Guided by joy to live and work with hearing loss

Preamble

Challenges of findings ways to work with hearing loss have been noted by others. Some of those include self-accommodation [1], persistence [1], and unfortunately early withdrawal from social situations and work [2]. At the beginning of dealing with hearing loss this narrative underscored the importance of complex collaborations that crossed system, organizational and people to find ways for Jana to remain functional and perform her work with hearing loss. In addition, the work itself was fulfilling in that there were many accomplishments that she contributed to as part of the team. The focus in the workplace (health and rehabilitation services context) was on finding possibilities for Jana to participate with her hearing loss that included the sharing and shifting of roles – that of team members engaging in group meetings and delivering client updates as well as a director that supported and believed in Jana’s full potential. This narrative involved transitions across the adult life course that moved beyond Jana’s staying at work through living with hearing loss in her desired profession. For Jana the need for deeper contemplation and adjustment at the individual level became apparent when faced with the realities of changing hearing capacities, workplace challenges, and a reexamination of capacities within the fuller context of family and social life. Jana was faced with others who perceived that a change in her role of occupational therapist to researcher may be an option for continued work when the challenges of her hearing loss did not align with demands of her work. The need to lessen the impact of her hearing loss on her performance triggered the beginning of another transition to other work. Some of the challenges of fatigue were associated with the fast pace of attending, monitoring, and comprehending the communication demands as a therapist in the rehabilitation setting. Deep self-reflection and mindfulness of her current belief in her own capacities and the not so wanted suggestions to change her type of work ensued. She was able to consider her options that of a research assistant role. Once in the role she found that patience, understanding, support and time to grow into the new role helped her overcome challenges. While she enhanced her ability to perform the research role it lacked something she valued as a professional and that was her potential for a sense of joy inworking.

Going through the processes of transitions other people often give advice on a range of things to support difficult and unanticipated career changes. Jana was encouraged to try yoga for wellness. Experiences with yoga began and with it an occupation that Jana found a sense of joy. She wanted to do more, and at first may not have had the confidence in her capacity or capabilities to take the training and achieve success in becoming a yoga instructor. This narrative suggests there are many turning points, considerations, and contemplation of opportunities along the way. Opportunities may or may not seem to fit at first with understood capacities. The narrative emphasizes that a focus on the joy in doing something and valuing your contributions are part the journey in finding success through ongoing work transitions. Read her story to appreciate the experience.

Lynn Shaw

Column Editor

Work Transition Narratives

1.My story begins

When I was in high school I had a lot of interests. It was difficult for me to make a study choice, I loved being surrounded with children, but also interested in some medical directions or even something creative. In looking into careers, I felt that with studying occupational therapy I would be able to unite all these directions.

2.My hearing issues begin

I loved my chosen area of study and could not wait to get started as an occupational therapist (OT). However, during my last year of college, I discovered my hearing disability. I began to have trouble understanding the teacher when seated in the back of a lecture hall and was surprised that this was not an issue for my fellow students. Another thing was related to phones. Mobile phones became popular at that time, and often I didn’t hear the ringtones on other phones. After visiting the doctor and audiologist I got my first hearing aids. Well, problem solved I thought, and went on with my life.

3.My joys of work

I graduated with a bachelor degree and was eager to get started to work. First, I worked as Occupational Therapist (OT) in a private OT practice for children. Then I took a job at the Radboud University Medical Centre in Nijmegen, where I did my internship and after that a holiday replacement. I loved this dynamic and challenging workplace and really enjoyed working there, in a team full of passionate people with a heart for their profession. There were always new ideas and challenges, such as participating in studies, developing interventions, and writing practice guidelines. I participated in a big randomized controlled trial on community based occupational therapy for elderly with dementia and their care givers (COTID), which was found clinically effective and cost-effective as well. After that, the team of researchers and clinicians further developed this intervention and training for occupational therapists, did an implementation study and wrote a book.

4.Grappling to hear and communicate in social and workspaces

Outside of work I was very active socially with my boyfriend, family and friends, sport, and hobby’s. During this part of my adult life working and engaging in a fulsome life outside of work I had to learn how to deal with my progressive hearing loss. For instance, social situations became more and more challenging and were most of the time exhausting. Hearing speakers talk quickly and often together. They skip from one subject to another one and a half word is enough for them. Not for me! Some words are very similar in terms of sound, so I need the rest of the sentence to make clear which word it is. Often, I’m still puzzling, clarifying what is being discussed while the others are already reacting or bursting out laughing. This can be frustrating and takes a lot of energy. I must concentrate on hearing all the time, which makes social interaction a strenuous affair instead of a relaxing one. Other people do not have to make these efforts, they just hear. It was sometimes hard, seeing everyone talking, laughing, enjoying the music, totally relaxed, having good times without even a single trace of effort or fatigue. And it is difficult to explain. Also, wearing hearing aids does not mean you understand every word, certainly not in noisy situations or in groups, because not only speech but all sounds; all environmental noise, is amplified.

Communicating in a group became increasingly difficult, which meant that I was unable to perform some tasks at work properly, such as multidisciplinary consultations or meetings, teaching large groups and so on. More than once I gave incorrect answers because I did not understand the question correctly. And during group interaction I often got completely lost. The high pace of communication within large multidisciplinary meetings, with ever changing people who quickly had their say, was not longer feasible for me. I often did not dare to ask when I didn’t understand something. I was embarrassed and afraid to interrupt or delay the meeting. That made me miss information and I noticed that I started to become less certain and overtired. The lack of confidence and fatigue lead to reduction of work satisfaction, avoiding busy social situations and I withdrew from most of my hobby’s because I no longer had the energy.

5.Trying new ways to work

At work I was able to manage the fatigue and the uncertainty through a variety of means. For instance, I set priorities and saved energy to keep functioning at my work and that went well for a time. I also benefited from some adaptations and support of my colleagues, such as delegating and dividing tasks. When teaching our intervention, my colleague did the plenary parts and I did only the parts in small groups, and I no longer participated in multidisciplinary meetings. Colleagues submitted my information during the meetings and brought back the information I needed about my patients.

Additionally, I had the benefit that the head of my department thought in terms of possibilities. For instance, she facilitated the adaptations mentioned above even if it was not always cost effective. My supervisor and colleagues gave me the feeling that I was doing a good job. And this again motivated me to go on. My partner supported at home. He participated in household activities and understood when I wanted to stay at home because of fatigue instead of going out. And so it worked out for quite a while to keep my life running.

6.Managing work, family and disability

The next phase of my life a long-held wish came true, I became a mother. My partner and I were lucky to have three beautiful children. For every parent with young children it is a challenge to combine childcare and working, especially for someone who has a disability or disease. I tried so hard, to be both a good mother and a good employee as well. During this time, I unfortunately neglected my self-care and ignored all body signals such as extreme fatigue, lack of concentration and sports injuries that didn’t get better. I got agitated quickly and was not able to find enjoyment anymore. The result was I was completely exhausted and was not able to perform my work successfully and manage my family life. I could not go on anymore. I was burned out and stayed at home for 3 months and then restarted work a few hours per week.

7.Changing workplace expectations

Matters at work also changed. For me, the situation of working, raising a family and managing a hearing disability were challenging. The demands at work increased and the head of my department moved on to another job. Both the interim manager and business manager no longer saw the possibilities, but rather the limitations. I could no longer meet the production requirements and the continuation of my job was uncertain. Also, the company physician seemed to have more faith in the search of another job than opportunities to keep the one I had as an occupational therapist. I felt defeated.

The good news is that at the same time as work became unmanageable, I had access to resources to support looking into other work. I was working on a ‘career path’ with a career psychologist. She helped me to reconnect body and mind, discover my strengths again and made sure I did not give up. She was the one who urged me to do yoga. Also, there was a new head of the department, who wanted the best for me (she was one of my dear colleagues who had known me for years). Together we searched for another job with content that I could perform, and I became a research assistant.

8.New directions

At the beginning I really missed working as an OT and did not feel as capable as I would have liked in my new role. I struggled with epidemiology and statistics, all those different research methods, and methods of data analysis. I was not used to staring at a computer all day and felt much less meaningful than when I was working as OT. My director gave me time to get used to different duties and to develop confidence and then grow in this position. She was looking for projects in which I could do manageable bits, collaborating with experienced researchers. I took several courses to gain more knowledge and skills and gradually my insight grew, and I learned that my work also made sense.

Beside this, my director gave me the support to do the yoga teacher training. Because after that yoga class I mentioned above, that thought “why I don’t do this every day” came back more than once. I suppressed the wish to do this for a while, afraid as I was it would be impossible to do this training because of my hearing loss and limited energy. But the desire, and will, became so strong, I could not ignore it any longer and I decided to give it a try. At first, I did a short training in child yoga, to see if it had a chance of success. The training was with a small group and I used additional hearing aids. It worked out well and confirmed my feeling that I should follow this path. Teaching children yoga brought me a lot of joy; the interaction with the children, the creative process of preparing the lessons, being physically active. Even though it is completely different as my work as research assistant, which is primarily a mental activity, it fits nicely, it’s really a good addition.

9.Building on new directions

I decided to continue and visited the information day and registered for the 4 years teacher training courses (RYT-500). I wanted to see and feel which would suit me best and would be feasible. Unfortunately, we started in a large group of 17 people and despite my additional hearing aids, the plenary parts with a lot of group interaction were difficult for me. Fortunately, my fellow students and teachers were all very understanding and helpful. I never had the feeling that I was a burden to anyone, not at all. I learned that we all have our strengths and weaknesses and that this is fine, we are all good as we are. I no longer hid or fought against my weaknesses but learned to be compassionate, accept and take good care of my body. To make sure I could keep up the whole process I turned in hours at work and had the possibility to work from home one day a week. And of course, I could not have done it without support from my partner, parents and all the people who believed in me. I did the training, including the specialization in pregnancy yoga, in 5 years. During these years I already started teaching to put what I learned into practice immediately. These were challenging and intensive years, but so worth it!

Step by step, with trial and error, things went in the right direction. Nowadays I am still working asresearch assistant in the Radboud University Medical Centre, and the proud owner of a small yoga school. And I am more balanced than I ever was.

Reflective questions