A story and resource about fighting a mysterious illness and adapting to blindness.
By Andrea Mitchell
My name is Andrea, and I was officially diagnosed with MOG antibody disease in 2013. At that time, there was not much known about the disease. The first two years after the diagnosis were especially hard as I lost most of my sight in both eyes. I am writing my story to help others and provide a resource for the newly blind.
Stepping back in time, I remember walking out of my neuro-ophthalmologist’s office just feeling lost. I had dreaded going into his office knowing that I was not going to have a good report. I had gone through a lot of relapses at this point and remember not being able to read anything on the eye chart. Everything was black in my left eye and very blurry in my right eye. I could not see all the colors in the book he used either. I must have scared my doctor and nurse because I was crying so hard. They didn’t know how to respond, and I felt like no one understood what I was going through. I remember going through the different stages of loss. I stayed in the anger stage for two years. I had lost most of my sight and my life as I knew it. It started out with my inability to drive, not having my health as I used to know it, loss of a great career and inability to engage with lots of friends. It felt like I had fallen down a rabbit hole into some mysterious world. I could not make out faces anymore. I was having trouble doing basic things that I had been doing all my life. I felt my independence slipping away. I have always been a problem solver, so I decided I needed to take charge and seek help. I went to see a therapist because I needed help to cope and redefine my life. It turned out that she would be instrumental in helping me find some of the resources I needed to get started on finding my independence.
Coping with Loss
When I received my diagnosis, there was hardly any information on MOGAD, and there were no Facebook groups or other support groups available. I told my therapist that even though I was given my medical report, there was no advice on how to adapt to being blind. She was instrumental in providing some resources and information to help guide my way through this new lifestyle. I am not ashamed to say how valuable those therapy sessions were at that time of my diagnosis and beyond. I was battling this disease to keep what little sight that I had left, and I had to keep my sanity and renew my life, albeit perhaps a little different than the old norm.
My first step was to call the Lions Blind Center, which is a nonprofit organization whose mission is to provide education, training, and certification for members of the blind and visually impaired community in Oakland, CA. The Center offers services such as computer training, job placement, and a vision clinic. They told me they could provide me with mobility lessons. I jumped at the opportunity. A person came to my house and brought a cane that looked like a regular cane but was white with a red tip. We walked around a little and he asked if that was enough. He said he did not want to start out with the regular long blind cane because that would take additional training. I remember thinking what a relief, but, unfortunately, it was not enough for me. I needed much more assistance than what could be received in an hour or so of introductory training. I called him back and he returned with the long blind cane. He showed me how to use it. I practiced using it around the neighborhood. While I was working on my new skills, I must admit I still was not comfortable being blind and knowing everyone I came across would know I was blind. I still persevered because I felt I needed more training with my mobility and daily living skills. Not being able to use my computer anymore was also a huge detriment.
My next step was to call the Department of Rehabilitation to see what they had to offer. I met with a counselor, and he gave me a referral for someone to come out and further evaluate my needs. He showed up with another person that was in the blind services department. It was the first time that I heard of a school that could give me my independence back.
Vocational rehabilitation services differ by state (https://www.askearn.org/state-vocational-rehabilitation-agencies/). Some states require that you are actively looking for work or education. Below are links for resources in California, but there may be similar resources available in your stare.
The school that was suggested to me is called The Orientation Center for the Blind (OCB). I took a tour and was amazed at all the school had to offer in the way of training. The training included mobility, computer, adaptive technology, braille, and daily living skills (such as cooking, cleaning, and entertainment as well as health and beauty). The mobility training included a tour of the guide dog school and some Juno training. Juno training involves an instructor playing the role of a guide dog, where the student is guided by the instructor while giving the basic commands of “Forward,” “Left” and “Right”. It is designed to train the student to use a guide dog. The only thing that caught me off guard was that it was a residential program. I was told that the program could last anywhere from 6 months to a year, which depended on the individual needs and learning process.
I decided to go, and it was the best decision I ever made. I moved in and went home on weekends so that I could spend some time with my husband and family. I was able to learn how to use public transportation in order to do this. We didn’t have Uber or Lyft in our area at the time and, being in Albany, CA, it was a good distance from my house in Oakley. It took me about a year and a half to complete and graduate from the program because I had continued relapses. I was definitely at the right place, though. I lost a lot of sight but was told by my mobility instructor that I had enough vision to be dangerous.
It was really tough in the beginning for me as I struggled to fit in. There were a mixture of ages and backgrounds there. Keep in mind that I had not been in a school atmosphere in a long time. I was very fortunate to find some good friends there that I still stay in contact with to this day. They blindfold you while you are in class so that you don’t use any vision for assistance. It is designed to prepare you for the future if you have a progressive condition.
The internet is a great place to look for articles and other organizations across the nation and abroad. For example, this article provides a great starting point for those looking for advice on where to start: https://www.allaboutvision.com/lowvision/resources.htm.
To read more of Andrea’s story and see a full list of resources for individuals who are blind, please visit here.