Encouraging other people to be completely themselves and to live from the heart means a lot to Julia Wagner. On REHACARE.com, she tells us what has been her biggest challenge so far and how she rolls otherwise.
Name: Julia Wagner Age: 29 City: Berlin, Germany Occupation: deceleration and self-acceptance coach, mentor for a fulfilling life with Multiple Sclerosis Impairment: Multiple Sclerosis
Julia Wagner: When in the evening I realize that I`ve helped someone with my work and the person allows him or herself to just be him or herself. The day is even better when I have taken care of myself and my needs.
Which auxiliary means or daily living aids are indispensable for you?
Julia Wagner: I am very grateful that I have not yet needed any medical aids because of my MS. However, there is one person I definitely don't want to live without: my partner. He is always there for me, supports me wherever he can and gives me a lot of strength. With him by my side, I know that I can do anything.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Julia Wagner: Well, there are quite a few things. But first and foremost, I would like my fellow human beings to no pity people with disabilities or stare at them. They´re supposed to be seen and treated like as normal people. When it comes to people with chronic diseases like MS, whichyou might not be able to see, I would like for people to think before they speak. Sentences like "You don't look sick at all." / "My aunt / cousin / old friend also has this disease and he / she is doing great." / "Have you already tried XY, that should totally help!" might be well-intentioned, but mostly don't help. Simply being there for the person concerned and asking how you may be of help, is always the best thing to do, in my opinion.
Which assistive device would urgently need to be invented and/or improved?
Julia Wagner: It is not a tool per se, but I would like to see more psychological support for people who received a diagnosis that is going to affect their entire life. Shortly after my diagnosis, I felt very alone, and I had to seek help by myself (and sometimes even pay for it). I also waited for a long time before getting a place in therapy. Every person who urgently needs or wants psychological support should receive it easily and without a long wait.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Julia Wagner: My biggest challenge so far has been accepting my MS unconditionally. Because I used to be very perfectionistic, I felt like I was no longer "right" and no longer functioning the way I wanted. I felt abandoned by my body. When I found out this summer that I had to take stronger medication resulting to my desire to have children being pushed back by at least three years, I became even more aware of how much the disease was affecting my life. This allowed me to learn to let go even more, to accept that I cannot control my illness and my life in general and thus to enjoy my life to the fullest. During this phase, spending time with myself to process, journaling, coaching and of course my partner as well as family and friendshelped me the most. I am very grateful to have such wonderful people who are always there for me and support me in my life.
What can the assistive technology industry learn from the Corona pandemic to make life easier and/or better for people with disabilities in the future?
Julia Wagner: During the Corona pandemic, maintaining social contacts was made even more difficult for people with disabilities. Exchanging with others, especially about topics that have nothing to do with the disease, is indispensable. I would find a platform that is accessible to everyone – regardless of disability or limitation – enormously important. In this way, new relationships with people can develop that motivate and give hope not to give up.
If nothing would be impossible: Who would you like to meet one day and why?
Julia Wagner: In my opinion, less bureaucracy and more goodwill would make the lives of many people with disabilities easier. And here too, I think that increased psychological support/mental support would be of inestimable value in helping people cope better with their new situation and the uncertainties it brings.
What was your best REHACARE experience?
Julia Wagner: I haven't been there yet.
What else I wanted to say ...
Julia Wagner: I wish everyone who is reading these lines a lot of strength and confidence.I wish everyone who is reading these lines a lot of strength and confidence.