Re: Dependence vs. Autonomy ...
You appear to be placing yourself in the role of parasite, a role that does not appear from the outside to suit you at all.Dependence, in my view, is one of the characteristics of a new being. A child is dependent upon its parents; a musical tyro is dependent upon his/her teacher; a teenager with a learner's permit to drive depends on a licensed adult for the privlege to drive; and so it goes. What you can do is (begin to) think of yourself as a new person, learning the ropes of getting along without full eyesight: groping, tripping, taking the bus, enduring shots, etc. What you will emerge as is a stronger, more careful and caring, more sympathetic, perhaps wittier, ... and so on, person, able to help other people in ways no one would anticipated. Able to keep a BB on course, able to teach others how to use it, able to recommend new ideas to people, ... In other words, just the valuable and valued person you have already become. So quitcher bellyachin'. --- Lynn
Re: Dependence vs. Autonomy ...
Got everyone to thinking positively, didn't I?Judy :)
Re: Dependence vs. Autonomy ...
Judy,I guess I interpreted your post a litte differently than Lynn did. I don't see dependence as parasitic, but rather as requiring assistance to do whatever and whenever (more like Webster). And autonomy is probably not realistic for anyone who shares space with others (work, home, highways, whatever). These may be opposite ends of a spectrum in which we reside somewhere in the mid-range. There have always been things I have needed help with (not always the same things, thank goodness) and some things in which I can be autonomous (maybe only in my backyard). These things vary from time to time. I'm not sure what things you are asking about changing. Certainly not Webster's definitions. I can not let dependence be a negative and enjoy letting others do for me sometimes. I can focus on the areas in which I can be independent (deciding which couch to crash on when I'm having a bad eye day). I can develop interests and skills which match my capabilities and allow me independence in enjoying them. I can play Pollyanna games and try to find the good in bad situations. I can develop a support network in which I'm comfortable asking for help because I can then help someone else in return when they need it. I can decide that no matter how much I liked the life I used to live, I can redefine my life and have a new one that I like just as well. I can be active in the pursuit of good health and learn to accept that I'm going to have some bad days (I did before BEB, they were just different-bad). I can end this post before it gets any longer and no one can read it. Virginia in AL
Re: Dependence vs. Autonomy ...
Sometimes we have to learn how to receive. A difficult thing for
some of us. Asking for help can be a humbling experience but it doesn't need to be humiliating. Ann Doyle
Re: Dependence vs. Autonomy ...
I had this conversation with my neighbors just the other day. They are slowly but surely learning about my disability and all that it affects-everthing. Luckily my husband is awesome but sometimes it is very scary to think of what would happen to the girls and I if something happened to him. Ours lives would be so limited here with no other family that I would probably have to move to Nashville where my parents and sister live. I know the things we do aren't "necessary" but I would hate for my daughters to miss out on the zoo, gokarts, vacations, water parks, etc. because they have no one to take them and participate in the activities with them. I continue to trust daily that God will provide and hopefully that means my 35 year old husband will remain a "healthy, strong hunk with a great attitude!!" for a very long time! My dog died last week and after crying for hours afterwards my eyes, jaw, etc. were a mess. I was really hurting both physically and emotionally. It was like once the tears started over Cinder I couldn't stop crying about everything (how I look in a family picture, dependency, and all that I have lost in the last 6 years.) My sister, a 29 single mother of a 3 year old whose dead beat ex does NOTHING to help, reminded me of all I have gained in the last 6 years - 2 healthy, beautiful girls, an even stronger relationship with my hubby of 12 years, and a faith in God that I never thought my controlling nature would ever allow me to have. I think it's ok to morn what you no longer have from time to time as long as we don't forget to be thankful for what we do.Kelly in Dallas where the heat is kicking in!!
Re: Dependence vs. Autonomy ...
Lynn, Virginia and Kelly have all given excellent replies as to how we deal with our limitations and our abilities (some of which are new). I don't want to think of myself as a parasite because, even though I do require help from others in many instances, there are still things that I can do for others and I would hate for them to think they were being parasites for asking for my assistance.Life is a continual give and take of assisting and being assisted. Like Virginia, I asked for help in lots of different things through the years before I had BEB, and will most likely continue to do so. My abilities and talents in lots of areas are severely lacking, but there are other talents I have which can be useful to others and I am willing to share what I can. I think it would be a rather lonely, sterile life if we were totally independent and self-sufficient. Then again, I suppose we can each think of someone we know who is, in our opinion, truly a parasite! Woe is they! As with Kelly, my faith in God has increased as I deal with this health limitation on a daily basis. There are times of extreme frustration and even bitterness, but mostly I am thankful that He is helping me adapt my life to new pathways and I am doing things that I had put off for many years ... such as writing. Now ... I need to quit writing here and let someone else speak. But let us all try to see some ray of sunshine in our remodeled abilities. Sally in North Idaho ... where there are too many rays of sunshine to suit me, but it is a bit cooler today.
Re: Dependence vs. Autonomy ...
All of my life I was a "classic overachiever" who simply worked hard and got what I wanted. I had to learn the hard way that certain things are out of my control and the control of others. Because of my situation, I have become much more sympathetic to the problems of others and try to help when I can. We did spiritual gift tests at church and I now rate high in "Mercy" whereas several years ago that was low on my list. I pray daily for those in need and I also try to provide meals for friends having babies or surgeries, etc. My illness has softened me to some degree and that is not a bad thing!!
Re: Dependence vs. Autonomy ...
Kelly,
We did a survey of pre-BEB personality traits here a while back and many of us confessed to the "overachiever" trait. It is hard to give up control of many things - I still fight that from time to time. But you are right - it probably has made us better people to give up some of that control and accept help when offered.
Virginia in AL
Re: Dependence vs. Autonomy ...
We just did spiritual gifts this past Friday nite at
church. Mine is also "Mercy". Mercy has always been
my thing. But now, "Exhorting" is up there. BEB has
allowed me to stop feeling everything has to be perfect.
And I am finally free to sit back and Enjoy my family and friends.
I love enjoying all the little things in life that I used to
take for granted. For everything I am able to do now, that I
wasn't when BEB came into my life, I can stop and smile, filled
with love and awe of what God has done for me.
I can hear the "birds singing again."
And I truly believe the same can be true for each one that comes here.
Mindy in NY
Re: Dependence vs. Autonomy ...
Hi Judy,
Good thought provoking question. You've gotten some very good replies.
I agree with most of what has already been said.
My answer to this would vary from day to day depending on my symptoms and how I was able to cope with them on a given day.
Some days I do feel rather like a worthless, unproductive, handicapped individual. I'll crawl into my little hole of self-pity and wallow around for awhile and then pull myself up and try to make it through another day as best I can. A support system, sense of humor and a will to continue doing what you can do is necessary. Some days nothing is going to work and I do feel more miserable and vulnerable and worthless on those days. I take heart in the fact that all days are not that bad. Some days are reasonably normal (the meaning of "normal" has changed) and I am able to do things that make me feel like I am a productive human being. I don't really think that my goals and dreams for my future have changed-maybe to a slight degree. I will have to depend on others for some of these and in a different way but I would have been depending on those people for certain things, anyway, BEB or not. I can't share the driving aspects and my days have to be shorter with more rest for my eyes but the people that I depend on aren't perfect either. My family doesn't expect me to be perfect (I'm the only one that chooses to expect that). I certainly still love them with their imperfections. I don't know as we can do anything to change our degree of dependence or independence. In my opinion, all we can do is change how we look at things and modify our expectations to a degree that we can live with and be happy with and that has to come from within. Shirley in AR. Who just wants to change where she lives. I keep having visions of mountains and streams and low humidity and cool mountain air.
Re: Dependence vs. Autonomy ...
I am fairly new to the bb. I have always been dependent on other people for some things, but I've always liked to consider myself pretty independent. At this point in my life, I have people around me who are pretty good at building me up and don't let me stay down very long. I've had to change some of the things I do, and maybe the way I do things. Somethings just take me longer to do than they used to. It is easy to get down & have a pity party on days when my eyes don't work like I want them to. But you know usually at a pity party you are the only one there, & thats not fun for very long. My faith in God and knowing how much He loves me and my sense of humor is what I hold onto.
Shirley, I am glad you are back, I've missed reading your posts. I have been to Colorado a couple of times. I'm like you, I think I could get used to living there. At least you have hills in Arkansas. In Kansas we have very few--mostly flat. I grew up in Missouri where there were hills. I love going to beautiful places and just look at scenery. I just enjoy looking at things. I think I've always appreciated my eyes, but even more now since I have more trouble seeing.Billie
Re: .Nature and it's beauty
Thanks for the welcome back, Billie.
Yes, I think that I have found the perfect area for a BEB community. I could really get used to living in that area.
My neighbor was over the other day and he and his wife can't make up their minds where to spend their vacation coming up in two weeks-it's a toss up between the Rocky Mountains or the Gulf of Mexico on the beach. I had to laugh and just say "bugs, heat, humidity and beautiful ocean versus cool mountain air, no sweating, very few bugs and spectacular mountains and streams." We do all like different things, though. I could tell which way he was leaning, though.Billie, I enjoy looking at things, also. I always have. I do so appreciate nature and it's beauty. It is very relaxing. Shirley in AR.
Re: .Nature and it's beauty
Hi Shirley,
A BEB community might be fun. We've been to Colorado Springs twice and one year we drove down to Darango. Part of that ride down there was scarey to me. I am afraid of high places, but am much better than I used to be. Last year I went to the top of Pikes Peak on the Cog Railroad. There is no doubt, there are beautiful places there. Do you think you could see better on your trip, since you've had your surgery?
I hope you could. What is the usual recovery time for the surgery you had? I have thought about it, I have apraxia. Actually that is what I have the hardest time with. The botox seems to control the other pretty well, except they've had to increase the units a few times. I get 100 every 8 weeks.
Can you tell me what a holistic chiropractor is? Chiropractors I know but not holistic.
Billie
Re: .The Cog / Myectomy recovery time/Etc.
I've been up to Pikes Peak on the Cog, also. That's the only way that I like to go up there. I've driven up (as a passenger) in a car about 3 times and got a terrible headache each time but didn't have that unpleasant experience while going up on the Cog Railroad. It is quite a spectacular site.Yes, I could see better than before my surgery. I still had very unpleasant days or parts of days that my eyes would give me lots of trouble but for the most part they were better. They will still shut down on me from the muscles in my forehead and lower lids. I haven't had any botox in my forehead since 5 weeks before my surgery. I did get some botox in my lower lids about 5 weeks ago but with the swelling that I still had it went down lower in my face so I am still getting some squeezing from my lower lids. And the excessive tearing is quite persistent. I need to call them about that and see what they have to say although I don't know that there is anything that can be done but wait it out. Everyone differs with the recovery time and what is done. Some people can go back to work within a week or two. I wasn't working so didn't have to worry about that. Virginia, I believe, said that she was driving within a week. My eyes are not that good. I am about 3 months post-op and still have itching (it went away for awhile but is now back) and a slight amount of swelling that is worse in the mornings and the tearing. The surgery did help with the apraxia problem and overall I'm quite pleased with the amount of improvement that I have had so far. The apraxia was my main concern and the reason that I had the surgery. I was also getting 100 units of botox every 8 weeks. I still have BEB but am more functional now than I was. Holistic just means to treat the body and the mind as a whole instead of treating one or the other. Delaine or Mindy probably could explain a holistic practice better than I. Delaine has done a lot of nursing work in this area. Shirley in AR.
Re: Holistic
Holistic healing is just as Shirley said, it's the mind/body/spirit connection. The patient is active/vs passive in his/her treatment.
Stress plays a major role in many illnesses, you have to learn
to listen to your body. Using your mind you learn to keep your
mind and body in balance for optimum health of your mind and your
body.
Delaine, jump in anytime and help me out here, please :-)
Mindy
Re: Holistic
I have begun yoga again and am finding it helpful in forcing me to relax, even just for a little while. A couple of weeks ago we had to put our dog to sleep and I fell apart. The stress and crying so much made my eyes, jaw, and neck so much worse then I wanted to cry from the pain! The yoga helped me to focus again. I also bought a relaxation cassette "Calming Sea" which is simply sounds of the ocean - waves crashing, birds singing, and light instrumental music. This $6.00 tape relaxes me in a way I would have never imagined. I usually play the tape with headphones in the evening after the kids are in bed, close me eyes and pray. I feel so focused on God during this time and feel the connection gives me peace, even for a short while. Any other ideas would be appreciated!Kelly in Dallas
Re: Holistic
Hi Kelly ... Sounds peaceful. Where did you get the tape? Thanks.Sally in North Idaho
Re: Holistic
I found it at Target for $6.99. I don't know if they have Targets in all states but it is like a Kmart or Walmart. We just got back from Florida a couple of weeks ago and it was so great to leave the patio door open at night when the kids were in bed and listen to the waves break along the shore. When I saw the tape I knew that was the one for me.
Re: .The Cog / Myectomy recovery time/Etc.
I have never been to Pikes Peak so never went on the Cog Railroad. I did not think that there were any others left other than the original one here at Mt. Washington. That one is scary enough, I can imagine how the one at Pikes is.Sorry to say that I have not felt any relief from the lower Myectomy. I need to try Botox again and maybe this time it will help. I will keep you posted....Alan
Re: .The Cog / Myectomy recovery time/Etc.
Alan, I'm pretty sure that the Cog going up to Pikes Peak is not the original one. It was in good shape and I didn't feel scary at all. One of my sons is afraid of heights and it didn't bother him, either. It was just really beautiful, breathtaking scenery-even went through the clouds up towards the top. We saw marmots and fox on the way up. It pretty much goes straight up instead of winding around and around like you do when you drive up. We didn't get a chance to go up this time but would have liked to. Sorry about the results of your lower myectomy. Do you think that he didn't get enough of the muscle or what? Have them go real easy on the botox in the lower lids if you are still having swelling as the swelling will cause the botox to dissipate into unwanted areas. It got my upper lip. My lip is still pretty much droopy but my lower lids are already starting to pull up on me again to close my eyes. I'm having to increase my Klonopin to help things out. It has only been six weeks since I had the botox for my lower lids. I could tell about two weeks ago that my lower lids were starting to spasm on me again. I can look in the mirror and see them quivering although I can't really feel the quivering sensation.
No spasms or pulling from my upper lids, though. They just itch. I'm not even really having too much problem with my forehead which sortof surprises me. Hang in there. You might still see some improvement with your lower lids. I'm not too big a fan of the lower myectomy myself, but then the botox does work for me and it hasn't for you in the past. I probably would consider having the lower myectomy done if the botox didn't work. Give it a try again. Get some EMLA cream. That area might be a lot more sensitive, now. Shirley in AR. where it was 98 degrees today but only felt like 108. Can we all say sweat?
Re: .The Cog / Myectomy recovery time/Etc.
Shirley, surely you know that ladies (particularly Southern ladies) are supposed to "perspire," not "sweat." But I agree, when the water is pouring off one's head down into one's already sensitive eyes ... it's SWEAT to me!!Sally in North Idaho with all the drapes closed and the light still coming through. I need black out blinds!!
Re: .The Cog / Myectomy recovery time/Etc.
I always heard it this way...Men sweat, ladies "glow"....Mary
Re: .The Cog / Myectomy recovery time/Etc.
I guess I have been glowing a lot lately. The temp. & humidity here are the same as Shirley's in Arkansas. I have been having a lot of trouble seeing lately, I will wait & see when the humidity goes down if anything changes.
I am afraid of heights, and the Cog didn't scare me. I was surprised. I can't imagine going up in a car though. I've been to the mountains several times, and every time I go I get better they are so beautiful.
Billie in Kansas is 10:30 p.m. and still very hot & humid
Re: Drapes
HiSally,I sometimes get fed up with the fact that every afternoon/early evening I have to close up all my window blinds against the sun and heat. You know I also have window film on the living/dining room and kitchen windows but I still have to close up. Our bedroom has shears, regular drapes plus room darkener drapes. Its such a shame to close out the light and view, but I can't bear that strong sun - oh well what's a beb'er to do:-) June in Toronto - luckily today its down to 22degC - so much better than the super hot weathr we've been having.
Re: Drapes
I agree. I have wood blinds throughout and solar screens on the entire back of the house but I keep the blinds closed year round. Natural light kicks my tail and it's just not worth the headache.Kelly in Dallas
Re: .Nature and it's beauty
The thing about the trees, cool mountain air and streams is ... even if your eyes refuse to open, you can inhale the freshness and smell the beauty and feel its coolness on your skin.Welcome home, (to the BB) Shirley! I've missed you!!! Sally in North Idaho where it was predicted to be another hot day, but surprise" It RAINED!! Oh to be a weatherman and still get paid for those off-track predictions. Rain has gone and it's warming up, so will probably have a temp climb tomorrow.
Re: .Nature and it's beauty
Now Sally, what makes you think you couldn't feel the heat, humidity, and mosquitos?I've definitely noticed that the humidity is giving me more problems than in the past. I'd be interested in trying less humidity to see what kind of difference it makes in the BEB or if it is a separate issue. Virginia in AL, who knows about feeling all of the above (and had rather not).
Re: .Humidity and it's effect on BEB
Hi Virginia,
I can't say that I noticed any change in my symptoms with the lower humidity. It was just more comfortable. A lot more comfortable.Shirley in AR. who hates mosquitos and high humidity.
Re: .Humidity and it's effect on BEB
COOL, moist air actually makes my eyes feel better ... as during a nice gentle rain on a cool day. I would do much better healthwise all around if I could like in a climate such as Judy does on the Washington coast. HOT humidity ... everything is worse!Sally in North Idaho where it's tolerable today; sunny and warm.
Re: .Humidity and it's effect on BEB
sally, i just posted for the first time in awhile today , exactly on this subject. maybe we just have to get thru the summer.
Re: .Nature and it's beauty
Hi Sally,
Thanks for the warm welcome back. I missed you, too.
Did your black eye get better? How is the botox working this time for you? If you have another ptosis, we're going to have to talk to your doc and explain how to keep from doing that.
We'll have a clinic and make all the doctors go and show them how and where to give injections. Of course, they will be the patients for this event. No EMLA cream allowed because they know that it doesn't really hurt.Shirley in AR. feeling vindictive
Re: Dependence vs. Autonomy ...
My divorce and this disorder has cured me the demanding part of my
nature--getting what I want, where and when I want it. So the "doing
my own thing" (independence) is somewhat limited but I definitely
appreciate everything more now. The dependence part I have given to
God and He is providing in that area. I am still working and driving
on a limited basis. Most of my friends let me make the decision
regarding that. But I have one dear friend who will not even consider
letting me drive when we are together. She comes to my house, picks
me up and off we go. And she does it smiling!! I guess those of us
with this disorder take some calculated risks in our quest to remain
independent (I think of Alan tumbling off that ladder, etc.)but
through some trial and error, we figure out what we can and cannot do.
And, hopefully, in the meantime, we manage to stay in one piece.
There is a fine line here for me--acceptance of what is and living my
life as fully as possible within the confines of this disorder.
I think I may have strayed from the original topic, but that's my
take on it. :<) Joanne M. San Diego, CA
Re: Dependence vs. Autonomy ...
I have only had this for about 6 months but find it to be limiting my life considerably in alot of areas: driving, walking, talking with people. I was very upset this week to realize that I haven't been able to reach a lot of my goals for my next performance appraisal. I have been so busy concentrating on walking around the office and doing my work that anything else was forgotten. How do I express that to my boss? Tell her that seeing is so difficult that my work is taking a backseat? Can I be protected by the Amer Disabilities Act for not completing all of my goals or job responsiblities until this thing is under some control. It isn't like I am not trying, I am doing everything medically to help with this condition.Anyway that has brought me to the realization that I once again need to not think of myself as dependent but to take charge with the limitations that I have. I bought a book yesterday on working on that and have a better outlook just by starting to take charge. Someone once told me when I was downsized out of a job that the best thing to do is to take action. By doing so you are in control and the situation is much easier to handle emotionally. I find health challeges allow us the opportunity to take stock and become some one new. Coleen in PA who is going to work on her family tree with her husband and maybe publish it in the future for family members.
Re: Disabilities and our jobs - link
Hi Coleen,
You might want to go to the link that I posted that is out of the BEBRF Main Pages and read it about your job situation. It might be helpful. http://www.disabilityclaims.com/index4.html
Shirley in AR.
Re: Dependence vs. Autonomy ...
I have had beb/meige for 6 years. I quit my job as a cpa 1 1/2 years ago and am currently on disability. My health challenges definitely allowed me to take stock and become someone new-a full time mom and wife. I have had to accept the fact that all those years in college and the large salary weren't enough to fight what was wrong with me and by fighting to keep my old life in tact and ignoring my disorder I was not doing myself or my family any good. I finally woke up to the fact that surviving each day is not living and spending the rest of my life wanting to die was no way to raise a family. I am still very limited in what I do (driving, reading, etc.) but my kids have a mom that can bath them, feed them, and play with them and they have to be my focus. I wish you luck with your job and with your illness.Kelly in Dallas where the only place to be is at the pool (with ball cap and wrap sunglasses I might add)
Re: Dependence vs. Autonomy ...
Kelly,
You said it all when you said that your children are your focus now, and they have a mom. Don't feel bad that you had to give up that high salary or that you "wasted" all those years in college. They helped to make you the person that you are now. Even with limitations, you can still be a wonderful mom and as far as I am concerned, there is nothing more important in this world than being a "mom". You can afford it and you have a supportive husband, so enjoy being a mom and wife and allow yourself to still need help with that. It is a big job and difficult in itself.
My visor is off to you.Shirley in AR.
Re: Dependence vs. Autonomy ...
Kelly-Please don't ever feel that your education was wasted. Years ago, when I couldn't go to colleege, I was crushed. People were just starting to say "educate a woman and you educate a family". I've been a Mom and "kept woman"-stay at home wife for 46 years now, and I like to brag that I have nine degrees - from my five kids. I know it was my determination and vocation to see that THEY all got an education! And they are our pride and joy! Mary
Re: Dependence vs. Autonomy ...
Thank you both so much for your encouragement and support. I believe everything in our life has a purpose. Although I would gladly return my beb in a heartbeat, I made a decision to stay home when I may not have otherwise. I truly LOVE being home with my kids. Teaching my daughter to read and ride a bike, playing Pretty Princess with my 3 year old, cooking meals, doing laundy - I love doing it all. I could do without the housework now that I no longer have a maid, but couldn't we all!! I was lucky to have such a good job with large bonuses, stock options, and disability insurance. Because of that we were able to put some money away for the kids' education several years ago so at least my hard work can help my kids in the future. One of these days I will figure out how to post a picture to the bb so I can show off my girls!
Re: Dependence vs. Autonomy ...
Kelly, we'll be looking forward to "meeting" your girls. I am happy for you that you are financially able to be a full-time mom. You will have lots of special little memories to cherish. And never feel that your education was wasted; all those things you learned are still in your head and will benefit you and your family in untold ways. Enjoy!Sally in North Idaho
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