Monday, November 18th, began my first official week here at HK. By now I was use to some things, still transitioning, but people and routine were beginning to set in. From 9 to 12:15pm, I met with the vocational Services instructors. The first order of business was a lengthy questionnaire about my interests, my hobbies, my work experiences, what I like, what I don’t like, and about me. Through this talk, ideas were discussed of different places I could have informational interviews, where I might be able to get an internship, and potential paths of pursuing. I have alot of different interests, so there was alot of ideas thrown out. One really awesome opportunity is for me to get into technology training, especially for the ICanConnect program. I’ll explain what the ICC program is. The FCC, set aside funding for each state to help those persons who have a combined hearing and vision loss, to receive equipment for communication. If this meant communication would happen using a Deafblind communicator, or an Idevice, or a computer. The program would provide the equipment, and then provide the training on the equipment. Of course deafblind persons had to be within an income level, had to be a documented deafblind person, and have a need. If someone like, myself was married, might not qualify for the program. Funding for the equipment could not be purchased from two different programs, like for example for students who might fall under VR, vocational rehab services. So because I have taught some adaptive technology, it would be great for me to get into that. So there is a long application, and a process in order to get trained, and be approved for the program to train deafblind persons on that equipment. So hopefully the VS instructors will help me get into that program. That was my morning. In the evening, a new student arrived. Thank goodness I wasn’t the new kid on the block. It was so awkward to have people come up to you and ask who you were are all of the time. The new student now has the room that I was put in originally. Nothing much else was noteworthy.

Fast forward to Tuesday. Again for the first two class periods I had the VD, vocational Development department. This time my original instructor was out, so a nice other lady filled in. this particular two periods I worked on a test that would determine other interests and potential paths. Like for example you would need to rank careers and jobs by like or not like. It was a long test but we were able to get through it in two periods. It was sort of funny by the end of the test, the substitute instructor knew what and how I would answer the questions. Would anyone like to guess what my results showed. My results showed that I am an S=social person, an A= Artistic person, and E= an enterprising person. Again and would anyone like to guess what sort of positions, jobs and careers persons who score in those categories get into? Yes a social worker. Hmmmm did me really need that long test to show me that? Nope, but I need to remember that I am an in evaluation period. I just need to do what I need to do, so that I can eventually go home. Atleast the instructor and I got some laughs out of the test.

In my second half of the morning classes, there was a HOH group, Hard of hearing group. This was more of a support group for those of us who are HOH, who are losing their hearing and those who are already deaf. Nice group and very helpful and informative. More of this group session was me, telling people about myself.

In the afternoon, after lunch, I had my first mobility class, the longest thus far. Again more getting to know you stuff. There were several waivers that I needed to sign, in order to go out into the community. We also talked alot about my goals. She was very surprised to know that I had been using a cane for so long, so this meant that she would not need to teach me this. We talked about challenging me in regards that my hearing is not reliable, and going out into the community and turning off the hearing aids, to work out how I would do this without hearing. The thought of this scares me totally and completely. Not to be able to see, not to be able to hear, but right now whenever I go out, I hear only noise, its overwhelming, and confuse my brain. That is not productive to have just noise in my ears. So if I were to rely on my skills of orientation to get around, and not the hearing it might help, as the noise can be distracting too. I am definitely up for the challenge but it does scare me.

Tuesday, made one week that I had been at HK. Emotionally this was the hardest, because this just meant the more days I had been away from hubby. With that said, the more days that go by, the closer I am too, being reunited to my husband at Thanksgiving.

Wednesday, was mainly different classes, like Communications, Creative arts, tech, and VD. In the morning I met with the social worker again, second time. That was a nice talk, time for me to talk about my frustration with my hearing loss. I think it has helped in my transition but as a soon to be social worker, I am not the best patient for therapy.

During technology, I got to play with a few different braille displays. One dumb display, which means a display that has no internal memory but is more of a braille terminal with interfacing with a computer or Idevice. The second display was an in-between of a dumb display and a note taker type display. A note taker has the functionality of a computer in the sense that it has a word processor, has the capabilities of getting on the internet, doing emails, playing games and so on.

Wednesday made my first official week of class mark. Again every day that went by, was closer to me being able to see my hubby at thanksgiving. But this is also where I began to have issues. Almost every single night hubby and I would talk on the phone, late into the night some times. I love talking to him on the phone, but it also doesn’t help that there is no physical contact. I miss him so much, beyond words can even begin to describe. Every minute we are apart, feels like pain, feels like my heart is slowly draining of all its blood. Like drop by drop my heart is losing its blood, losing life, from the separation of being away from my husband. It physically hurts, my heart longs, it aches, for my hubby. This paragraph is not even the beginning. I miss my hubby more than there are specks of sand or dirt on the earth. I miss him more than H2O atoms that are on our earth. The separation is hard, and we still have some time to go. Every single night my prayer is to have this time, the time here that I need to go fast, that I learn what I need to do, and be away from my hubby. That our hearts can hold on until we reunite again.

Before I go into the drama of Thursday, I will explain hubby’s adventures. On Sunday, hubby’s traveled to PA, with a stop in to see me on the way. They celebrated his birthday with him on Sunday night. Monday, hubby went to work for half a day, and then traveled to Harrisburg for the Governors committee for the blind. Monday night hubby stayed in a hotel. Tuesday morning was hubbies meeting. I have in the past gone to these meetings, and know many of the people who are on the committee. Tuesday afternoon, hubby jumped back on to Amtrak and returned to Philadelphia. Hubby was home by 4pm, in time to change his clothes, eat dinner and relax for a bit. At 7pm on Tuesday, hubby headed to his next meeting, the elder board for our church. If you remember correctly this is typically a meeting that takes forever, and could go late into the night. On this day, after hubby had been away from home, done all of the traveling, the meeting ended at 10pm.

On top of all that, Tuesday was hubby’s birthday. I won’t even go into how guilty I feel for not being there for hubby on his birthday. Poor hubby I think wanted to avoid the day, one because I wasn’t there, and two because of how old he thinks he is getting.

Now on to the Thursday drama, Thursday morning I was seeing the low vision clinic person and then the eye doctor. A staff person walked me from the dorm building to the training building. In the lobby I met up with the low vision clinic person, who then walked me to her office.

On the way to the low vision clinic office, pup and I were walking. My pup has a bad habit of looking into every open door on the way. She loves to window shop. We were passing the creative arts room, and pup looked in. I will stop here and say that there are like 6 other guide/service dogs on campus. One of those dogs is a pure service animal. What tasks the dog performs, I do not know. I think, it’s a hearing dog. So as we were walking, the dog barks at my pup. I didn’t think anything of it at the moment, and we just kept on walking. I did notice that my pup started to shake, to be distracted, and just act funny. While we were in with the low vision clinic she was okay, but we went to the eye doctor and she would not lie down, she was restless. This happened several other times, when this dog has barked at my pup. This incident would make 3 times.

I then went on to other classes of the morning and then to lunch. After lunch I mentioned it to my Case manager that I was uncomfortable with what has happened in the morning, and that I had left my pup in my room because she was stressed out. She asked that I talk to my O&M person. O&M was my last period that day, where I did speak lengthy about the incident and how I felt about it. She said that she would take care of it, and we left it at that.

During tech class, I was able to connect my IPhone with those braille displays that my tech instructor showed me the day before. I was paired with the Humanware Brilliant display, and then my case manager came in and notified me that I had a package. My first package yet. I knew nothing of this package and didn’t know who it was from. It was such a wonderful surprise, such a treat. I asked my case manager to help me open it. We then opened it and then there were lots of goodies inside. There was a letter included so she read that. The package of cookies, MnM’s, a candle, a little stuffed reindeer, and twisted peppermint hand lotion was sent by neighbors that go to our church. They had also provided meals to hubby recently too. I don’t know them well, but it was so nice. They did have a baby, a little girl who is now 3 months old.

By the time I did all of that exploring of my package, my IPhone had locked its screen, and had disconnected from the braille display. UGH! So then I worked for a while to get it reconnected. I had to make the IPhone forget the device, and then it would reconnect like it was supposed to. Of course then time ran out. And I was off to another class.

So of course the afternoon was come back to the dorm at 2:30, relax for a while, and then go to dinner at the senior citizen hour of 4:30pm. At 5:30, there was a trip to the stop and shop, a grocery store. I got more soda and a few other things. After I was done getting all of my items we all met in the Starbucks, where I got a Carmel Mocha. We then headed to the dorm from there. When I got to the dorm, I went right to my room, because I knew that puppy had to go to relieve. Here is where I will go into detail again.

So I was walking down the dorm hallway, as my room is at the end of the hallway. I was heading to the lobby, as I was going to take pup out and speak to a residential staff person. Then I go around the corner of the hallway, and the dog, the dog that has been barking at my pup, barks really loud at my pup. My pup literally turns around and pulls me out of the door. I knew she had to go break, to relieve her, but this behavior was so unusual for her. So I follow her out, more like I get pulled outside, I allow her time to relieve, which she does, and I then play with her a bit. She won’t play too much, as she is shaking again. She is very distracted and is slow to go back in. When I get in, I ask that staff person who I was originally going to speak to before I took pup out where the dog was. They were on the other side of the elevator. The staff person and I talked about what just had happened, which he did see. We gave pup a treat, and she did calm down a little bit so wasn’t shaking as bad. I can’t hear what is happening with the other dog, so I don’t know what is exactly going on. Of course the staff person had no clue what should be done, because I had heard from him, and from other staff people that day was that. Because it’s a service animal, that person has just as much of a right to have his dog here. And yes although that is right, if that dog was a true service animal it would not be barking at my dog. After I had calmed down a bit I called a friend who lives here on the island, who is on the graduate counsel for my guide dog school. She gave me some good ideas on things to do, and would also call and report it to the school, both HK and the guide dog school.

Also before I forget, when I saw the eye doctor, I had alot of questions. He had seen people in his practice that have my eye disease, but no one has seen it here at HK. I asked the doctor if there was any corresponds between my eye disease and my hearing loss and he didn’t know of any, but said that he would ask around. He said most likely it is not my eye disease that has caused my hearing loss. I also asked him about the effects of the drugs I was on for the stem cell and cornea transplants, and yet again, he didn’t think that they had anything to do with each other. That he suspected that there was too much time in-between from when I took the drugs to when I started to have a hearing loss. Okay, another answer that no one has ever been able to give me. This doctor has worked here for many many eons. But this also does not help me to identify the cause of my hearing loss, so more questions to be asked. I also did get a referral to a human genetic doctor here in New York that I might contact to see if he can give me any leads on where to go next.

Now on to Friday, the day began as normal as the others. I first had Independent Living, where we practiced sweeping. And although I don’t like to do so, she showed me a different way of doing it. Then I had a SDS, which I spent in the library, taking to the information specialist there about my hubby and me. We talked about my love story and how I met my hubby. She is a really cool person, so I didn’t mind at all telling her how I met my hubby. Then I saw the audiologist. The Audi made quite a few changes to my hearing aids. Specifically she changed and tweaked settings that my previous Audi had no clue how to make. She also worked on the speech settings. As of lately it’s been that syllables and letters from words have been dropping, or that I don’t hear them. Prime example, There was a staff person here named Peter, but I had been hearing it as Pete all of this time. Only when it was finally finger spelled to me, did I get it.

For my next class I had a SDS again, but on this day I had a meeting with one of the management persons here at HK. I wanted to meet with her about the dog issue, as I had been encouraged by other staff persons to speak up. She promised to say something to the person and to work it out. Of course it was Friday, right before a holiday, so I am not sure how much was done. But I am determined not to, let it drop. Later that afternoon, I spoke to the guide dog school too.

Of course the afternoon was typically normal for HK, I went to classes, and then all of sudden classes were over. Overall it was a good week. In some points it seemed like the week dragged on forever, and at other times, the week flew by quickly. Another student left, one that I had been close to, in the morning. In total there were 3 more students who departed. Of course I suppose this means that more will be starting soon. And just like last week I was dreading the weekend, the fact that I was sort of stuck here. But with that said, I am not nailed down here, there are no chains that hold me here, if I wanted to go out, I would just need to pay for a cab and go.

Stay tuned for the next installment of the life of Marsha at HKNC…later!