Aphasia as an invisible companion in education and career

Communication and language have always been an important part of her career plan. She aspires to have a career in creative writing. After getting diagnosed with aphasia, Leonie Höpfner’s life is suddenly turned upside down. But she is sticking to her plan: after completing an internship, she is now working in the editorial department of REHACARE.com, while also pursuing a master’s degree at the same time. Here is an insight into the life of our editorial journalist.

Going to college isn’t always easy and a major challenge for me. Lectures are especially horrifying: understanding the instructor’s thoughts, expressing my own thoughts and simultaneously writing down everything that’s important – well, that’s not really my strong suit. My brain no longer processes things quickly and after a few hours, I am no longer able to concentrate. I need more time than others, but many people around me don’t understand that. I can’t go any faster! I need peace and time to do a good job. Recently I had an oral exam – my personal nightmare. My brain had turned to mush and I worried that I wasn’t able to form a cohesive sentence – but somehow I managed to make it through. Actually, I did quite well.

I have aphasia. That means I have an acquired oral motor speech disorder – caused by a fall. And I also live with an autoimmune disease.

I have a bachelor’s degree in media and communications. Communication is the most important component in this case. But then three years ago, I wasn’t able to talk or write. Even when I was a little girl, I always wanted to become an actor, then a journalist and at 20, I wanted to go into public relations. All of these are careers that involve communication and words. It almost seems ironic to me today.

There are times when I wonder what made me go for my master’s degree on top of it all. Why didn’t I just apply for a job? But then I would have had to say goodbye to my dream job – and I didn’t and I don’t want to do that. I am also pretty sure that it would not be so easy to land a job since I lay my cards on the table and am honest about my situation. That means I always have to overcome obstacles – in my studies, my job or life in general.

It took me a long time to accept that I am no longer able to do what I used to be able to do in the past. At first I thought that things would gradually come back to me over time – but unfortunately, that’s not the case. Yet I didn’t want to accept it, it was too painful. I am only just now open to dealing with it because it is a part of me.

When I meet new people and tell them that I have an acquired motor speech disorder, they often say, "That’s nonsense. You are joking! You can talk. I can’t hear a difference." That’s when I have to explain that there are far more aspects to speech than just talking. Yes, I don’t have great difficulties talking. However, I apply for disability accommodations to do written exams at the university and homework for example. I get more time to complete these tasks. That is extra time I need to clear my mind and notice mistakes I made – something I still find very difficult to do. I take forever to understand a scientific text in English, and when I am agitated, I can’t get the words out – a classic characteristic of aphasia.

Somehow, I haven’t had much luck or struggle with "The Fault in Our Stars"– as the movie title (and Shakespeare) so aptly describes. I got lupus, an autoimmune disorder, and aphasia at the same time and all at once. Both lupus and aphasia will continue to be my companions. But they are impairments nobody is able to see – invisible disabilities.

Yet they impact – and sometimes limit – me and my life. I live like everybody else but I have to be more careful. I take my medications every day and do speech therapy twice a week. And stress makes me really ill. Needless to say, I am not always sitting around thinking about the many disadvantages I experience but when things flare up and resurface, it can bring me down.

I have always been ambitious and I have very high expectations of myself. Unfortunately, it’s not quite so easy to scale them down because my ambition has also driven and motivated me. For instance, I have wanted to write a blog about aphasia for a long time but simply didn’t muster the courage to do it. In a way, my blog is self-therapy that inspires me to write again. At some point, I found the courage and published my texts on the blog, despite all of the mistakes in them. I was quite proud of myself. At the same time, I had the chance to do an online editorial internship. I took this as a chance for me to see how much I can do already and what I still need to work on. The fact that I was able to continue to work there after completing my internship while I am also going to college at the same time, has given me added confidence in my abilities. And I know that I need to be flexible and adapt my standards and accept myself just as I am – not perfect but who wants that anyway?

In any case, my family and friends accept and take me as I am and have always supported me. They have really helped in getting me where I am today. They encourage me when my speech doesn’t flow as well as I would like and then they raise me up. They reassure me and urge me to keep going and they slow me down when I want to do too much.

The fact that my commitment pays off was evident during the oral exam I mentioned earlier. When I got my grade from my professor, she added, "Ms. Höpfner, it’s important for me to tell you that you got this grade because of your knowledge and not because of your disability." Although grades are important in studies, recognizing my achievements this way means even more to me.