Exciting … without a doubt. Tomorrow I have ‘the’ conversation with the insurance doctor of the Dutch department of disability, in the US known as Social Security. It is ‘the’ hearing to determine whether I’m still fit to perform my job. By having this appointment, in the Netherlands it comes down to that I am on illness leave for nearly two years now, which is the limit. It also means that several official steps and conversations have taken place the past years with my manager, company doctor, labor experts and so on. Tomorrow is the day, so I decide to prepare myself and review my medical file with reports and letters from the neurologist and experts. The words of those files are intense, even surreal that this is about me, but unfortunately it is the truth. The whole MS story and the rollercoaster ride it has been so far… It really is about me.
The report of the labor expert is confronting
The company I work for is obliged to follow some legal guidelines so they hired a labor expert for some research, this was five months ago. A detailed report was created and I decided to read the copy that was provided to me at ease. It’s about my medical and physical limitations, but also includes a company description and a job description, which I practiced full time. Actually, I’m proud to read the story the expert has made of it. Yes, that was the company I was so proud to work for. In easy terms he tried to describe my role, tasks and responsibilities. While reading his words, I almost feel tempted to go back to work again, simply because I liked my work so much. I also notice the urge to correct him in his report, because some details are not fully on spot and some organizational details were slightly more complicated and also the description of my position and some complex facets and responsibilities are unfortunately unmentioned. It is because of my passion and pride that I feel slightly irritated, but I know very well why that additional information is missing from his report. My physical functioning is very dependent on my monthly medication cycle, but also external factors such as temperature, incentives, the amount of rest and so on are relevant. In other words, my life with MS nowadays means that every little thing that is happening in a day has its effect on my body, both beneficial and detrimental. Right now I can uderstand the details in the report because I recently had my medical drip last week. But I know that at the time of the interview for this report, I was a total mess. Besides my walking difficulties that day I was also suffering serious cognition problems and even had speaking problems. It was hard for me to find the words, articulate and I was very confused. When I was asked for which department I worked for and how my work was like, I could not answer these simple questions. It was too difficult. Only after this labor expert had read the statement to me which was provided by my manager, only then some details started coming back to me so I could fill him in. With stuttering and stammering, I explained that I was an IT expert and what that meant in general, but what it really was like and all the facets I performed and that I was so proud of, it simply was too hard for me to describe. Inside my head everything seemed so logic, but I was unable to find the right words. Just impossible.
It is what it is
Today, 5 months later, and with more favorable circumstances, I read the report and it hurts me that I was unable to properly express myself. Not that it matters, because the current description in the report will do just fine for the evaluation by the insurance doctor. But to me, the missing information is a confirmation how grim my current situation is. I only have a few really good days per month. My biggest problem why I cannot function without daily assistance is the serious lack of energy but what I consider to be even worse is the damage the MS has inflicted to my brains, especially when it comes to cognition. The file with reports lying in front of me is definitely confronting, but hey, it is what it is. Tomorrow is a big day. My Social Security hearing is tomorrow and I will just let it go and see how it goes.
“Sometimes your heart needs more time to accept what your mind already knows.”