On Monday the 3 rd of March, I started to getting ready around midday. The appointment was at 4:10 pm. I admit I was very nervous about the interview. So I needed lots of rest during getting ready. Because of the nervousness, I couldn’t really tell if I was well enough to get the interview done or not. I wasn’t really well as I really struggled to get out from bed. But I guess the adrenaline was pumping to get me moving. When it is pumping, it would not stop until it all pumped up.
I left home early enough to allow me getting lost on the way. Even with the kind direction of the Centrelink officer, I struggled to find the office. There was plenty of parking space and place wasn’t busy. Disability Parking Space was at the side of the building. And there was long sloped path towards the entrance of the building. It took me ages to walk up the slope and I was completely exhausted when I finally reached the front door. I was starting to realise that Disability Parking Space in Australia are designed for people with wheelchair, but not for people who is too weak to walk.
When I got inside, I was overwhelmed and could not move for a while. It was a huge open space office. It was bigger than school gymnasium. There was reception counter around the entrance area. And there was a long queue. There were signs to tell you to go which reception desk. After a little struggle to understand their system, I realised I had to join the end of the long queue with other people. After the walk from my car to here, I knew I would not survive in this queue. So I had to walk straight (but slowly) to the reception desk and talk to the person at the side who was sorting out mails. I felt that people in the queue gave me sharp hateful eye beams, but I needed to survive the ordeal of the day.
I interrupted the busy woman and explained I could not stand for long and I was here for the interview. She pointed a corner of the office and told me to wait there. When I looked at the waiting section, I gasped. It was another long walk to other side of the huge building.
I liked the open air atmosphere. I had prepared my mind for the disaster for the day. BUT… There was no hand rail or wall for me to hang on, lean on or direct where I was going (I keep my head down to preserve energy when I walk). There was no chair to rest in between. Some visitors who were using computers provided along the wall watched me with amusement. An old gentleman who was sitting at the waiting section kept watching me walking. He was not sure what was wrong with me. I finally got to the waiting section. As soon as I sat on the chair, I felt the sensation of black out coming. I occupied on two chairs and let my upper body lie on them.
Two mothers who were waiting stopped chatting for a moment. But the chat started as if they didn’t see anything. One of their children looked at my face from distance. I gave her a weak smile. She was happy with it and walked away to play area. She occasionally came back and satisfied to see I wasn’t dead yet. I waited my breathing to go back to normal. I should have enough time to be okay before the interview.
After a while, an officer came to collect the next interviewee. It wasn’t me, so I didn’t move. Two mothers were telling her that I was sleeping and I could be the person. So I told them that I wasn’t sleeping and I wasn’t the person. Obviously, someone didn’t show up for her appointment.
The officer saw me and asked if I was okay. I knew I would be okay if I kept resting. So I explained to her that I would be okay and I am always like this. She decided to give me the interview straight away even it was early for my time.
She pointed out where we were going, and I felt blood in my face got cold. The half end of the huge building had area of desks. Apparently, her desk is somewhere in the ocean of desks, which is much further than the distance I just walked. She was very apologetic and offered me to lean on her. But she is a petit woman and I would squash her if I did. (I’m not fat, but average Australian size.) I asked her to carry my bag instead and explained that I walk very slowly. I gripped firmly on my walking stick and looked at the distance in despair. I just wanted to cry.
So the journey began. It was an awkward walk. She had to realise my slow is much slower than her slow. She was half apologetic and half cheering me by pointing at the direction we were going. I desperately wished I had a wheelchair. We finally reached the first set of desk area. She looked at my hand grabbed the chair hoping to sit down. She excused that her desk was still further down. When we finally reached at her desk, she pulled the chair for me and told me to sit back and relax. I knew if I sit back to the upright back of the chair, I would pass out. I needed to lean forward. I asked her permission to put my head on her desk. I couldn’t talk for a while. And I regret I didn’t bring the bottle of water because it would be too heavy for me to carry.
When she sat at her chair, she told me that we had talked on the phone about a week ago. That moment, my face lit up with big smile and said, “Thank God, it’s my lucky day!” My heavy face was still on her desk and I didn’t have any strength to lift up anymore. But I could tell she was happy to hear I remembered her name and I was glad to meet her.
She apologised again for making me come to the interview. Well, she is not the one who made the rule. And I should try to cooperate to keep receiving the DSP.
She printed out a form and asked me to correct them if the information was wrong. It was the same form I received last year and posted it back by mail. I didn’t know the reason why this year was different.
I could say that Centrelink is going through massive IT integration and it caused messing up their data base. (Well, it is my guess and I can be easily wrong.) And if you know anybody who had dealt with Centrelink, they would tell you that the staff cannot do a simple job that school children could do without any error. (I’m sorry Centrelink, but I didn’t make up the reputation.)
Some of the pre-existing personal information were changed or disappeared without my knowledge. Some of the information that I had to submit the form twice was still missing. The kind officer did a little dig for me and found a hidden info at back of the data base. Then I was disgusted even further as the information was not correctly entered. If, in the future, I need to contact them regarding to the information, they would simply refuse to talk to me because I don’t know that they created a completely new information about me without my knowledge.
The kind officer couldn’t adjust the info as the system refused her access. So she added the correct information as a note. She had to adjust my bank account number as they had created an imaginary one. She happily adjusted small things I had been asking and noting on their forms but never been updated. Although I brought all documents requested, she didn’t even check any of it. She brought a little respect back to my own detail on their data base.
While she was doing all this, she was also talking to a client on the phone trying to help him out. The other officers at the desk weren’t interviewing anybody, but just let her answer the phone. I didn’t mind her helping him as I could tell she was genuinely trying to help people, which is very rare for Centrelink officer. And I know how relieved he was to be able to talk to someone who makes sense. She kept explaining him that she was in middle of the interview, therefore, she would phone him back. But he seemed to be desperately trying to find out the answer.
Once she updated all my personal information, we had a little chat. Their computer screen must displays that I was a victim of Domestic Violence and suffer of ME/CFS. The way she talk was quite compassionate and demonstrated that she had little more knowledge about ME/CFS than average people.
She asked how I felt about the label “all in mind”. I explained ME/CFS is a biological illness, not psychological. People get depression as a secondary condition but the situation is as same as other chronically ill people. Anybody who has to live with severe symptoms and limitations, it is rather abnormal if we don’t get depressed.
She asked about prognosis. All I could say was “I really hope…”. I also explained how little chance for a severe MEite to regain health. I added that there are no practical treatments due to lack of biological research. I am a rare and very lucky MEite who has a compassionate and caring doctor who tries to make my life less difficult. She even seemed to know the sad reality that not many doctor is willing to treat us.
She suggested taking vitamins. So I reminded her that what I am dealing with is an illness. Vitamins keep healthy people healthy, but do not cure an illness.
She assured that Centrelink is there to help me. So I can feel free to ask to their support. She even went further and assured me they would even help when I am ready to go back to work. As soon as she said that, she may have realised how pathetic the idea was. But I knew she is a kind of person who works for Centrelink because she wants to help people. So I just smiled and said, “I really hope I could get back to accounting work one day.”
That seemed to be the end of the interview. So I sincerely thanked her for her compassion and support. Her attitude did made things much easier for me. I still didn’t know why I had to come to the office, but she probably doesn’t know, either.
The interview wasn’t really the end for me. When I got up from the chair and look at the distance I had to walk back, my heart became heavy again. I started with a little step. Before I reached a half way mark, I was already struggling. But it was just huge open space, no chair or nothing for me to rest. I was dreaming for a wheelchair. Slowly and slowly, I reached the entrance area. Slowly and slowly, I get to the path to Disable Parking Space. I hang on to the hand rail and needed to catch my breath for a while.
Finally, I got to my car, and by then, I was in crisis. I managed to open the door. I fell on the driver’s seat and struggled to bring my legs inside. I pushed the seat all the way down and relieved that I survived. I was satisfied that I didn’t collapse in front of strangers. I had to use asthma reliever before I got into further trouble. My arms were too weak, so I couldn’t shake it. I didn’t have spacer, but I managed to squeeze several puffs. And that was the last thing I could do.
I was relieved that this ordeal was over. I had one more appointment to go. After that, there shouldn’t be anymore outing for a while.
I waited for about 40 minutes until I felt safe enough to drive again. People walked by my car, but nobody bothered to check if I was okay. From my experience, Centrelink is not for ill people… But I cannot survive without the DSP. And meeting the officer who genuinely wants to help people was really refreshing experience.