ALS Cinderella

 If a fairy godmother turned up and granted me a wish to be ALS free for a day, how would I feel and what would I do?



For starters, what a joy it would be to wake up from bed whenever I wanted without being manhandled. To put my own two feet on the floor and feel my own weight! Bliss! I would brush my own teeth without getting hurt in the gums and take my own shower in a non hurried way. They say stop and smell the roses, well I would stop and smell the shampoo, lol. What a pleasure to pick and wear my own clothes and look trendy for a change. I would comb my gently without yanking out a few locks.

Now that I am ready and looking top notch its time to head out to eat. Oh how amazing it would be to watch and experience the outside world, I wonder what all has changed. At least I know that my city has a new metro line and a new sea bridge, well I sure would love to experience those. Although I have lost contact with being in the crowd so I would have to brave it out and reach my gastronomic destination.

How lovely it would be to eat with my own hands and use some cutlery and feel fancy. Don't even get me started on what I would eat. Since this is an imaginary situation anyway I am taking the liberty of having unlimited space in my tummy. Maybe I would start with the items that are not feeding friendly like pizza, penne pasta, noodles, subway sandwich, ice-cream. Then there are items that are not home delivery friendly like nachos or some street food items. Then there are items that I avoid for fear of pneumonia  like milkshakes or coke float.

With my stuffed tummy I would head to the beach and feel the sand on my toes and let the waves wash over my feet. Watch the sun go down. Head back home to chat with family with my mouth and not spend time with my own thoughts for a change. Go to bed peaceful, content and happy. Adjust my pillow and blanket to my own liking.

The truth about ALS is that the compromises a patient makes are often overlooked and forgotten. We are just humans craving a normal life.

Comments

Post a Comment

Popular posts from this blog

A Shift in Mindset

 At the time I started falling sick, I was leading a very busy and self dependent lifestyle. Living alone in a foreign, non-English speaking country for many years pushes you out of your comfort zone and you get used to figuring out everything on your own. My typical weekday would start with the German language A2 level revision class from 6 to 8am. Then I would quickly get ready and login for work, checking my mails while eating muesli. I would whip up a quick lunch at noon, logout at 5 or 6pm and then step out for a visit to the supermarket or just a walk if it was not too cold, return home, cook dinner, watch some TV. Finally I would retire to bed after doing the dishes, which was my least favorite task. On weekends I would again attend the German language B1 level class from 8 to 11am, clean the apartment, do the laundry, and maybe treat myself to a good meal at a restaurant. I had to troubleshoot all issues on my own, be it a clogged drain or a fixing the hot water. All while taki
Read more

M.I.A.

Yes i  have been mia. Facebook probably thinks that I am dead. Amazon, Nykaa and Myntra are sending me We miss you emails. But I haven't disappeared from the face of the earth. At least not yet. The fact is at the age of 32, I started showing weird symptoms and was eventually diagnosed with ALS. Let me give you a moment to Google that. Yes it is the Stephen Hawking condition. Yes it is fatal. And no there is no cure yet  Needless to say my life completely changed after the diagnosis and to make matters worse i was progressing rapidly. I had to move back to India. Soon I lost the ability to use my hands and arms. I continued to work using my knuckles to type which by the way is slow and painful. Gradually my legs were affected too. As of today, I can't do much with my hands. They are pretty much lifeless, I can't eat food on my own, can't use the TV remote, or even my phone. It has been so long since I touched my own face or combed my own hair. I can no longer sit up or
Read more

On the rocks

 A few years ago, the Ice Bucket Challenge had become popular. Everyone from film stars to sports legends were posting videos of them getting drenched in icy waters to jump on to the viral trend. But I wonder how many people knew its real purpose. The challenge was meant to create awareness about ALS and to expedite the research for a cure . Like all things viral, the trend has long died. And unfortunately so have many people from this sadistic disease. ALS has been known to mankind now for almost a century, but we are yet to make the breakthrough. All we have is one approved medicine - Riluzole, sold under the name Rilutor in India. The medicine claims to prolong survival by 2 to 3 months. 3 months? Really? Even a season of Indian Idol lasts longer than that. This means I would die before knowing who won the season. LOL. I can't help but wonder what is taking so long. None of the neurologists I met seemed disturbed that they were faced with a problem that they could not solve. The
Read more