There is no "normal" for me. Acceptance of that statement/fact is huge for me, and it puts me in a new space that requires constant review and challenges. I struggle to develop a better mental toughness most days, that is required to bring me out of a place and space where I often drift to in my hearing and balanced challenged world.
In the past eighteen months I have lost much: Hearing, balance, a beloved family pet, and my spouse of 19 years. But I have gained much in that time. Managing my expectations of a new life, is the challenge and the new reality of my this new space that I occupy in the universe.
I recently read a quote by Michael J. Fox, the Canadian actor who lives daily with the quirks and jerks of Parkinson's disease.
"I may be different from other people, but someone told me that the growth of happiness is in direct proportion to your acceptance, and in inverse proportion to our expectation"
This was an epiphany of sorts to be sure. I read it, and re read it until it struck me as why there are days that I get mired or stuck in the "why can't I just be normal".
I have what I have, and my cochlear challenged world is what it is.
I will never get hearing back as it existed pre-1997. So once I grip that fact, I can move forward to deal with life as it exists now. Which more often than not is hearing at a 80% level of comprehension in quiet situations, filling in the rest with good guesses; and hearing at a sub 50% level in noisy environments, and playing a huge, but oft-times hilarious guessing game.
"Are they not bastards? " I heard from a friend last night with my processor and mic on the opposite side of the speaker.
"Huh? No, no, they are good people" I responded, "not bastards"
"No, no, Baptists, not bastards" they corrected.
I can and do laugh at the daily frustrations of what I "get", but what I "miss" is the source of frustrations. Phones are still a nightmare, for me and for the callers I suspect. Some calls that should be around a minute or two in length are five minutes in qualifying the caller.
"I'm sorry who are you asking for"
"Who are you again"?
"Are you with a company"?
"I'm sorry I am hearing challenged, can you tell me the subject of your call"?
"One more time, is it David or Dan you are looking for?"
"Oh hi Mom, sorry"
Confidence at times slips out of my persona like warm air through a open door. I go through the "this sucks, and I am alone now to deal with it" daily. Yet there are times, where I give thanks to this technology and marvel at the implants and what they provide in sound for this deaf as box of cereal boy.
Michael J. Fox hit a spot in his challenges and said "This sucks, this is what it is and this sucks, and then you move on from there"
While I am in that spot or space, I still ask myself if the universe decided to play a cosmic joke, or a God of my understanding decided that life was too easy, and needed to put me through a cosmic test, and took away some powerful things, and people in my life, to see how I deal with life without the love and understanding of some people, and the necessities of normal hearing and balance.
If I accept this as my new spot here, and accept that even that is ever changing, then I can start to deal with life from a better vantage point. I have what I have. End of story. Move forward now.
Yoga and meditation keeps me grounded and provides a "jumping off" point for the day. Deep and slow double breaths remind me that I have life. The slow process of air entering my lungs and slowly filling into the belly, gives me hope and is a reminder that 18 months ago I fought survival in a coma on life support. Written off and family gathered around, I somehow was given a chance at a comeback. But hearing would be the cost of this battle.
In my silence I changed of course, and saw the world through vision and touch.
Eyes became my ears, and a new vision of life emerged.
A gentler kinder vision as I needed compassion and understanding to survive in the dog eat dog environment, so I best learn how to give compassion and understanding if I was to receive it.
So the metamorphosis of David began in a hospital bed, but continues daily.
I lower my expectations of what I can and cannot do now in life, and I learn acceptance of my new life without important things and people in my life. So much I shared with people that no longer grace my world, go unshared. So be it. It changes not the fact that they exist with or without what or who I have or do not have at this point in my life.
Michael J. Fox has a small square painting hanging on his office wall. Just black text on a white background that immortalizes an expression Fox, a former heavy drinker, used as he was trying to quit and accept Parkinson's disease.
It reads: "fuck it and breathe."
This morning as a beautiful sun rose, and I stood in full Tree Pose attempting ujjayi breaths, I drifted to that spot that dogs me. The confidence escaping me as I dreaded the Monday morning dealings with the phone at work and the frustration that comes with it.
Life became calm and clear when I removed any and all expectations and stopped reacting. As radical and unfamiliar as this was, it calmed me, and my attention shifted inwards.
I have what I have.
I am what I am.
Now fuck it and just breathe David.
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28 comments:
Thank you for this post, David. That quote from Michael J. Fox about the growth of happiness is the best ever. And I really must take your advice to lower expectations of what I can and cannot do at this point in my life. As I grow older and my health fails, it is so hard to accept that I cannot do what I have been used to doing each day. You have learned life's lessons well.
I'm happy that you are beginning to approach your life as so many of us have with ours.
'Sufficient unto the day' can be defined in many ways and you have discovered one of them. Good post.
Hi Dave,
I can totally empathise with this post! I often think of you as I had a very similar 56 days in hospital battling for life, raging high fevers, seizures, endocarditus (heart infection) and septicemia, then rapid, total and permanent hearing loss as a result of the ototoxic antiobiotics. But at the same time so lucky, my precious of 21 years has stood by me in every experience, and my pet bichon knows I'm deaf and often becomes my ears when I'm home by myself.
like you I'm on my third implant. Second on one side lasted just 8 months then electrified my face, neck and brain until finally it got an electrical short and failed. Why, why,why? Tinnitus is so loud I think I can feel my head vibrate, then comes raging headaches, and out of control vertigo, like you, .............why? Some days it scares me that much I think, no more, I just can't continue, ............why?
Patience, Ive learn't that, not once since that devastating time in 2007, but 10,20 maybe more times. So I guess I haven't learn't it at all..........why? My wife Carmen has gently told and retold me that 'in acceptance lieth peace' I'm still learning that too.
I have had quite a bit of success with using a personal FM transmitter /magnetic induction neck loop. I set my prcessor to T-Coil setting and then fine tune with volume and sensitivity on my processor and the controls on the neck loop as well. I can eat in a noisy cafe' and understand every word Carmen says without need for visual cues (mostly) and the FM coupled with my processor filters out all the unwanted noise pollution. The system can be used in meetings and in vehicles etc. Check my last post on my blog as I have links to the FM site etc. I just thought this mat be helpful to you. Good luck,
Cheering you on,
Colin
Michael J Fox is great. I give him a lot of credit for continuing to do tv interviews. A lot of celebs won't let themselves be seen when they're anything less than what they view as perfect.
You always shed a new light on life for me, David, and this post is no exception. I thank you as I do for all of your posts. Thank you for the Micahel Fox quote because it's wisdom we can all use. Like Bobbie, I sometimes have trouble accepting growing older, and the normal aches and pains and frustrations and they don't even come close to what you have to deal with every day -- not to mention what had to be the agonizing loss of Janet, of her love and support that helped you get through each day. I read your posts and realize how easy it is to become a total wimp and whine broad. And that's when I will remember this -- fuck it and breathe, Sylvia. Thank you as always for the wisdom you pass on to the rest of us.
All I can say is David your writing just blows me away. I think because this could be anyone reading it and it could happen to anyone.
Yesterday a friend reminded me to *Just breathe* In that I thought of Michael J Fox and Christoper Reeves and how their candor of speaking out for so many who are challenged. I hate the word disability. Although I to know it well in different ways. I just think in time we take small little seconds of acceptance and realize *It is what it is!*
I think no matter what we all want to be normal. What is that anyways?? I m not who I was before cancer and radiation to the head. So many changes came with it. Now years later it was one of the most empowering but life altering things that ever happened to me.
Each challenge your right it is what it is. I also have to work daily to keep myself up..Change suck specially those that are life altering. I always wonder why but then I move on cause God had His will. And why we will never ever know.
Metamorphosis You have gone through so much change that its boggles the mind. But what I see is someone who should be allowed to say *f it and breathe*
I needed to read this today, its a struggle lately on so many levels. Your post really helped me,on many levels to understand we are not alone in the struggles.
Just Breathe
Such a thought provoking post! I have become masterful at adjusting my expectations for Mac Daddy and it has made me feel much happier. There's some serious truth to that. I haven't ever put it to the test with myself and I suspect it may be a little harder when you apply to yourself directly, but you can do anything you set your mind to doing the way I see it. I love Michael J. Fox! We have a highway named after him near our house and from now on when I see it I'll say "fuck it and breathe" to myself. Keep on keeping on you fine fellow.
You're last line says it all. I decided 30 years ago that handicap be damned; I was going to keep on keeping on. That attitude got me a better recovery than the docs predicted and taught me what a survivor I am. I also learned that it's okay to get frustrated and/or upset with the whole mess as long as it doesn't go on too long.
There's a small sign on my bathroom mirror that reads: Today I choose to be happy. I made it many years ago in the midst of a dark night of the soul. Sometimes it's an easy choice; sometimes it's impossible but it IS a choice and my sign is a my morning reminder to suck it up and on with my life.
You are blessed that you have yoga to aid you. I'm sure it keeps you centered and positive as you go through this difficult time.
That is good advice for everyone.
Hi David,
For the phone it would be great if you could get something like Captel... but I'm not sure it's available in Canada. Abbie blogged about that last year: http://contradica.blogspot.com/2008/03/petition-canada-for-captel-and-vrs.html
That MJF quote about happiness being in inverse proportion to expectation is excellent... (And how amazing that Colin has experienced many of the challenges you have. Pretty amazing that someone can truly empathize with your hearing loss experience...)
David, this is a beautiful post. I am so sorry about Janet. My heart goes out to you and guitar boy.
Ironic that I wrote about Michael J. Fox just the other day. He seems to touch a lot of folks. You help countless people with your attitude about your disability. It sure helps me put my "issues" into prospective. Thanks, I surely enjoy your writing.
As always, thank you for touching me with your words. You continue to inspire me, just as Michael J. Fox does...his quotes are great. I love all of this post but my favorite is your last line. Peace my friend, Lori
I yam what I yam, as Popeye said.
I add to your statement, and you are special.
I'm so glad you survived so your sweet son wasn't left an orphan at 15.
~a
"I may be different from other people, but someone told me that the growth of happiness is in direct proportion to your acceptance, and in inverse proportion to our expectation."
Having lived with hearing loss for such a long time, I realize I've incorporated Michael J Fox's philosophy without ever putting it into words. Does that make sense? I don't go into any situation expecting to hear anymore, but I've been living with hearing loss most my life.
Yeah-- it sucks.
I am learning to live in the moment.
You've had it particularly rough these past couple years. Thanks for writing such a poignant post.
You, my friend, are an inspiration to all of us.
Just breathing here, too, as I adjust to an ever-changing new "normal."
I love the ujjayi breath and tree pose, what a lovely combination. The calming of the breath and the rooting down and growing at the same time in tree pose. Really mirrors what you are doing in your life.
I can't imagine the challenges you face every day and I'm continually amazed by your attitude and determination to stay positive.
I've always wanted to be "normal" (whatever that was) and realized in the last few years that I am just the person I am and trying to be "normal" is impossible as there really is no normal.
I'm so glad you made it out of that medical crisis. Your writing means so much to many people, including me.
Namaste.
Coming here, I always learn something, or feel something, differently than I get from other blogs. You help me remember to cherish the simple times and never to take things for granted.
I love the idea about the growth of happiness. You, like Michael J., are an inspiration - even though I doubt that's your intention. Thanks for being here.
Yoga and breathing and being still are also ways I try to calm my raging inner thoughts and feelings of helplessness. And the blessing is--it works!
"Fuck it and breathe." That is so much better than my usual way of reacting to stress, grief and loss, "I am f_ _cked and I can't breath." You, Dave, constantly amaze me with your strength, resilience, and amazing attitude.
I think I am going to adapt this as my new motto....sometimes I get too caught up in the drama of daily life..things that in the grand scheme...don't matter one lick. I sweat the small stuff way too often..I didn't used to, I blame city life for that, but this will be my motto to return to my previous state...just fuck it and breathe...
great post!
Stacie
I like that, I might adopt it as my new motto as well...
Your post always leave me with tears in my eyes, but strangly uplifted
That's a great motto.
I love this post. I sometimes have the same thoughts about why I suddenly developed asthma. I think MJF was right about expectation and acceptance. But sometimes these midlife changes are easy to accept in the moment but they wear after days and weeks and years. It is an effort to keep your perspective and happiness moving with you each day!
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Excellent post - the attitude doesn't give back all you lost, and if fact still allows you grief and incomprehension - but it also allows you to take a deep breath and walk forward.
Thank you - again. And darn it, learning Yoga is still on my list - I know its been there for years but maybe all I need is the FIAB attitude and stop pussyfooting!
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