95. Story of my ALS Journey

Although, I could still walk at that time but there was always uneasiness on both of my legs while walking.

Both my strength and my balance diminshes over time. 

I had problem  to stabilise myself while walking nor standing.

I had to lean on something. Like in this photo, i had to lean on my car in order to stand.

After the diagnosis, I could still drive but with my right hand manuevered the car steering while using my left hand to lift the leg from the accelerator to the brake as my thigh lost  its muscle to control the movement of the legs leaving the leg inactive to respond. 

Even in that situation, I prefered to drive my own car instead of taking public transport. It was much convenient to drive.

I was still driving until it hit me badly in late 2010. I could no longer lift my legs with my hand anymore as both my hands had weaken reaching to a point where controlling the steering with my hand had became an herculean task. 

At the same time, I was forced to use a walking stick and crutches to walk. After awhile, on top of using  crutches to walk, I needed others to help me by holding on to their arms or shoulders while walking.

In  2012,  the crutches did not do much help to me after a series of unfortunate event  of  tripping and falling  both in my personal sphere and in the public  spaces that put me into humiliation.,

After much thought of my safety, I had officially became a powered-wheelchair user and then manual wheelchair until now.

 The dramatic shift was mainly caused by Amyotrophic Lateral Sclerosis or Motor Neuron Disease as to some it is known as Lou Gehrig's Disease.

94. Visiting Orphanage Home

One day during the fasting month in 2009, I did not  know what to do during my off day on that mid-week. 

Mid morning,  I decided to go to my friend's house in Cheras to hang out with him as it was his off day too. 

I was reading the newspaper and my friend was watching tv when his housemate came home that afternoon. 

We greeted each other and I asked my friend's housemate how was his puasa. 

He told me his puasa was ok and he's back from visiting  an orphanage home nearby their area. 

I asked him what did he do  there when he visited the children?

He said he talked to them and gave moral support to the children. 

I was interested to know more and asked if I could join him the next time he's going there. 

He said he's going there again in the afternoon to buy groceries for orphanage home. 

The three of us went to the hyper-market and shared money and we bought groceries for the orphanage home. 

So after we went for shopping,  I drove my car to the orphanage home.  I really wanted to meet the children.

Unfortunately, the children were not at home.  We sent the groceries and went home.  I was a bit frustrated I did not get the chance to meet them. 

 When I was a child,  I was almost being sent away to the orphanage home if it was not because of my grandmother and my grandfather who took us in their care. 

I know a few of my family members and relatives adopted children to be part of their family members.  Some of the adoptions became family secret until years later that then I found out.  Actually I was told about it in recent years. 

My grandmother's younger sister at some point even built an orphanage home and took care of the orphans. I am not sure if the home still exist.

93. Akie

It was Friday afternoon in 2006 or was it 2007? I remember not the exact year.  There were several people  scattered in the hall but some were strategically located on every corner of the hall.  

The hall was quiet, a pair or two of the people in the suit whispered to each other while the rest just stood at specific places observing  the hall.  

We were all waiting for the Malaysian VIP to arrive.  We were informed that the VIP was going to be late due to Friday afternoon rush hour. 

I was observing the people in the hall apart from those in the suits. 

She was looking at some paintings and some posters hanging on the wall. 

When she saw me,. she smiled at me and I smiled back at her.  

Then, she walked towards me.

I introduced myself to her and I addressed her with formality. 

"Just call me Aki',  she said casually. We had a good chat. .  She was very friendly.  She was also candid, talking about her life,  how she missed her life during her younger days. 

Among the things we talked were about her younger days on how she liked and enjoyed the night scenes at the clubs.  She even became a DJ for night clubs in Tokyo at one point in her life.

We had a nice time chatting and laughing.  I was comfortable talking to her,  felt like i have known her before. 

We chatted for about 15 mins before the guy in the grey suit who was talking to his ear piece,  approached her and said something to her in Japanese.

She waved at me and told me it was nice talking to me before she was ushered away. 

Then, came a Japanese lady in a suit  approached me and telling me in a fluent American English that I failed to follow the protocol. 

Aki Abe came and talked to me.  What was I supposed to do?  Walked away?  Ignored and snubbed her? 

Whatever it was,  I had a nice time talking to her.