remind ourselves that it hasn’t won. This applies to a lot of people, not just someone with TM whatever our problems, issues or hardships are, we have to keep battling through. Never quit, never give up!

I used to fight and spar because I enjoyed it and it kept me fit and healthy, now I’m fighting for love

This journey has taught me so many things that I embrace. I learned to be happy, be positive, be strong, smile at difficulties, understood the value and worth of family, knew how genuine my near and dear ones are, I realised what true love, care, kindness is, I understood it was wrong underestimating few, how irresponsible, careless and impatient I was, I knew all those who shower love with words need not be genuine, how foolish to trust people blindly just because they showed some artificial love which I mistook as pure love, how rude some people behaved when they know we were helpless, how easily they escaped from their basic responsibilities, how they took this opportunity to hurt and pinpoint things, who act like saints to outsiders and demons to own family. Everything became crystal clear giving me a clear picture of who is who so that I could take life ahead better.

I kept myself engaged in whatever ways I could. Learned to draw, the paint took up tuitions for students from class 6th to the CS. I even went to the extent of taking tuitions for subjects that I never had studied in my academic curriculum. I took advantage of my professional qualification and got employed, stared YouTube classes and much more.

To conclude my survival secrets:

1. My mental strength: the strongest are those who win the battles we know nothing about.
2. Support of family: It gives us wings, strength, confidence, and it's like our backbone. It is easier to win a losing battle with support. And by the word family, I d not just mean all genetically related or spouse. I mean when everything goes to hell, the people who stand by you without flinching - they are your family. Also, the support means in all ways - mentally, emotionally and financially.
3. My education (including my Professional Degree) - Education is the most powerful weapon which we can use to change the world. It helps us make our wings stronger. Education breeds confidence, confidence breeds hope and hope breeds peace. The education I possess helps me to support my family and partially take care of my treatment expenses by earning as much as I can.

I thank and appreciate all who did not give up on me and who are there with me from then till now. I am blessed with people who are too beautiful to let me feeling down. Who pray throughout so that I will soon feel better again. While I rest and recover, they are next to me praying and hoping for a smooth and quick recovery. The BEAUTY of a good relationship is that it can make any sickness disappear.

My dear ones, life is short and unpredictable. Don’t waste a minute on things, places, and people who don’t make us happy. Love unconditionally, forgive your loved ones, apologize and never lose any genuine relationship. We never know what will happen tomorrow.

No one knows what life will throw at us. We should never take anything for granted. Life is too short. What happened to me is rare but accidents can happen at any time. Enjoy life and live life to the fullest. Help people in need, because you never know if you’re going to be the one needing help.