Monday, March 16, 2009

Getting Back Up

I cannot believe I am still struggling with accepting the fact that I have Spasmodic Dysphonia. I was diagnosed over three years ago. I have had times when I've had the right attitude and I thought that it would get easier as time goes on. But it hasn't. It has gotten harder. I don't want this.

I've been avoiding other SD blogs. I've not gone to the SD message boards in I don't know how long. I ignore all the new topic alerts for Voice Matters. I delete the e-mails from the support group in Denver without reading them. I don't want this!

Why does it have to be such an inner fight? Why can't I just accept it and move on?

Somehow I've allowed a cynicism to develop that was not part of who I was before. I don't want to be like that. The person I was before is not the person I've allowed myself to become. My mind is filled with, "I used to..." and "I can't."

On top of that is my feelings of failure as a mother. I know that my children are their own people with minds and wills of their own. I know that you can lead a horse to water but you cannot make him drink. But... in my heart I still grieve. I still spend so much time rethinking every choice I made and wallowing in regret.

I thought I was a better person, a stronger person.

My life as it is currently is not what I want. It is not even remotely what I thought my life would be. My kids are not bad kids. They could certainly be far worse. My husband is a good man and we have a very good relationship, one we fought for. Last week I was complaining again about how invisible I am in certain situations and how hard it is to be among groups of people and yet totally alone. He told me later that he thought, "My God... I cannot die before her." It startled me because I don't know what I would do if he did. He's my life line. When we are in places where I can't be heard I just have to look into his eyes, say some of the words and then he talks for me. He tells me often that it makes him sad that I'm so sad. I get so wrapped up in what it is like for me that I don't even think about what it is like for my family. They've lost something too.

I think about myself far more than I think about anything or anyone else. I do. If it is not about how much I hate SD it is about other things like thinking about losing weight while eating cookies or staring at the beginnings of my turkey waddle neck and thinning hair.

I haven't even gone to church in weeks. I just sit there and think about how I can't even sing along or talk to anyone because the sanctuary is too loud. I listen to the teaching and think, "I already know this."

I've tried to make the shift to thinking about what I can do instead of what I can't do. There have been periods of time when I felt like I was still useful and had something to offer... I just haven't been able to sustain it.

I sometimes follow adoption blogs. There was a time when we thought we were going to adopt. It's been a hard thing for me to let go even though I rarely speak of it. We had our kids young and we are nearly done with the active part of parenting children. I thought I'd be involved in a ministry to children of some sort. I've been home alone during the day except during the summer for 18 months now. It sucks. What will it be like when our son leaves for college? Well... actually, our mornings with him are so rotten that I sometimes think it will be really nice. The thought of being home alone while my husband works for the next 25 years freaks me out.

Trisha is a former teacher with SD. She's currently taking sign language classes at a college. I thought about taking sign language before but it seemed pointless since no one I know can understand it. I've been thinking though that my family would probably pick up on it if I signed while saying what I was signing. I'm also thinking that maybe I could work with deaf children...

I've been thinking a lot. I'm going to get up, dust myself off and try again.

19 comments:

Two Dogs said...

Uh, not to point out the obvious, but get back up from what? We have challenges in life, being able to speak clearly is minor, really. It might be frustrating some times, but it is definitely for a purpose.

God is telling you that you are missing a tool in your kit. Find that tool.

Chris H said...

I can't imagine not being able to talk clearly.... no idea at all how frustrating/limiting it is for you or others with SD... but I do know that as far as I know every other part of you works just fine... so try to focus on the positives of what you can do... and start from there!
YOu need to think about what YOU WANT to do with the rest of your life ... working AROUND SD.. not because of it... and do something that you love.....
Stop trying to disect where you went 'wrong' with your kids.. YOU DIDN'T go wrong anywhere, they have free will and their own personalities, nothing we do will change that or their friggin choices in life.....
Choose to be happy... choose to do something positive ... choose whatever the hell you want, as long as it makes you happy, and if it benefits others too... well all the better.
Lecture over and out.

FreckledFireLily said...

When I wallow in the imperfectness (is that even a word?) of my life I find that focusing on others helps. Volunteer in the church office, or at a food bank, rock babies in the nursery, participate in a walking fund raiser for a worthy charity... I have to do things that take my focus off of me. If I don't my life gets darker and more closed-in. I will pray for you.
Kathleen

Laura ~Peach~ said...

Well, Everyone before me is correct... I love what chris said about the kids (I needed to hear that too) You and I suffer from some of the same things... Too much time alone is one of them...Know that you are in my prayers and Of course the old sayings are oh so true... God does not bring us to it that he wont guide us through it... and, one thing that always works for me is to look around, really look around, then I realise just how blessed I truely am.
I am here anytime you want or need to talk, text, email ...
Love and hugssssss
Laura

Angela said...

((((((((((((hugs)))))))))) SIGH....Coffee, thanks so much for sharing your heart with us and being so honest. I'm just sitting here with my fingers on the keys,,and sighing away. Don't have words to inspire, nor encourage. I'll just sit with you instead, and when you stand and start dusting off,,I'll help. ((hugs))I love you precious one.

MaBunny said...

You still have a little bit of a voice, just like I have my feet - neither one is working well for us, but we have to deal with it. I know if I met you face to face I wouldn't judge you because you whispered to me, nor would you judge be for the braces on my legs...
/hugs to you , and you will feel better in time!

Coffee Bean said...

Two Dogs,

You are a straight shooter and say it how you see it. I appreciate that. Not being able to speak clearly is not as minor as you'd think. If I could stick you in my pocket and take you around my world for a couple days I would. At the same time... you are very right. There are much worse things. What I mean by getting back up is that I've allowed this limitation to push me down and I need to find a way to work around it and live a full life. Thanks for making me laugh with your Two Dog style.

Chris, Kathleen, Laura and Angela... Thank you for your sweet and wise words.

Chris, I can imagine you saying that in your fabulous New Zealand accent!

Coffee Bean said...

MaBunny! You were leaving your comment as I was leaving mine. Thanks! And,no, I would not judge you by your leg braces! LOL!

hanagrace said...

Funny how I know you better now that we're far apart! I love reading your blog. I haven't been blogging for a while... life is a little hectic right now. I'm sorry that life seems to be kicking your butt right now! I learned a little sign language in high school, I think you'd really enjoy it! And if you worked with deaf children, at least then there wouldn't even be any questions about your voice at all! :-) It sounds pretty cool to me! Keep exploring your options, you'll find something! :-)

Just Me said...

Funny, as I read your post, I was going to suggest learning ASL when you mentioned it yourself.

I can imagine feeling somewhat nonexistent in social settings without the use of your voice. I thing working with the Deaf/HOH would be a great way for you to help others who are also separated from the speaking world.

As frustrating as it is for you to verbally contribute to the goings on of conversation, at least you can understand them.

If you desire working with children, how about a one-on-one tutoring or literacy program? I don't know how well you can be heard in that setting, but with an older child you might be able to write more and speak less.

With or without learning ASL, Big Brothers/Big Sisters might be a good place to volunteer as well.

But, yes, spending the next umpteen years at home alone while Mr. M is at work is NOT the way to go. There are people and organizations out there who would appreciate your talents.

Karen Deborah said...

Coffee Beaner that negative thinkin is stinkin and it'll kill you off. You can't talk out loud very well, ok it's a drag. BUT now what?
What CAN you do? What DO you do?
start with thanking God as out loud as you can even if it is a teeeny weeny whisper. This IS important. your enemy can not read your mind but he can hear you. Praising is a cure. I am not being GLIB I learned this while suffering acutely personally and over a long period of time. These thoughts will spiral you down into a pit of despair that no type of Prozac will be able to reach.
Look at those who have it worse than you do, look at what you are able to do. LOOK at HIM who is able to KEEP. LOOK UP!

Andy and Wendy Ingram said...

You are in the midst of grieving the loss of your voice right now, so I think by communicating about your denial and feelings and frustrations, it will help you be able to eventually take steps forward. I am so glad to support you and pray for you on those tough days, like today, when you need to just vent about where you are and the loss of voice you are dealing with every day. I hear humility and brokennes as God is stripping away your voice that you have had your whole life, and all your emotions and feelings are so understandable. When God took my health for awhile, for months I greived that loss of normalcy and grieved the good health that I had my whole life. It is humbling when you go through it and I felt like some people really did not understand. It was a time of brokenness that is very difficult to even explain to others that have not lost somehting related to their health.
I believe God is going to create some amazing opportunities for you Coffee, to love people without your voice. That great love and care for people cannot be taken from you coffeebean, even though you may not be able to use your words, you can show them in greater ways by being there for them and listening. I learned recently in my Stephens training that a quiet presence is so much more valued to people who are suffering, grieving, etc. than someone who knows all the answers and speaks too much. When people are going through difficulties the most important thing is to have someone to listen to them and offer their silent presence. I could see you offering this quiet precious presence to people that are hurting or maybe it will be working in the area of deaf education. God will direct you! I know you are very bright, so have no doubt that you could do anything you put your mind too. Keep talking to God about your dreams, and I want to encourage you to keep dreaming and pursue those, whether that is learning sign language or something else that God has put on your heart. The world needs less talking, and more people that can sit and listen to others. I believe God is transforming you into beautiful ways in the midst of all this pain of dealing with the SD, to become something you never would have created yourself. God does bring beuaty from ashes and I think in time this is what he will do for you. He may not redeem your voice physically, but I could see him redeeming this in ways that could make such a dfference in the lives of others who need a loving presence. I know I promised to not give pat answers, but as I have been praying for you, I really believe deeply that 'his ways are higher than ours, and his thoughts are higher than ours". I have been praying specifically that God would direct you so clearly in a way that would lift you up and also bring glory to God in ways that you cannot even imagaine. Keep being honest during this time and God will direct your steps and show you how he wants to use you to bring glory to himelf.
Sorry for all the pat answers tonight! Praying for you....
Wendy

Trisha said...

Love you lots! I wish there was a way that I could take SD away but we both know that isn't going to happen.

Those darn self-confidence thugs are on a spree again, aren't they?

Anonymous said...

I feel your pain and loneliness. I just want to say I read your blog a lot but do not comment. Reading blogs is what I do at night before I go to bed. It fills some time and helps with the loneliness. It is just me and the dog here now. I lost my husband of 39 years on new years eve to lung cancer. I, like you feel like a ship without a sail and wonder what to do with the rest of my life? My kids are all grown and have their own lives.I have severe health problems and can't do the things I used to do and still want to do.But, now that I am all alone I am trying to get my body in shape to do more each day.so, I bought a treadmill and have started working on it ...SLOWLY.Like 5 minutes at a time! Today I actually did 15 minutes ! I have lost about 30 pounds since last last August .I need to lose at least 50 more!I have copd and sleep apnea and sleep with a c-pap machine..It's the pits !I also have multi-joint arthritis and can't take meds for it . I live on a farm of 8 plus acres and wonder how in the &^$## am I going to take care of it all ?? I have 5 cows and 6 chickens that need attention daily .I don't even know how to drive the lawn mower !!But I am going to learn how !And if I can build my saggy body back up I want to volunteer at a nursing home to call Bingo games or something to make me feel like a real person again. You are younger than me and you can do it too !I own 2 race horses that are in training and running for a trainer (a woman) who is totally deaf.If she can overcome the obstacles..So can I !And she(Laura) is winning races !At least you still have your husband to help you so I know you can do this and be happy again.I wish you the best and will be checking back...I may not comment tho. lol Love and good luck...Doris

SheroSkyKnight said...

I'm sorry about any problems Chai Tea may be giving you, I promised you before she would finish and she will. If not now then later, but she will finish. I'll protect her with my life, but where she is right now is just... yikes. I suppose me and Chai Tea should learn sign language too? She'll probably beat me to it, I'll probably be slow in it and fumble the words ending up saying something awkward and embaressing. Don't worry about one thing though your kids definatly love ya, I know I speak for Chai Tea, she adores you!

jojo said...

Oh CB, I wish I had seen this post sooner..

my heart just aches for you. I have been and still am in the same sort of place as you. It has been so difficult for me to pick myself up, and the lonliness is unbearable.

I don't have any words of wisdom or any great solutions, I'm still trying to find the answers myself. Please know you are in my heart, my thoughts and prayers... you have my e-mail and if you want to 'talk' we can figure out a way...love you...

Anonymous said...

I have SD and still manage to teach. When the injections wear off, or when the injection doesn't help...I enter into the same depression that you describe. Try to think of things like writing a book (you do in your blog), tutoring one-on-one (in a quiet setting), or something online. The internet is so helpful, as is email for our condition. You are not alone!!
Faye

Flea said...

I talked with Trisha about the ASL classes. A friend locally has been diagnosed with Meniere's. She'll eventually be deaf. We're investigating ASL classes so we can talk to each other. We have a deaf church which meets in our facility.

Got me thinking about losing a precious sense - the opposite of a super power, really - and what I'd do. I'd hate to lose my sight. I think I'd much rather learn sign than Braille. Yet the women in my family tend to go blind. *sigh*

Glad to see you're pulling up and out. I think Wendy is right - you're still grieving a loss. Grieving something which isn't quite lost is harder than something which is GONE. I did that with my dad when our relationship died. It took years. He was still alive, so there was still hope. Kinda. Letting it go and having a burial ceremony was the best thing I ever did.

KatieCO said...

Well, I win the lousy friend award! You could come over here - we could have Sonic limeades, cuddle the kids... clean my bathroom?!? (haha)

I miss you.