Last post Sun, Jun 01 2008 11:08 PM by helenchapman. 15 replies.
Coping with profound hearing loss after living in the hearing world most of our lives seems to be a common thread I read here. We endure an invisible condition and are accused of making it up, having selective hearing, or not trying to hear. We lose our connection with people and our lives are changed forever.
Contrary to getting glasses which can often correct poor vision, hearing aids or cochlear implants cannot restore or correct hearing back to normal again. They are "aids" but not a cure. So what to do? How to cope? Learn sign language or take speechreading classes? Find other deaf friends - where do you find them? Retreat into isolation?
I don't think my friend Joyce who wrote the following will mind me sharing this piece about coping. Joyce has had Meniere's Disease (like I do) and hearing loss for decades and is still hanging in there! It is of value for any illness or life altering condition.
Perhaps we can share tips on how we cope or where we find ourselves in this list of stages and how we can move on.
Stages We Go Through With a Chronic Disease or Condition
I put together this list of the stages that we go through, from the initial shock through acceptance and hope, when living with Meniere's Disease or any other chronic disease or condition. I was just thinking that the phases that we go through when first diagnosed and having to live with a life altering or chronic disease and how similar they are to the same phases you go through when grieving. 1. Shock, when initially diagnosed because it takes you by surprise and hearing that there is no known cause and no cure are harsh words to hear. Why me, why now? What did I do to cause this? You feel stunned, immobilized. 2. Emotional release or pangs of grief and distress. The feeling you get when you think no one cares and you are alone. Anger that your life is compromised and you can no longer function the way you once did. You feel helpless because things are out of your control. This is a time when you are desperate and seeking help and knowing that you may not find it and the medications, treatments, surgical procedures are not working in a way that you expected them to. The major pity parties and maybe even some denial (refusal to believe what is going on) fits in this area, certainly frustration is here too. (Include other emotional issues you have here.) 3. Panic, the feeling that you don't know what to do next and learning how to cope and manage things that are overwhelming you and you don't know which way to turn, what to do next. Doing the simplest things turn into major frustration and confusion and thinking rationally becomes impossible. I think this is when we are still grasping at straws trying to find the "magic" that will make us well. Which shall I try, what do I do feeling, where do I go for help and understanding? Why is this working for others and not working for me? 4. Guilt, when you realize that you cannot do all that you used to do and your life has changed and especially when having to go on disability. You feel guilt for not pulling your weight, for placing burdens on others that once you were able to handle. Your lifestyle is changing and it is out of your control. I lived the guilt stage for at least a year. Guilt when you no longer able to participate in social things the way you used to, etc. The guilt others inflict on you (and you allow it) when they tell you that you look fine and what is your problem and are you still not feeling well and how are you now that you aren't working, are things getting better? Constantly defending yourself and validating yourself to others. (Gosh I hated that!) Trying to prove that I still COULD do it all and feeling bad when I no longer was able. 5. Hostility and anger. Frustration could also go here again. Why me, why now. There is a feeling of total lack of control over what is happening and anger that you no longer can do what you used to do quite well. The inability to make yourself understood or to understand others. We have anger at those who don't understand and don't seem to care. We feel angry at ourselves for our own feelings. 6. Inability to resume a normal life, because what was a normal life is no longer possible. Everything has changed. Your life is upside down. The helplessness and hopelessness you sometimes feel. You are still trying to prove that you can function the way you once did and can't or not able to. You can't see anything positive in your future. You are too focused on the things you aare not able to do. 7. Acceptance, when you finally "get it"; that nothing will ever return to the way it used to be and you need to rethink how you do things and learn to accept help from others and admit your limitations. You can accept the dizzy days, the vertigo, the hearing loss, the inability to function normally, and all else that goes with it. 8. Hope, when you see a new way of living emerging and you are content with yourself and happy and can move forward but on a different path from the one you were on. You make accommodations and set short goals and realize that they may never bear fruit and you are flexible enough to accept that. You realize that there is still life in you and you just are living it differently. You begin to focus on what you are able to do and not on what you can't/not able to do. I have seen many people going through these phases of shock to finally acceptance and hope. I think that we see a lot of anger and hostility at times. I just say to myself that this is all part of the process. This is how I feel about the phases we go through, living with a chronic disease. I hope it helps others. Remember that we are all individual in the way we handle things and when we see anger, pity, guilt, that this is all part of the process before we can learn to accept our changed life and live with it and refocus on what we have that we are able to do. Some of us pass through stages over and over again or get locked in one stage longer than someone else. We all pass through at different speeds and that is fine. YOU are okay. This is NORMAL.It was only when I was able to look back on the path I had traveled that I saw where I had been. I remember writing this and giving it to my Dr. to let him know what I thought about how this affected me. He and his nurse said they had made that observation themselves about different patients they treated. I think he was happy to see that I had finally reached the hope stage because I was a terrible patient when I was in the denial, anger, and pity stages.
Joyce
As for the lack of socialization from a hearing loss, try learning ASL (as difficult as it may be for the 'older dogs'). Try going to a few Deaf/HOH events, especially now during Christmas time. Check out: alldeaf.com or deaf coffee chat! Good luck.
Great article, Joyce! It resembles me well. I am trying hard to work my way through to HOPE. With multiple disablities I feel like I am always "stamping out forest fires" or dealing with whatever is most troubling at the moment. This is a huge one, especially at the holidays when I feel so alone even in a crowd because I don't know what is going on around me. My friends just say that they will tell me later when I ask what has been said. "Later" never comes. So I stay home or visit one on one with friends when I can do what I need to communicate.
After Christmas I may be having surgery for cancer. How to communicate while I am in the hospital is a great concern. I don't want to have my hearing aides in 24 hours a day, yet I can't hear anything without them. How will I communicate when I first come out of surgery with no hearing aides? Has anyone else faced this?
Sunny, I would also like feedback on this topic. I have 100% hearing loss both ears, but I have a cochlear implant that gives me sound, but poor speech comprehension. It scares me to think of being sick or hurt or in a situation like you are facing in the hospital and not being able to understand the doctors. If my batteries die or in case of an accident and my CI is damaged or lost, I wonder how to cope with this.
Sorry to hear about your cancer and upcoming surgery. Keep us posted as to how you are doing and also how you managed in the hospital with your HAs.
Drama, I have taken some ASL classes and done the deaf chat thing. But all my friends are hearing - they don't know ASL, & it takes more practice than 1 hour a month at a deaf chat to learn to communicate PLUS make new friends. I work all alone every day and isolation and loneliness is a real issue with sudden total hearing loss.
hello sunny, it's nice to meet you. i have a friend who is deaf and she has someone that can hear for her when she goes to the hospital to interprete. i am pretty sure it is a law that you are able to have an interpreter no? sorry i am not sure but i thought it was. also i wanted to wish you luck on your surgery for cancer, i hope that you have a healthier and happy new year. take care sweetie
hi dramasteph and joyce, you have good advice trying to help others get through also.i am trying to contact my friend who is deaf, i think you should all have the right to an interpreter for free every time that you are with a physician especially. i will let you know what she says ok? take care loves
Yes, ADA says we have a right to an interpreter. But what if you are recently deafened and don't use sign? CART would help, but if you are sick, coming out of surgery, who can read a computer monitor?
Hi Sunny,
You have a couple of options you can use. The hospital can hire an oral interpreter if you are comfortable reading lips. The interpreter can also write things down on a dry erase board if there's difficulty with reading lips at times. You can also request a CART interpreter where everything is typed on to a laptop for you to read (the font can be enlarged to make reading easier). The hospital is obligated by law to communicate with you in a way that you are comfortable with so make your communication needs known in advance.
Wishing you a smooth recovery!
Thanks for the support and suggestions Mason, debbie and DeafMom. CART may be what I need to use. I don't know anything about it. Do they have to supply the computer?
One other concern is that when I can't hear the speaker will often turn to whoever I am with or whoever else is in the room and talk to them about me instead of to/with me. My family has all passed away and I am very alone now. I have no one to be my personal advocate and help me with communicating. I DO NOT want the docs or nurses talking to others instead of me with information that I NEED to hear and information that I need to communicate with them about. I do not lip read or see well enough to get by that way yet. I am learning. An ASL interpreter won't help either since I don't know enough sign language yet.
What about a sign in my room that reads "If its not important enough to communicate to me, please keep it to yourself." Or, "Communicate with patient only"
Of course, I can't do this, but its a thought.
hi again sunny, well i can totally understand where you are coming from about wanting everything that has anything to do with you to go through you instead of someone else, it is your life and you have the right to make desicions ect.. it must make you feel like someone else has control of you
Sunny399: Of course, I can't do this, but its a thought.
Sunny we have to advocate for ourselves. Nobody else is going to do it for it - even if we do have family members around, they could not really understand what it is we need unless we tell them. I do not sign, nor lipread. I have been trying to help my father with Alzheimers enter the nursing home. It is important information I need to convey and understand from drs & staff about my father. So I know a little about how you are feeling, and have anxiety about if it was myself in my father's position, how would I manage.
Anyway, you must tell your doctor and your surgeon ahead of time what your concerns are. Include the anesthesiologist in the conversation too. The hospital is required to supply you with whatever communication equipment you need. BUT YOU HAVE TO ASK FOR IT! It is their responsibility by law to do this. They must hire the person with the equipment and training to communicate with you, but of course they need time to locate and schedule that to happen. If you are in a smaller town, this may be more difficult to do. So start now and tell them you want CART (communication access realtime translation - also referred to as realtime captioning). This works sorta like a court reporter and they type all the conversation in the room by everybody in a shorthand software program that then appears on the equipment for you to read. The CART person shoud explain to everyone present that they need to talk one at a time & identify themselves so you will know who is saying what.
I see no problem with posting a sign in your room that says you are not able to hear and need everyone to talk to your face. (I have a visor card in my card that says Driver is Hard of Hearing and goes on to explain if I am stopped by police or in an accident that I am not being uncooperative, but cannot hear and then it explains how to communicate with me etc.) So this is a good idea you should follow through with and explain to all your nurses and other staff. You must not be embarrassed or nervous about this. Hospital staff have had other deaf people and if they have not, then it is time they learned!!! You will be helping somebody else!
Mason:I have a visor card in my card that says Driver is Hard of Hearing and goes on to explain if I am stopped by police or in an accident that I am not being uncooperative, but cannot hear and then it explains how to communicate with me etc.
This is a good idea; I am thinking of getting a doctor's letter that explains that I cannot maintain my balance on one foot and have nystagmus (related to my balance issues) for presenting at highway drunk checkpoints. These are common in California and because I have trouble communicating with the officers I tend to get hauled out and put through the "drunk tests" which I cannot pass even though I am stone cold sober and a Muslimah in hijab! So far I have simply hauled out all my medical appointment cards and things and have been let go; but I have real fears of winding up arrested someday because I can't pass the tests.
A major part of my social life used to be attending religious classes and sessions with friends; because of my hearing impairment I quit going because I became incredibly frustrated when I could no longer follow what was transpiring in the room because I can't filter background noise and my tinnitus makes it even harder.
Hello Sunny, I hope all is well with you! I hope this gets to you before your surgery.. but I just joined this site...
If you already had your surgery, I hope you got the service you needed. It sounds (no pun intedned!) that you need a CART provider. The hospital should have no difficulty in providing one for you. NO YOU DO NOT have to provide the computer, the CART provider does that. NOR DO YOU have to pay for it. All Drs and nurses should be talking to you directly ... not to the person next to you. If you can read lips, great, but do not wholly rely on that, no matter what skill at lip reading you think you have. (I consider myself an expert at it, yet I know I cannot wholly rely on my skill at lip reading for total communication).
Use the sign "Communicate with patient only" ... Remember YOU CHOOSE the method by which all others must communicate with you, especially since it is your health and wellness at stake! DO NOT LET ANYONE TELL YOU OTHERWISE! You must be wholly informed in all things related to your health and you get to choose how they must communciate with you. Insist on it! Do not back down. In addition, it is your private health information.
Please let us know how you are doing!! You are not alone!
Hi Mason, this is Great! Can I copy this to share with others? I know several people who may benefit from this! (I am on the board of directros of a non-profit agency who services the needs of the Deaf and Hard of Hearing community).
I can't say I experienced all of these stages; however, I grew up Hard of Hearing so it was a part of my life .. my entire life ... which may very well make all the difference versus someone who is late-deafened.
Thanks for posting this, I am sure someone can benefit from it!!!
Steve
Regarding the orignal subject of this thread, coping, by Mason, I know of the stages described, have experienced them all in various forms, and they are pretty well documented in literature about grief and illness, etc. Understanding this can be a great help. What I would like to offer is the AA prayer, although I am not a member of AA. It has helped me a great deal. I do not think you need to "believe" in God to use this, as it works well as a meditation mantra too [slowly repeated words in a quiet, undisturbed place with your eyes closed, over and over (for a period of 1-3 minutes to hours, as necessary and helpful)]:
"Grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference."
Also, message to Sunny: whatever stage you are now in regarding your cancer surgery/treatment, it is obvious that many here care, as do I, and I hope you will let us know how you are doing.
Warmest regards, Bonnie
