Encyclopedia of Me - "C"
I have only two fears that cause me to pause in my battle against ALS. The first is the decision to go on a breathing machine or not. The second fear is the inability to communicate. My fear is that I will not be able to say something hurts, that I need to use the bathroom or what I'd like to eat. Every decision will be made for me and I will lose control over my daily life.
I've been slurring my speech for at least 12yrs because my tongue muscles are shrinking. When I use the phone to check on bills or repairs many people are rude, thinking I'm drunk or high. My slur has progressed, but if I'm chatting face to face and you know I slur there is no problem. Over the phone it gets more difficult but like I said if you know, it's easier because my friends listen harder. People are not always good listeners because they are thinking more about what they are going to say next. The only time I get irritated is when people pretend they understood what I said when they didn't. I'd rather be asked "say that again?" because it validates that someone cares what I'm saying.
I must confess I get down right pissy if Dave or my girl's pretend or ask "what?" when I know I was clear. They are around me so often they understand me really well and even act as interpreters in public. If I get a "what?" I repeat it loudly with attitude. I know it's not right but I hate "selective hearing" from those who understand me. Some men and children have perfected this technique in families. It's my biggest fear that what if the people closest to me stop understanding me and what will happen to my life. Will I be ignored or will they pretend to understand my body language? Get frustrated and leave my control to a caregiver of their choosing? These are unrealistic fears because I have Dave, but he is human and has limits. Being a caregiver and caregiver coordinator is a daunting task. Dave is my rock and loves me but he can't do it alone.
I'm communicating like crazy, right now, so my body language and preferences are known by heart. I will never give my power away and if I did I would no longer exist. My eye's have been my parenting tool and love speakers for years, so I pray they will continue to communicate for me. We all could listen and communicate better with loved ones, including me, right now. I still can't communicate with my dad or tell my brother I love him. They would get very uncomfortable. If we say what we feel to those we love instead of surface conversations things would get real and hurts healed. TK thinks his real name is "Gramy Loves You TK" because I say it over and over just in case he gets older and never hears the words.
20 comments:
I can't imagine what a difficult decision this must be. I have had to make hard decisions too, nothing like this, but hard where I had felt like I was the only one in the world to have to face it or deal with it.
I also had to sadly think to myself how often I have pretended to understand someone when I didn't. I always thought that is what they would want me to do. Thanks for setting me straight on that.
Your blog and your spirit are lovely!
You say more than most people ever will, Tammy, and I believe that somehow, you'll continue to do that. You are one amazing warrior, for sure.
Judi
p.s. - I love that TK thinks his full name is "Gramy loves you TK"...that is WONDERFUL.
Thank you for writing this post ... these are difficult decisions to make.
Communication is really, in the end, what truly matters. It seems to me that you have done an amazing job of letting the people in your life know how you are feeling... your eyes will continue to communicate your feelings.
And what you say is so true - if everyone was able to say what they feel, what a different place this would be.
TK is lucky to have you as a grandmother!
It's funny you bring this topic up because we were just discussing something similar in my Diversity in Education class. We were talking about prejudice and I admitted that the hardest thing for me to overcome has been the way people communicate. If they cannot speak clearly or well, my mind shifts into this whole "boy are they stupid mode" when I know from experience that there are a hundred other things that come into play in the big picture of how people communicate. Maybe I'll just send all my classmates to your blog! LOL
You have your words, the ones you so beautifully articulate right here, that speak your truth. Thank you for sharing your fears, Tammy. By doing so, you empower yourself ... communication is a two-way street and it is my belief that you will continue to give and receive the words, thoughts, and emotions with those in your circle (and extended circle!) Love and peace to you, xx, JP/deb
Communication is key to everything, be it a word or a glance. Sometimes familiarity dulls our responses or how we listen and it's something we all need to work on because there is nothing worse than feeling ignored. For those of us who fear the loss of our communication capabilities, this is a huge issue. Not only should we never give our power away, we should fight like hell to keep anyone from taking it.
Rock on, sweetie,
Love you!
I know too that this is so difficult for you.. What I can tell you is that I sympathize .. and am sending hugs.
I really like that you express your thoughts so freely. I enjoy reading them.
Take care.
p.s. I did it!! I put the music code on my blog - and I have a Terrific choice today -- you must come see :)
"Selective hearing" - oh how well I know this ;-)
The eyes truly are the windows to the soul; there is so much we can communicated with a look. For most of us, our subconscious automatically pairs the proper look with the words we say as a result of a lifetime of practice. I can see that the "language of the eyes" is of paramount importance as your verbal skills change.
So many decisions to make. But I'm confident that you'll make the right ones for you. Your heart definitely made the right decision when it chose Dave, and that one decision will serve you well as you come upon the crossroads ahead.
Wishing you love, Tammy! xoxo Star
i may not know a lot but i do know this, our family always understood my sister, her eyes and facial expressions spoke beyond the words of the english language ... her body language communicated a world of conversation though her tongue would not allow words to flow like an episode of gilour girls. i know that i miss our talks so very much ...
i don't understand selective hearing because i grew up in an environment where hearing meant more than listening with your ears and i know that your family will always hear you, how could they not when i know you must speak so beautifully because you communicate so beautifully here ... warm hugs ...
This IS really interesting... that you posted this the same day Glenda posted on my blog.
It makes me really pause to think of how many times I've pretended to understand others, feeling like my lack of understanding was showing everyone how bad my hearing is... (i always had to be tested twice in school, to see if I needed hearing aids of not... so close to the cut-off.)
I've learned so much from reading your blog post and Glenda's interview... Thanks for sharing.
Tammy, it seems you have learnt to communicate in all the ways that count. The wisdom in this post is really deep, and you inspire me with your courage in facing the questions that most of us would blanch at.
I can't help but think that these written words are someday going to help another person going through this. You are truly a warrior, Tammy--and I respect you beyond words.
Communication is like life's blood. There is something about instinctive listening too - it takes a willingness to slow down and listen with the heart I guess. You are teaching your family to do that. Very wise.
Another piece of great writing, friend. What would I do without you?
TK thinks his real name is "Gramy Loves You TK" because I say it over and over...
This is beautiful and He will never forget.
Your fears are valid and heartbreaking Tam. I pray you won't have to face these. As far as people pretending they know what you're saying... I get that a lot too, Why can't we all be better listeners. This was a moving post as usual.
( I've been so frustrated that my computer usually shuts me down on your site.) xox cyber hugs to you buddy.
Tammy, I think you and Dave and your family, are amazing. And I hope you can find ways to continue to communicate, because you are one of the most inspiring people I know - you have so much heart, courage, and wisdom to impart. Have you looked into assistive technology communication devices? There are some out there now, that can do some absolutely amazing things now, with very little muscle movement. Perhaps you might even be able to persuade a manufacturer to let you be a spokesperson for their product through your blogging?...just an idea I though I'd throw out there.
Many, many (((HUGS))) to you, as you face these tough decisions.
XOXO
Tammela,
It's so different to be reading a post like this from you. It's similar to others in that it's your usual raw, honest, and open expression. But it's sad in that it expresses such a deep reality for you.
It just makes me love you all that much more to be a part of your struggles....
Nance (smooches to you)
"My eyes have been my parenting tool and love speakers for years" mine too!!! I love this line! Hopefully you will still communicate with your eyes; my mom did when she was aphasiac!
My dearest friend's grand daughter thinks her name is “Grandmas beautiful Girl" so funny these commonalities amongst loving grandmas. She is a funky young grandma like you too! You are such an inspirations and always give me food for thought~
Hugs my friend and let’s hope is later rather than sooner that you must think of these things. Oh, and my kids say I have selective hearing….but honestly my hearing is better some days than others. I am deaf in my left ear, so it can depend on how I’m facing, the pitch, other noise distractions and also the audio processing which can be rough on a bad day!
Love to you Sherrie
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