Topic: I don't understand....they don't understand
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I just read a post that made me think of what it was like working with the Deaf. (The email was in regards to people not understanding)
I had 4 years of undergrad work but didn't really start learning about working with the Deaf until I started working with the Deaf.
I recall talking to the back of my students heads several times when I first started.
They looked normal. So, I reacted in old habits when I was trying to deal with something. Just as we look normal, so people react to us in old habits.
I would also have the teachers who were on yard duty come to me and complain about my students not listening to them. The Deaf Students were on the play ground with the hearing students.
I would watch from my classroom as the yard teacher would talk to them. The first thing I noticed was that he or she was not making eye contact before trying to communicate with the deaf person.
When I asked the duty teacher if she had made eye contact they always thought they had even though I had witnessed differently.
I have always thought it would be great if I had one of those signals over my head as in the cell phone commercial. Can you hear me now. Then others could visually see how low on resources I was or if I was functioning high enough to hear them. My Deaf students needed this too.
WE function so many years one way. It is difficult to step out of the box and understand what it is like. I think it is a gift some unique people have. I think most do not.
WE have had to adjust because we are living the ups and downs of this condition on the inside although we look normal on the outside.
You can't see fatigue, exhaustion, weakness, buzzing in the ears, pressure in the head, pain on the inside, inability to focus even when the eyes look normal, inability to hear even when the ears look normal and I am sure many other things will come to mind after I send this.
I visited my parents for 2 weeks last month. My Dad called and said that it was too much for my Mom for me to live there. But, perhaps I could move to their area and take care of them.
Boy did that hurt. (Not that I wanted to move in with my parents....but because they didn't understand what I was dealing with)
The way I have adjusted to this is to really watch who I am around. And unfortunately, to spend a lot of time alone.
Even living alone, I battle with myself. I really get frustrated that I am not able to just get up this am and go for a cup of coffee with a friend and perhaps some yard sales..or have her come to my house and help out as she offered.
This friend talks a lot and I don't have what it takes to process what she would like to share with me this morning. I am too low on reserves to even get dressed this am.
Yesterday I got dressed by talking myself through it. OK, KAM...what do you need to do to get the job done. Take off the robe. Down. Find some underwear. Done. Now what. Rest. OK. Now what. Find some jeans. Done. That was easy. The jeans were on the bed. Now a top. OK. Not so easy. Chest of drawers or closet. Chest of drawers. Done.
I cried while trying to get dressed. It just shouldn't be this hard. Why am I able to get up and get dressed without even thinking on some mornings and other mornings have to talk myself through each step? Just what is going on inside my body for it to react like this. Is it because I did too much the day before. Too much was about 20% of what I used to do.
So, I think of something positive that gives me hope.
Now, if I could only get that call letting me know they have a service dog for me...I wouldn't be alone so much and would have unconditional love to boot!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Going out to eat was one of the first benefits I noticed to communicating with sign instead of voice.
One can communicate with a mouth full of food and no one gets offended!
And yep...it is impossible to pray with your eyes closed and your head bowed if you are communicating via your hands....that is if there are others around joining in....if it is just between you and God...no problem.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Kam , Thank you for that insightful, descriptive picture of what it is to have Lyme . Your thoughts of those days when one's brain can barely function to be able to pick out clothes to wear are right on target.
I know its true that on the days you feel 40% functional, one does tend to over extend and will likely feel miserable for several days after.
Such is the nature of this beast . Its also true that we do become isolated due to lack of energy to interact with others. This is hard, but I hope you do have a friend that could meet you for tea or something on your better days.
We need to let friends and family know what our limitations are, but a good friend will be sensitive to those limits, and I hope be there for you when you need some company.
I hope your family will be more thoughtful of your circumstances; often they lack education about this illness. I recall an excellent web-site for folks with chronic illnesses that have a very nice well written, not too long, article for families and friends to read about being ill and what to expect or not expect from them.
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
KAM,
If they dont understand by now, they probably never will. Even if somebody gets hit with a chronic illness themselves, they cant turn back the clock and redo what has already happened. Some times they just cant deal with your pain and suffereing so they dont try. I have people like that that cant relate, so I just dont share too much info there. Just leave well enough alone and pass them by. At least on that subject. You can always use other subjects to connect with them on.
Once, when I suppose I was venting, about a real problem I had was told "We dont understand it therefore we are not talking about this any more". Sort of hurts, but at least you know where you are with those people. Thats a positive within the negative I guess.
Kam, Working with the deaf is surely a noble and righteous endeavor. I am not sure I could do that. So can you sign fluently? (At least better than I can spell and type???)))
This post brings up alot of issues that really need discussed, GREAT post KAM!!!cause I remain--just don--
Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Don,
Thank for the feedback. I wrote the post more for others who were having to live with people on a daily basis that don't have a clue.
I am glad I am not having to do this myself.
RE: The signing. I have lost a lot of my skill...not that it didn't need improvement when I was using it. I am probably back to primary grade level if that. HA!
And I think your thoughts on using other subjects to connect with is a good idea.
I wonder if someone who is living with a clueless person daily has tried this and if it works for them.
Weeza,
I am currently living in a small apartment. I have owned my own homes most of my life. So, I do miss not having a yard and this is a concern with getting a 4 legged friend.
But there is a large park near by where he or she could run and play.
Today, I woke up thinking that it has been a long time since I have had to stay in my PJ's for two or 3 days in a row.
I am usually able to get up and get dressed every day now. I still can't take showers every day as I did before lyme.
But, at least I am getting dressed every day for the most part. I have noticed that some things we don't realize are changing until something happens to help us recall. Does that make sense?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Wow, Kam, I can surely identify with you today...I'm still here in my PJs...the only thing I've done today is read posts and respond.
I just couldn't get the wherewithal to ready to go to church even though we didn't have to be there until 10:30..
I, too, hate living like this. My 86 year-old mother can and does get around better then I do.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Rosie,
I haven't heard the word wherewithal in a long time. It was fun to read your post just because of that.
Well, church starts in 7 minutes and I am still lying here wondering if I took an excedrin if it would help or not. I guess it doesn't hurt to try. It didn't seem to help yesterday.
What do you say we run away today.
Before, I knew I had lyme and was still working.....I walked into a coffee shop before going to work that morning...I must have looked like I felt....because the store owner said "if I were you, wouldn't go to work...just run away from it all.
For some reason that made me life and helped me to get to work. I realized I could run away from it all if I wanted to that day.
I also realized I really did like my job and didn't really want to run away from it. I just wondered why it was so hard for me to do.
Now, I know.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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