Being the Change

Post by Rachel Weeks

Change is inevitable. It is a part of life and unavoidable. Sometimes we are faced with a condition that gets us up close and personal to change on a daily basis.

I have a condition called Usher Syndrome that has affected my hearing to an extent that I am considered severely hearing impaired by audiologists. I also have a condition called retinitis pigmentosa and currently have about nine degrees of my peripheral vision left for me to use. That’s a tough pill to swallow when at one point I could see the full range of peripheral vision.

My remaining hearing has been supported by hearing aids, speech therapy (both private and public school system) and very patient teachers, family and friends. I feel for the most part I have adjusted to the hearing world well. I am currently pursuing a Ph.D. in Rehabilitation Psychology, and I enjoy most of what “hearing” people enjoy; music, comedy, presentations and the like. I have to be vocal about my needs and let people be aware of how to support. I have very tiny hearing aids and most people will not notice at first. Even though I come across as very hearing I probably only retain about sixty percent of what is given to me (just a guess.)

My hearing impairment is something I feel very well adjusted in, and I have very healthy emotional feelings around it.

The vision side of Ushers, however, is a different story. I acquired this aspect later in life, when I was nineteen. I went from driving to not driving overnight. In the span of two years I went from twenty five degrees of peripheral vision to fifteen degrees, which was pretty drastic.

In the span of four years I experienced optic nerve drusen which is elevated optic nerves that causes issues with central vision, mainly blurriness. I also began developing cataracts as well. During that time period I went down to nine degrees of my visual field. While all this was going on, I began my family and brought two beautiful girls into this world. I moved three states away from all my support of family and friends. That was tough as I couldn’t drive, I had a growing family and I did not know anybody where we were moving to. I also completed my M.A. in Rehabilitation Counseling.

There were tons of things changing. There were tons of adjustments made. There was also a ton of determination. I had decided early on I wanted these things and I would make it happen because I wanted to experience life to the fullest. I had nothing to prove – I just wanted an abundant life and was not going to allow Usher Syndrome to deny that life for me.

Life is constantly changing for me, and continues to do so. What I saw yesterday, I may not see in three months. Every day, however, I am always looking towards the day to show up and experience the most I can. I decide to live in abundance even when things like my vision are slowly being taken away.

My favorite quote is “Whether you think you can or you can’t, you are right.” I think I can, therefore I do. The only way Usher Syndrome can deny me if I allow it.

A photo of Rachel Weeks winning first place in an athletic competition

A photo of Rachel Weeks winning first place in an athletic competition

The main thing I do is decide what it is I want. I do not allow any thoughts of how my vision or hearing could deter that goal. Or anything else for that matter. I get connected to why I want these things. Like I said earlier, it is never about proving myself but to experience. I get clear as to why that experience is important to me. And THEN and only then do I start strategizing the how. It gets frustrating sometimes. That is when I get creative, research, get determined and continue moving forward even when things like not being able to drive, see the material being presented or navigating a new town seem really scary. There is a way and there is support out there for us to access. All we have to do is believe it is there and begin putting our energy toward it.

One of the best feelings is when things start getting really tough and you are not sure that you can pull it off, there is a breakthrough and then the goal becomes real – because you meet someone, find out about a support network or things just align. Keep at it, like the cliché says, where there is a will there is a way.

Some of the organizations that I have used in the past are the state vocational rehabilitation department, Lighthouse for the Blind, university disability services, MABVI, Challenged Athletes Foundation and social media. Social media has opened up so many doors for me and I feel so blessed to have found my best friends, resources and organizations that are there for folks like myself. They are my light in my life. Sometimes I feel it’s worth having Ushers just because of these people.

Change is part of life. Whether it is from a condition like Ushers or something else, it is up to us how we navigate that change. I rather like being the driver in life rather than allowing Usher to be the driver – what do you think?

To learn more about Rachel, visit her website: http://theimperfectjourney.com/

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About mabvi

Pressing Need The number of seniors with low vision is expected to double by 2030, as the “baby boomers” experience sight loss such as glaucoma, cataracts, diabetic retinopathy and macular degeneration. Low vision makes it difficult to complete activities of daily living, puts elders at increased risk of falls, and complicates health care compliance. There is a pressing need for low vision services today more than ever, to ensure people with vision loss can continue to live the lives they want. Elders are the fastest-growing and most vulnerable population of persons with sight loss. Four of the five major causes of blindness are directly related to the aging process: age related macular degeneration, diabetic retinopathy, glaucoma and cataracts. According to data published by the Commission for the Blind and the National Society for the Prevention of Blindness, there are an estimated 105,000 elders in Massachusetts with serious sight loss who cannot receive state-funded services because they are not “legally blind.” Nevertheless, their vision impairment is serious, and without appropriate intervention, can have a devastating impact on their independence.

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