Dealing with the Rarest of Rare

So here I was on the 5th the day of my ICU stay, waiting for some news on the numbers of tests being run on me. I was admitted as I had lost one eye and was paralyzed from the waist down and bowel. The head of the neurology department was repetitively asking the staff to do another MRI, just in case they missed something (like a lesion in the brain). He was sure that I had multiple sclerosis (MS), and told my parents the same.

In the meantime, a sample from my spine was sent for further examination. Because of the uncertainty I was shifted to a normal ward.

The rarity of NMOSD

Day 8, I am AQP4 +.

Now the way my family and I were told was, "she got very lucky". We were happy to hear these words as all of us thought that I had been saved from something major. But then he continued, "She is lucky because she has the rarest of rare disease NMOSD." (Neuromyelitis optica spectrum disorder.)

He was kind enough to add that the percentage affected in India is minimal. He said I would die soon (2-3 years max), and to make the most of it and we will see what we can do. He was uncertain of the line of treatment.

Initially, rarest of rare became hell for me. There wasn’t enough information. The constant fear of death, the stares, leaks, mocking, depression, dependency, anxiety, and spasms.

Doctors didn't know about my disease

Things changed slightly when I went to the ER for painful spasms and told the doctors what I had. That was the first time I realized what he meant that I had this “rarest of rare” disease. The nurses and doctors Googled NMOSD (and I am not talking about just any hospital it one the top in India). I thought it was funny, and that was the day my rare condition became a source of amusement for me.

Staff gathered around me and took information related to NMOSD. "Oh, so it's not MS.” No I answered, it’s a newbie in the market (especially in India). I’d say a distant cousin of MS but doctors tend to confuse it with MS, and this one gets the same royal treatment. Which I was was getting, as doctors had to put me on some medications. But thank god for rituximab.

And this didn’t end with one visit to the ER. Every time it’s the same story, unless my doctor is there. Expressions on their faces while Googling NMOSD are priceless.

I don't "look sick"

I thought if the majority of the doctors were not aware of NMOSD, then why was I being hard on people if they were judging me? It is ignorance. I have a rare chronic illness and I need to accept it with open arms and deal with it.

With the initial phase of paranoia gone, my new family (this Neuromyelitis-Optica.net community) and mountain loads of information, life got simpler, easier, and funnier and I became a rebel.

I used to hate it, when people stared because of my eyes or walk. But now I ask them if they like my funny penguin walk, or how my both eyes are in different directions. See, not everyone has it, so I am special. And I pass them a smile. I don’t "look sick", I don’t carry my disability card.

So I have often been told to look more like an ailing person. To which my response is, if penguins look cute with their walk, why can’t I look cute by dressing up and walking like them. 90 percent of the time people don’t know it is my post paralysis walk and I am so proud of it.

Dealing with judgment and changes

Some are worse around me, especially all the Indian aunties who used to call me cuckoo, tell me I had made up this illness and would give advice. My response to them now is "enlighten me". I listen without the slightest offense. From time to time, I tell them I will try their remedy.

The painful spasms that made me cry are now a scene out of a horror show and make me laugh the way my legs turned (obviously I wouldn't laugh until it was over). Inserting IVs became the game of hide and seek between veins and needles - I would time it. I have been asked not to do crochet because of my partial blindness. I might lose my right eye too. I do it still, partially to annoy them and partially because my daughter will wear her mom's hand-knitted items.

And the hair loss, when I finally took the shaver and went bald. My advice to all the people who called me names: hair is not everything. I looked cute when I was bald, and now look cute with my pixie cut and they are just jealous.

I still have my leaks even with diapers at times. I have seen the most disgusted looks on people around me. I used to cry but now, I have accepted it’s a part of my NMOSD.

Travel and food are another thing. Post-NMOSD diagnosis, my family was scared of me traveling alone and eating whatever I want. Partially to stop spasms and post-cholecystectomy, which is reasonable, but I still do it because I can’t let fear cripple me. Me and my best friend always have a good laugh and tell our family our ghost will haunt you guys if we don’t travel or eat what we love.

A transformation

This rare illness transformed me for good. I couldn’t do it alone, and it hasn’t been an easy journey. From being sensitive and giving, to being empathetic and learning to agree to disagree. From seeing the funny side, to speaking up against medical gaslighting. Letting go of a relationship that told me I was a burden and was ashamed of the way I looked. Finding my solid ground with my daughter, my best friends, this community, and my family.

Not that my depression and anxiety attacks have left me. But this rarest of rare illness has transformed me in an unimaginable way, and I have alternate ways to cope and thrive.