Usher Syndrome

Have you surprised yourself living with #HearingLoss , #MenieresDisease ,#Tinnitus, #UsherSyndrome, or another hearing and balance condition? It can be any accomplishment, big or small - academic, professional, social, athletic, or artistic!

This is ME.

Me on the left, is what you can see.

Me on the right, is what I can see.

I am legally blind. And #HardOfHearing.

#UsherSyndrome. A combination of #RetinitisPigmentosa (RP) and #HearingLoss. RP is defined as gradual loss of vision leading to #Blindness. My peripheral vision is closing in and I have night blindness. I wear hearing aids, but, my hearing hasn’t gotten worse, so that’s a good thing, right?!

This is me. And who I am.

It does not define me.

it’s. just. me.

Just the other day, someone was shocked that I didn’t drive. He didn’t know the reason behind it, and when I told him, it was almost as if he felt bad. That’s one thing I don’t want. People feeling bad for me. There are others who are dealing with issues on different levels, in the ways they know how…

I explained my condition, kind of laughing it off because I’m used to the reaction when people look at me and tell me that they would have never guessed I was blind. What do blind people really look like, really? As for me, I don’t like making it obvious. I guess I try not to let it define me, because the fact is, I am still who I am. Whether I can see or not. Whether I can hear or not.

Trust me, I would love to drive; but, my license was taken away from me about five years ago. At the time my license was taken away, a friend of mine told me that this place could fix my eyes. I guess I was hopeful and wanted to believe it. Boy, was I wrong! A couple of weeks after my appointment (which I knew went to sh*ts), I felt like my whole world was crashing down. It felt like I lost my independence. You know how it feels to be told in a letter that your license will be taken away because of vision loss?

I was sobbing as I held the letter in my hands, wondering what in hell I was going to do. I couldn’t breathe, as the tears just kept on coming. My girls were worried about me, wondering what was wrong. I tried to keep calm for them, yet at the same time, I felt so lost and so overwhelmed in that moment. A single mom of three, how was I going to manage?

I couldn’t get to work from where I lived and would have to depend on someone to take me. Thank God my brother was around to help me out. My parents were more than supportive, and my sister texted me every day to make sure I was okay. But, I felt like I was a burden. How could I continue to live this way?

I felt like I needed to make some kind of change – I had to make things easier. So, within a couple of months, I was transferred to a different location, enabling me to take the train to work every day. Up at 4:30 am. Getting the kids ready. Walking to the babysitter to drop them off. Off to the train station, and work for 8am so I could be back in time at night to pick up the girls. Dinner. Some girlie time. Bath. And bed.

The 45 minute walk to and from the train station made me do a lot of thinking. Even though my landlord helped out a lot when he could, the stress was building up and it was showing. The stairs and steps were all memorized. I sat in the same seat on the train, every day. I walked the same path, every day. All so that I wouldn’t trip. All so that I wouldn’t bump into people, to avoid the dirty looks and rude comments. But honestly, how would they have known I had vision loss?! It wasn’t their fault!

But, after about a year of trying. After having stitches under my eye because I bumped into a printer I didn’t see the paper tray thing sticking out. After having to buy new glasses because I busted mine into a drawer while trying to get to another drawer. After getting hit by a car because I just didn’t SEE the damn car! The bumps. The bruises. I couldn’t do it anymore. I just couldn’t.

Call it a nervous breakdown, but I was done. My #Anxiety was out of control. The tunnel was getting more narrow, and I was hitting rock bottom. My mom rushed to come be with me because she must have known. She must have felt my fear and unwillingness to get myself out of the house. Trust me, moms know everything, even from afar!!

I ended up having to leave my job. I thought I could try my marriage again, for the girls; however, that didn’t work. But, I decided that a life in the country with my parents, until I got back on my own two feet, would be best. And where I’m at now, confirms the decisions I’ve made.

What happened, happened (and for the reasons it did), because everything happens for a reason.

Just because I’m blind, doesn’t mean I am restricted. Sure, there’s things I can no longer do, and sure my anxiety keeps me from doing some things I enjoyed doing. But it doesn’t mean I can’t be a mom or a wife, or anything I want to be. I just have to do my best.

My friends understand when I turn them away because most times, I would rather just stay home and not talk to anyone, and just focus on what I need to do for the day. And even online grocery shopping has been a blessing because I don’t have to deal with all the people and try looking for things on the shelves anymore!

But, I have my family. I have Mimi (my canine vision dog). I have my cane in case I need it. And. I am fortunate to still have some vision left. The last minute trips I take and things I want to do, is because I want to cherish and experience the time that I still CAN see and enjoy with my children and family, and close friends. Make memories with the people I love. Money is just money, and life is just too damn short.

Sure, I get frustrated when I bump my head against a cupboard, or a door is left open I didn’t see and I wham right into it.

Sure, I need to slow down a bit and focus on what I’m doing.

Sure, I see things from my heart that maybe others don’t understand.

And sure, I may have issues. But the worst thing ANYONE can say to me, is that I have issues.

I know I do!! We all do in some way!!

If you truly know me, then you already know I deal with the ongoing changes in my vision loss, my anxiety, my bouts of #Depression, the care-taking of my children, and just every day stresses. It’s called life. And if you really do know me, then you know I deal with the thoughts in my head on a daily basis that just multiply every time I think about all the little things.

Yes, I may have issues, but I have my reasons.

Yes, I may have issues, but that doesn’t make me any less then anybody else.

I want to live my life as much as I can with the people I love. I want to see as much as I can with the people I love.

As I hold my daughters’ face in the palm of my hands as I kiss each of them good night, I wish I could see them. But I can’t.

All I can do is feel their presence, hold them tightly, kiss them, hug them, love them. As much as I can. I have to accept the changes that come every day.

Sure, I cry from time to time, but it is OK, right? We all do, and I’m sure there are times when maybe you’ve felt overwhelmed and wondered what the hell to do. But. It WILL pass. You CAN keep pushing forward!

Me, I am so, so lucky for my support – my husband, my parents, my children, my siblings, my friends…I am so thankful for all that my husband does. He puts up with me!! I am thankful that he and the kids have learned my weaknesses and remember to, for example, leave things where they are, and don’t move from point A to point B within seconds, or I will be talking to a wall!!

There is light at the end of the tunnel.

There is love and hope, and I know it may get more frustrating as time goes on, but, I HAVE to. And I will.

Someone once told me to smarten up…that I am a lioness.

I have to believe this, not only for my sake, but for the people I love as well.

Be the lioness, or the lion! Be powerful within, and live life.

Be thankful for the beauty around you and just remember, there is a rainbow after the storm!!