Can You Hear Me?

[me]

Hey, i've missed "the gang". sounds like we're all trickling back in here! al - i guess you had a good time in cuba? wish you were there now? it sure is cold enough here.

theresa - it's good that you're trying to ride this thing out a bit. i always say, things will work out the way tHey should.

carol - so sorry you've been sick. maybe you're body is giving you a chance to rest....kind of a blessing in disguise!?!

to the rest of you - hello.

there is nothing really new to report. at lest not physically, about nathan. mostly the news is about me, emotionally. 2 good things happened during the weeks around the holiday's. one is that we got into a good discussion about everything and the long and short of it is this...he is not going to budge, it is his problem, and when he's ready to talk about it or deal with it, he'll let me know. this made me soooo hurt & angry. i'm sure i don't need to give details of my specific thoughts & feelings but i just didn't know what i was going to do. i finally was able to settle within myself, at this point, there is just nothing i can do. worrying, being angry, hurt, etc. was not going to change things so it was a waste of time. we are a great couple, i love him and he loves me, so why let those emotions ruin it.

the second thing that happened is that it was recommended to me that i read a book about being spouse of someone with a chronic illness. at first i thought "no" because, after all, we don't know if he has one. then i realized, regardless of what is going on, it is as if there is a chronic illness. his symptoms frequently interfere with at least one of our lives on a regular basis. so, i figured it couldn't hurt.

the book was fantastic. it was by a lady whose husband had m.s. for 12 years and she interviewed hundreds of other spouses with illnesses ranging from asthma, diabetes, m.s., als, etc. tHey all talked about the many ways of dealing with the emotions and denial. one pointer was that especially down the road, some denial is not all bad and that can be part of what allows you to continue living as a normal a life as possible. i had to be realistic and say, yeah, at least right now, we can keep moving forward. the other pointer i got out of it is that it is normal to have all sorts of thoughts and emotions. this does not make you a bad person. it's what you do with those thoughts & emotions that count. mainly, it was just incredible how i felt i related to the spouses almost from the first pages. i didn't feel so alone, guilty, etc.

from all that, i've really been able to let this thing go and not to worry about it so much. that's also part of the reason i haven't been here as much. by visiting this chat room daily (sometimes more) just helped me to keep dwelling on my feelings. but, you all are so great and i definitely don't want to be a "fairweather friend" and i plan on sticking around. i will keep you posted as there is news and until then, i'll be your friend from michigan that cares a ton about you all. i will keep abreast of the cause and help when i can.

well, i've written a book here i think, i hope the post goes through!
melissa

 

[Theresa2004]

i posted to the webmaster to see if we can save our postings in draft form to return to them later if we are interupted. unless there is a spot here i have missed.

al, sounds as if you are having a real fun time lately, but we all hope they get you in gear for your cruisin'. just don't fall overboard after too much wine. but it was a funny story, thanks elaine for sharing it. i am not sure i want to be the one to ask about the "hot pickle", i'll leave that one for carol. elaine i will mention my friend in a minute, kinda link it up with melissas comments.

melissa, you should tell us the title of the book. it sounds incredible. i understand completely how hurt you felt, trying to be there, and he won't let you in to do so. the anger, frustration and in some ways betrayal tear us apart inside. the remarks saying that some denial is positive, i agree with that. i would imagine many of the forum will also. if you are constantly dwelling on it, it is always there, but if you can seperate yourself from it, even if it is only for a few minutes, it a few minutes of peace you may not have at all. how you phrased that area was perfect. there is nothing wrong with emotions. what scares me is what happens if they become too buried. it has been the denial and lock out which has hurt me the most, as i have said before. and no matter what i say, or how i say it, the same road block comes up. yes, elaine, i have heard from him, and in some of his messages he was looking at various activities which would keep him busy for years. activities which may not be appropriate for anyone with this disease, i say that for saftey reasons, balance, weakness etc. so i am wondering from what melissas book gave her, was you are trying to live normally, and if you bring down the wall to say you need help, support, you admit you are ill, from there you have to confront things which perhaps you don't want to. i am no psychiatrist, i am basing this on how the relationship has been strained as a result of poor communication, and denial.the problem is not with me, it is with him. will he continue to move forward, then when it all builds to the breaking point, will he ask for help? as melissa said, things will work out as they should.

maybe members of the forum would be willing to discuss that area, their experiences with denial, and how they either came out of it, or had help from loved ones in the process.

 

[me]

Any thoughts on theresa's question about denial? i'd be interested to know what the others think since we have people at all different points on the timeline here. have people found it a help/coping necessity or just a harm along the way? Any explosions down the road? maybe it's in finding a balAnce. maybe denial isn't the right word exactly. for me, it seems more of An intentional ignoring of things And turning my thoughts And actions to other things (like cooking, reading, snuggling, etc). it's still there in the back of my mind, but not all consuming. -melissa-

 

[Carol Deboer]

Hi girls,

denial....an assertion tHat sometHing may not be true. denial is an emotion tHat lets us believe tHat reality is not really affecting us. unfortunately, denial does fade, and reality does kick in. tHankfully, denial can take tHe edge off of our frigHt and fear of tHe unkown. until we educate ourselves to our "destiny" tHis emotion softens tHe blow of tHe HarsH reality. we were in denial for tHe first year of Henry diagnosed. However, tHe ailment marcHed on in spite of our doubt. we learned very early on, tHat tHis denial tHing is in fact "HealtHy", and i really do mean it. you Have to come to terms witH lots of cHanges in your life, wHetHer you Have a cHild, marry, divorce, buy a House, etc. denial does turn into acceptance at some point. wHen, i don't know, but it does. i do not tHink tHat we were "angry and in denial" we were just stunned tHat tHis could Happen to us. we trusted we otHer, loved eacH otHer, and just knew tHat we Had to ride tHis wave togetHer. so, wHen did out denial end? it Hasn't. i still am in denial tHat Henry could die at any minute. i know He will or could, but, my will makes me deny it. i want Him to live. However, tHe reality is , tHis cHapter in our lives will end. i won't deny tHat i will be angry and sad tHat tHis als tHing got tHe best of us, but, also, i won't deny tHat Henry was tHe best damn tHing tHat ever Happened to me. sooooo... its all relative i guess. denial, reality, acceptance, denial, peace..... just my tHougHts. i Hope tHat everyone can cope witH tHeir situation. it is not an easy tHing, However, laying low for awHile like we did at first , let us catcH our breatHs and decide tHat we would try to be in control of our destiny. i tHink we Have done a damn good job, i am proud of my kids, i am proud of Henry, for He Has taken tHis adversity and dealt witH it witH dignity and understanding, i am proud of our dear friends, too many to mention, but most of all i am proud of myself, because not matter How tired i am, How grumpy i am, i know wHen i lay my Head down beside my Henrys eacH nigHt, i Have no regrets. so, my dears , denial is just anotHer pHase of life, wHetHer it is in a good or bad way, is wHat you make of it.

Hang in tHere girs, it does get lots better..

love yas.... carol

 

[Theresa2004]

Hi. some very well composed points made carol. in conjunction with what melissa said also, i suppose denial in some form can be a healthy tHing to assist in coping with what lays ahead of anyone connected to tHis or any other horrific disease. but reality does set in, in my case, perhaps that is why i am somewhat on the outside looking in. the reality is we just may not be able to ride the storm witHin time constraints. however, they are making strides in tHis, and i have to remain positive that even the smallest progress can buy time for everyone. i am angry, angry that tHis disease has taken away a future barely begun. so i expect that we all have to learn to cope with the anger and dispare, and do what we can in any way to keep the loved one smiling. i am not about to give up yet.he still remains the best tHing that ever happened to me. the denial helps us not be hurt every second, like a protective liner inside our hearts.

 

[lhart]

Hi gang,
tHere are times, like cHristmas morning, wHen i say to myself "wHat would i be doing rigHt now if i didn't Have als" well i'd be doing tHis. or during tHe week wHen i'm sitting at tHe table reading tHe sunday paper, or watcHing tHe news at nigHt. i pick moments of tHe day tHat Haven't cHanged. tHey may be small, or not as comfortable but tHey Haven't all cHanged. tHis is my version of denial. tHe otHer nigHt my daugHter was in a dance performance at scHool, and i was tHere front and center and as i watcHed Her, i didn't Have als. so for me, denial, is allowing myself to ignore it once in a wHile. don't worry tHat reality slap is just around tHe corner but you get used to it and you deal witH it.
les

 

[Al]

Has anyone gone to the als society website and seen the new commercials for als. pretty good stuff. right up the alley of wHat you are saying les.

 

[karenmorrison]

i sometimes think that i am in denial as well...richard and i are enjoying our new love and maybe we are clouding over the reality. sometimes i do look at him and wonder how long will i be able to watch him sleeping, how long will i feel his warmth when i wake up each morning, when will the enjoyment of the laughter we share stop. we spend so much time hugging, sharing and laughing...oh there is anger, mostly on my part..i am a person that just goes when it is time to go, and with richard being so slow, i find i am extremely impatient at times...and i get angry with him...he clams up...and so goes the story....but we always make up....) that is the fun part....we are getting no support from our families...my mother is worried i will be worn to death as a caregiver as she was with my dad...not sure why the rest are so negative. richard and i have decided "the hell" with what others say! we know we love each other. i have been with so called "whole" men in my past, and nobody gives me the total feeling of being loved as he does. he has gone home for a week to get his things packed as he officially moves in on feb 5...and i dropped him off at the train, and missed him before i even left the station. we like the rest have challenges...but who said life was to be easy...i just know i feel content and totally loved, and will enjoy each and every second with this man.....

 

[Theresa2004]

Hi to all.
i can't believe How great a response from tHe subject of denial. tHis is wHat tHe site is about, support, opinions, experience.

debbie, i suppose a motHer is always a motHer, and perHaps tHe remainder of tHe family is scared for you. but you Have to do wHat you need to do, and in tHe end, no matter How long you Have, or don't, you love Him, and tHe feeling tHat you were tHere for Him will be witH you a lifetime. as tbear said at one point, some of inHerit tHis, some of us deal witH it naturally, giving us tHe cHoice. you do wHat you can, and love eacH otHer, tHere is notHing sweeter. i am like you, get up and go, so i can understand you impatience some days, but as time goes on, you will adapt to a slower routine. it is easy to be angry, However, tHis is not His fault. we all know tHat, but sometimes we forget.

les, tHank you also for your tHougHts and feelings. tHe more i Have read tHese replies and tHe more i Have generically spoken to my friend tHe last few days, it is giving me a more positive outlook, witH positive feedback encouraging Him to progress witH projects on tHe go, and avoid any negative feedback. maybe as les says, tHere are times you are not an als victim, wHicH aids in tHe coping mecHanisms, but also tHe enjoyment of life. it Has given me a different perspective as to my approacH.

 

[Theresa2004]

Ooppsss...i wrote deb...i meant karen.....i had just hung up the phone with my girlfriend debbie....sorry......................

 

[Elaine]

Hi everyone, you talk about denial,well first tHere's sHock.tHat terrible feeling you Have in tHe pit of your stomacH after tHe doctor tells you, you Have als. for me tHat feeling is always tHere. denial lasted a sHort time, i Had too many symptons to ignore it for to long.i really don't tHink anyone can Have denial for too long. but tHat's my own opinion.anger oH yes tHere's anger.i said wHy me ? wHat did i ever do to deserve tHis, i was mad for a long wHile
tonigHt was very emotional for me,i finally told everyone at work tHat i Had als.talk about a support team.... tHey were all crying .i tHougHt i was being so brave and Here tHey all broke down.i Hope tHey get it out of tHere system i couldn't take anotHer nigHt like tHis.
als cHanges so many tHings many tHings in your life,it's really never tHe same after tHat day in tHe doctors' office.
like sleeping ,i can't sleep tHrougH tHe wHole nigHt,two Hours top and tHen i wake up,and my mind is going wild never stops.How about you guys How do you sleep? good ?or bad?
no wonder we Have no energy we never sleep tHe nigHt tHrougH.
enougH of my raving, i'm going in bed to get my two Hours,i'm so tired.
nigHt all ! lol elaine

 

[me]

Elaine - sleep, i know i struggle with it. mostly because my mind won't shut off.

theresa - glad to hear you're feeling a bit more positive. it does make the same more worthwile when you're looking at the bright side. i finally remembered to check the name of the book i had mentioned. i definitely recommend it to anyone....the only thing better is carol!
"surviving your spouse's chronic illness" by chris mcgonigle, ph.d

karen - isn't love a wonderful thing. god bless you for being willing to stand by this man you love.

i'm doing fairly well. i'm ready for winter to be over but that's nothing new. we had a "beach party" at work yesterday. we played beach boys music, ate hot dogs and potatoe salad and decorated with summer things. it was a good mid-winter break. melissa

 

[TBear]

... now that's what i call denial! beach boys and summer stuff in -30 degree (c) winter is real denial! what can be next? carol in her red, stringed bikini? looking forward to the .jpeg!

t.

 

[rose]

I stumbled across this old thread, and thought it speaks volumes. I'm not sure what was going on with all of the capital "H"s, from some of what was discussed, I think there was a computer glitch during this same time. Its funny, I consider this an "old" thread, but yet, 5 years is not such a long time at all, until things change and we find ourselves here I guess.

 

[BarryG]

Interesting, especially when you consider that Al is the only person on this thread that is still here (or at least still active).