We are still looking back on my HKNC Training time.
Well, I know some of you are keeping up with my blog because I have gotten several e-mails checking on me, since I didn’t post last week. Well, I didn’t blog because I was in the hospital for a little while and then ordered to stay in bed for several days.
It was on Thursday afternoon when I returned to the residence hall for lunch. I looked on the way back to see if there were any smokers at the bench. That is very hard because I only see shadows with a little bit of color in the very center. Distance is not very far at about 20 feet on a good day with extreme blurriness. I did see one smoker on my way to the dog park as they call it here. I went “cross country” to take Joey to busy in the designated area. On the way back up to the residence hall door I looked, but I didn’t see any shadows that looked like possible people around the smokers’ bench. As I approached the door, I suddenly had a complete shut down. I couldn’t talk much less breathe. I turned around to see what might be causing it and finally saw a smoker about 5 feet from me. I saw a dark shape hanging out of where his face should be. I grabbed my inhaler as I went into the building. I couldn’t suck in the med. I managed to get my door open and pulled out my nebulizer, but I was struggling hard for air by this time and feeling a bit weak and lightheaded. I was afraid I was going to pass out. I went out in the hallway holding my nebulizer. I thought I would head down the hall to the nurse to get help, but I ran into the smoker right outside my door. He is totally blind and frequently gets disoriented since he refuses to use the mobility skills that he is being taught. He is a bit young and hardheaded like most kids his age. Anyway, I can’t even be around a smoker because of the smell off of their clothes, especially just after they have smoked. I turned around thinking to head into my room, but got scared as I almost fell. I went across the hallway to PATH which is where the mentally disabled deafblind live and work. They have to have staff with them one on one at all times. I knew there would be staff there. I couldn’t talk and most of the PATH staff is totally deaf anyway, so I signed nurse. Fortunately, that was easy enough, and they immediately ran past me to get the nurse. I went to my room to try again to get my nebulizer set up. I couldn’t see much of anything by this point. I kept trying to find the plug-in, but couldn’t. A few seconds later, the nurse arrived and took the nebulizer from me and got it set up and plugged in for me. I worked hard trying to get the med in my lungs.
After a while, I thought I was better. The nurse was going to help me over to the training building to sit with her for a while. We couldn’t leave yet because there were smokers in the front of the building, I sat in the lobby waiting. For whatever reason, I starting shutting down again. The nurse said she was going to get me to the hospital. She called my case manager to come take me there. I did another treatment, but it was not working. The staff made the decision to call an ambulance. I will shorten the story here, so I won’t bore you too much. I received a breathing treatment in the ambulance, five at the hospital, and two epi shots. Since I had had my normal breathing treatments before the attacks, I received a total of ten doses of meds. The ones at the hospital were more than my usual Xopenex, though. They had a steroid in them, as well. I was finally released late that night after a chest x-ray showed my lungs were clear. I was kept indoors all weekend long and missed classes Friday. Staff was told to take Joey out for me each time and my meals were brought to my room. They were instructed to check on me every hour 24/7. I got caught once trying to e-mail my staff to let them know that I was out of action for a few days. They “threatened” to tie me to the bed. OOPS!
I continued my breathing treatments every two hours around the clock until Sunday night. By Sunday night, I was feeling much better. Until the rain came in… About Ten o’clock p.m. My chest began to sting and then tighten up again. I felt bad all Monday, but I went to classes and did my best. I went to the nurse to nebulize every couple of hours or so. I got better as the front moved through. The rest of the week went fine health-wise until yesterday as another front moved in. I am nebulizing again every two hours, taking my Advair, etc. The chest hurts continually now as well as the sharp pain I get when breathing in. I wheeze when I exhale. I can’t hear it, but I can feel it. The nurse says I sound terrible. My face is pale, and I haven’t been able to put on enough makeup to cover the the black circles growing larger and deeper in color under my eyes. My doctor at home knows that I have been to the best Allergist and Pulmonologist in the state of Ga. They have told me that they have done everything that they can to help me. My primary doctor wants me to go to a Pulmonologist and and Endocrinologist (for my diabetes) here in New York to see if they know something my doctors at home don’t know. It is worth a shot. I sure don’t like living like this. Please pray for me. I don’t want to go home before my training is finished, even though going home sounds really good.
Thanks to a couple of very sweet and possibly, brave employees here, the smokers’ bench was moved away from the building and my pathway right after I was taken to the hospital. Val, my CLC teacher and good friend, and Mia, my case social worker who is fast becoming a friend by listening to me, went in to the head person demanding to know why I had to go to the hospital when the simple answer would have been to move the bench. I was told by someone else that Val was not nice or quiet about it. I appreciate it very much. It was nice to know that someone understood and cared. People just don’t seem to understand how serious asthma can be. It is very scary not to be able to breathe. Even today with all of our medicines, asthma kills many people every year. My case manager, Molly, and Vocational instructor, Elissa, stayed at the hospital with me. Molly rode with me and Little Joe in the ambulance and stayed until I was stable. Elissa came in and kept me company telling me all about her Jewish religion which totally fascinates me. Elissa is a practicing Jew. I admire her for keeping true to her beliefs when many Jews and Christians have made it just a part of their past or something they do on their Sabbaths. It hasn’t been easy for her either. Many people have treated her rather badly because of her faith. Anyway, I enjoyed her company.
Some of you may want to know where Joey was during this time. Joey stayed by my side the entire time. The EMT’s didn’t want to take him with us. They thought dogs weren’t allowed and tried to convince me that he would be scared by the sirens. Well, I know my rights. Southeastern Guide Dogs covered it well. Guide Dogs are allowed by law to ride in the ambulance with me and in the hospital. The hospital staff was fine with it and the dispatch assured the EMT’s that it was ok. Joey was perfect. He stayed right next to me with his head on my lap and let me scratch his ear. He didn’t move as the EMT had to get around him or when the siren blasted. In the hospital, he stayed near me except when they were working on me and then he watched intently from the side . When they were finished for a bit, he came back up to me so I could scratch his ear again. He is as much a therapy dog as he is a guide dog. The hospital staff from all over came down to see the wonderful dog in the ER. As usual, Joey was more popular than me.
Well, let me tell you about my training when I was in class. In mobility, I played around with a braille compass to help me find directions.
"Braille Compass"
Natasha also showed me a tactual map used by the blind to navigate the NYC subway system.
"NYC Subway System's braille Map"
"Braille Subway Map with subway line symbols for stops"
Then I went around the building blindfolded without Joey just using my cane. There are sections of the training building that I haven’t been to yet, so that area was a bit confusing. I have an overview map of the building in my head that I use when I navigate the building. I can even figure out the general layout of certain parts I haven’t been to just by using the information that I do know about. I know that the training building is like a giant box with one main hallway that traverses the outside wall. One section of that hallway is where administrative offices are that I never go to. However, I can visualize its pathway by knowing that it connects with the other hallways on either side. There is also a section of the building that was added on to the corner of the backside of the building. I have been to that section on the downstairs part. Therefore, I know the basic outline of the section upstairs. I did pretty well navigating the building being blindfolded going slow enough to not hurt anyone if I ran into them. I can’t hear much regardless of wearing the hearing aids and FM. With residual vision, I can guess a lot of stuff. However, take that vision away and I might as well be totally deaf. Going slow keeps me from jamming a cane into someone’s leg or knocking them over. At one point, I became confused because of an alcove. I thought I knew which way to go, but I wasn’t confident enough to trust my information. I used my braille skills to read a few door plates and figured out that I had turned down Case Manager row which was exactly where I wanted to go. Case Manager Row is what I call the long hallway where all of the case manager’s offices are located. The first door I read didn’t make any sense to me. I was reading Debbie Hdj something or other. It didn’t make any sense to me, so I thought I wasn’t recognizing the braille. The next door said Pete somebody and I knew he was a case manager. Natasha clarified that I was reading the first name right, but she is an immigrant from another country, so her name didn’t have any vowels in it until after several consonants. I was reading it right just didn’t think so.
Natasha also showed me a different method than the one I know to go up and down steps. I wasn’t too confident with it, so I will explain it after we have practiced it again.
On Wednesday the 31st, we had a haunted house put on by staff and students. I don’t really celebrate Halloween, but I did go through it. This one was different. It was designed to be tactual for the deafblind students. They used silly string to help students feel the “cobwebs”, supposed food was all gooey and sticky. They used a cauliflower head to represent brains, modified olives to represent eyes, etc. They had balloons everywhere so the students would feel things as they walked through and lots of bubble machines to enhance the cold, moist feeling. Each student had a guide to help them through and interpreted everything to them in whatever mode they needed such as voice over into a FM system, tactual sign, braille communicator, etc. The entire script spoken by the tour guides (spooky sisters of the house) was signed and written in braille to be read. The name of the fictitious family was the Braillers after the name of the typewriter used to type braille. Several members of the supposed family were deafblind and had a curse put on them which had given them creepy special powers that they used to get revenge on others.
You get the picture. I know many of you do not believe in celebrating Halloween, but I wanted you to see how the staff brought the holiday to the deafblind. They worked hard on making this a fun event for all the students regardless of their disability. There aren’t many in the real world who would go to that much trouble. It was fun.
In Technology, I am beginning to focus more and more on the braille display as Bill taught me how to use the internet and a program called NexTalk that will allow me to use the TTY for phone calls. Telephone use is one of my biggest hurdles with the school. As many of you know, I do not do well at all. My staff are picking up a lot of my phone calls for me and will continue to do so, but there are times when I will need to use something. We are just going to have to keep working on that area.
I am learning my sign language in CLC. We practiced hand shapes and continued tactual practice. All of my communication is now in tactual sign language. My headaches are beginning to disappear as I get better at understanding. That is a very good thing. I would love to stop using my migraine medicine. In time, I hope I can. Migraines are not something that I am prone to have. My doctors say they come simply from trying too hard to see and hear.
Val took me to a grocery store here, too. We practiced using communication cards and the screen braille communicator to purchase what I need. I found that I need a couple of more communication cards in my book to cover some common questions. The SBC is going to work really well, especially as I get faster with my braille reading. Donna works with me to help me learn my sign vocabulary. Here is a pic of her in the classroom:
"Donna, again, but she really did teach me an awful lot."
I have a few more pics for you, too. My staff wanted to see pics of Ginger, my Vocational Evaluator.
Joey loves Ginger. He tries to help her, too. He always wants to walk where he is between the two of us. Ginger has Multiple Sclerosis. She doesn’t let it stop her though. She whizzes around that building way too fast for anyone to keep up with.
"Ginger and Joey"
It was a bit sad this week, too. My friend, Jane from S.C. went home for the weekend. She had asked me to pray for her because she was afraid if she went home that her family who has refused to support her stay at Helen Keller and wanted her home that they wouldn’t let her return. Well, that is exactly what happened. We do not know if she will ever return. I do know that she desperately wanted to get more training, so please pray that God will open the hearts and minds of her family.
"Shelby and I saying goodbye."
Also, my friend, Shelby from Atlanta, went home yesterday. She wanted to stay as well, but Ga’s Vocational Rehab didn’t want to continue paying for training. Shelby is 27 years old and almost totally deaf and blind. She is intelligent, but was poorly educated. She is quite capable of learning, but needs to catch up. The state didn’t want to pay anymore right now. Shelby had been here since May.
"Joey waiting for me to leave a class."
This is Joey waiting on me to get ready to go to another class. Isn’t he cute?
Well, I have just about covered things for now. Keep praying for us. We are still praying for you, as well. I have a meeting with everyone on my team and Scott, my husband, by phone on the 16th. Hopefully, I will be able to let you know when I will be coming home and a report of my progress. Until later, keep praying
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DeafBlind Hope 