Time Lapse

One of my first photos, 1966 with my mother and older brother, Lee.
One of my first photos, 1966 with my mother and older brother, Lee.
My life today...
My life today…

Oh to be able to see a time lapse of your life! Recently, someone I knew from “my old hometown”, posted a video of a rose blooming in a time-lapse segment. Just a little over a minute long, I sat spell-bound as I watched. Here… lemme share a little spell-binding:

So consider yourself bound by a spell!

Erm…

Moving on…

When I think back over my life, I know that at no point did I foresee who I would be in 2014. I had no plans for a traumatic brain injury at the age of 6. I didn’t put down “late-deafened adult at 25” as a life goal. I never had a hint that I would deal with Meniere’s disease on a daily basis.

There are few things I desire in life. I feel blessed in what I have. However, if I had to explain a “main theme” on my “Bucket List”, I would have to say my heart’s desire is a slow build to real beauty. Just like the rose bush above in that my imagination could not capture what was to come AFTER TIME.

What I think is beautiful today is not at all what I thought was beautiful at 6 years old, 16 years old, or 46 years old. Outer beauty is fleeting and temporary. Outer beauty needs a number of “props” just to pass as beautiful. Things like make-up, proper lighting, staging, and other “props” that are not really a part of the person. Now that I’m 48, beauty is truly an inner kind of spark.

A friend of mine, Deborah, celebrates a birthday today. She is one of those “slow build to beauty” kind of people. The longer I know her, the more her beauty is revealed to me. She has a heart for people and a passion for making a difference.

Just Because You have Broken Parts, Doesn’t Mean You are BROKEN

Years ago when I decided to embrace who I was, life became easier. I stopped trying to hide how I dealt with challenges and decided that being REAL was much more nurturing for my inner Denise.

My ears don’t work without the aid of bionics. My balance causes me to fall – a lot. My most “frequent” view is staring at the sky while I “get a grip”. (Hey! At least this means I get outside a great deal!). I may have broken parts as a person with disabilities, but I am not broken.

Neither are you. Do you live with disability, chronic illness, or life-changing diagnosis? You may have broken parts but you are not broken. Some of the most courageous people I know are folks who live with challenges. If we could look at a time lapse of your life, what would it show?

Sure. We would get some indication of dealing with tough times. We would see wounds. We would also see numerous victories. I’m fairly certain we would see a slow build to beauty, however. It helps to take a step back and look at the big picture from time to time. After all, living with challenges can cause a person to get bogged down in “today” and just surviving. May each of us remember to review our time-lapse life and celebrate the beauty.

Denise Portis

© 2014 Personal Hearing Loss Journal

But it’s Sunny TODAY!

Have you ever found yourself slightly anxious and a bit unsettled, simply because you were not able to focus on today? Lately, I have experienced insomnia in part, because I have been focusing on two things while trying to go to sleep:

1. The PAST. I keep trying to think of a way to get even with someone who hurt a person I really care about, only murder requires prison time and doing so would only re-open old wounds. Why is it so hard for me to leave this with God? He can take care of it better than I can, yet I continue to brain storm about ways I might be able to “help”. (rolls eyes at own stupidity).

2. The FUTURE. I will be very close to being finished with my MS at the end of this year. Then what? What do I want to do with the rest of my life? Because… I mean – that HAS TO BE DECIDED TONIGHT! (rolls eyes at my own stupidity).

I’ve been trying to learn to re-focus on TODAY. So much can be missed in today, can’t it? Sure… it is important to learn from your past and to make plans for the future. Yet, I seem to really get bogged down in this mental exercise instead of actually accomplishing something good. In the process I lose… TODAY.

Last night, after kicking the 427,698 th sheep to the curb…

(Hey! I started out counting and patting the head of each that went by… but after an hour, I GET CRANKY!)

…I was reminded of a conversation I had with Sean at a TBI summer camp in 1999.

Today

I was an active member of the Brain Injury Association of North Carolina for a number of years, and my family and I enjoyed helping out at the TBI camp outside of Mayodan each summer. I had my first hearing aid and was already experiencing fairly severe vertigo with balance problems. I had not yet been diagnosed with Meniere’s disease, and I had not yet put together that for ME… rain made my symptoms worse. All I really understood was that when it was rainy, the “ringing in my head” (tinnitus) would get worse and I seemed to fall a great deal. I hated the rain. I was sitting in one of the shelters near the craft hut talking to Sean. Sean was in his early 20’s and had suffered a TBI in a pedestrian vs. car accident. Perhaps I felt some camaraderie with this young man as I had experienced the same kind of accident as a child. However, while I had almost fully recovered from my own accident, Sean was in a wheelchair and had only limited use of his arms and hands. Sean lacked the fine motor skills to participate in some of activities at camp, and because he hated those feelings of frustration and helplessness, chose instead to “talk the ears off anyone who would listen”. I was often that set of ears, (which if you think about my worsening hearing – this was a bit of a hoot!). However, I had learned already to pay attention and carefully ask questions if I did miss something.

Sean reached out and playfully punched my arm to get my attention. (Waving in my line of sight would topple him from his wheelchair, so we had agreed this worked better!) “It is a beautiful, sunny day today!”

I looked up at the cloudless sky and countered, “Yeah, but it is suppose to rain tomorrow. I think it is suppose to rain the next day too! I hate rain!”

Sean looked puzzled and repeated, “It’s suppose to rain tomorrow?”

I’m sure I looked particularly glum as I replied, “Yup! I’ll be falling all over the place! I don’t understand what it is about the rain… I hate it!”

We sat there a few minutes and I could tell that Sean was distracted by my response. I waited for him to gather his thoughts in order to reply.

Finally he said, “But… it is a beautiful, sunny day TODAY!”

I realized with sudden clarity what he was trying to explain. So what if it is suppose to rain TOMORROW! It is a beautiful, sunny day, TODAY.

Don’t Lose… TODAY

I really believe we can get so caught up in things that have already happened, that we fail to move on in our lives. I also think we can become so worried and anxious about tomorrow that we fail to live… today.

I am trying to remember that I only have today one time. My children are 19 and 20 years old, and my oldest is transferring to a four-year college this Fall. What opportunities am I missing each day to interact with them because I’m not focused on today?

How often do I pass a co-worker who looks like they could use a hug? How easy is it to ignore an opportunity to respond to a classmate’s venting about their problems and “get down to business” instead? A funny thing can happen when you become “TODAY focused”. You notice the cashier who needs a smile and small talk at the super Wal-mart. You stop to chat for a moment with the “old timer” that you always meet on your evening walk. You email the person you promised to pray for to see how things are going. You take the 15 seconds required to comment on a FaceBook friend’s wall. You call your significant other during the day, “just because”. You jot a friendly note to your landlord when you pay your rent… on time.

Today is gone so soon. Yet it is 24 hours of opportunities afforded to you alone. Those moments in time and opportunities to make a difference are yours. Yeah… the forecast may be pretty dismal. But it’s sunny TODAY.

Matthew 6:25-32

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O, you of little faith? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all.

Denise Portis

© 2010 Personal Hearing Loss Journal

It Takes Just One Voice

DSC031201

My “morning chore” this morning included cleaning up the porch and putting patio furniture up for the season. Each Autumn I accomplish this task, I’m reminded how desperately our deck needs replaced. I haven’t been out on the deck in about a week and was startled to find more Zinnias in full bloom. Don’t they know it’s late October? Most had died and I thought part of my morning chore for this designated “deck clean-up” morning was going to be to shut the flower pots down for the year. I just couldn’t do it… not with brand new Zinnias raising their beautiful colorful heads to celebrate this Fall Fashion Show going on in mid-Maryland right now!

I explained to Chloe how surprised I was to see brand new blooms on the Zinnias. Patient dog that she is she listened attentively, but I could tell she didn’t really understand what all the excitement was about! But you see? The Zinnias were not finished…

Disabled and finished?

This week I received a tearful email from a fellow HLAA (Hearing Loss Association of America) member. She was upset about the state of her local chapter. It seems they are having trouble attracting new members and the old members are rarely participating. They are SPECTATORS, but not PARTICIPATORS. A peer mentor at one of the local hospitals that performs cochlear implants for people in our area, she explained to me that she cannot even generate any interest in those relatively new to hearing loss.

“You can see that the word ‘disability’ has sunk into their very soul, impacting the way they choose to live their lives,” she explained. “I try to explain to them that hearing again through a cochlear implant is something to be celebrated! It is not normal, perfect hearing, but it is hearing and choosing to stay involved in the hearing world in which they were a part! If you talk to them you can tell they are depressed, defeated, and ACTING disabled. It’s as if all the color has gone out of their lives.”

I thought about my own support group and local chapter of HLAA. There are a handful of people who volunteer for everything, work hard at making sure the chapter is well run, make it a priority to attend each month, and reach out to other members who are on the ‘roll’.

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These folks stand out. They smile, are involved in numerous OTHER community endeavors, love people, make a difference… they are colorful. In spite of their hearing loss, deafness, communication needs and problems, they are noticeable because of their focus on ABILITY instead of DISABILITY.

dAp

Fidos For Freedom participates in dAp programs throughout Maryland. Chloe and I have been to two of these early on in our training together. The disABILITY Awareness Program was started in the late 1970’s. The intent of dAp is to educate children and their teachers about disabilities, what it’s like to be a person with a disability, and to increase acceptance of people who may be ‘different’. I’m given the opportunity to talk about what I CAN do. Fidos For Freedom has been instrumental in helping me to be independent again. I have learned so much about what it means to live “in spite of” a disability. There are so many different disabilities represented in our client family. For many, being partnered with a canine partner helps them focus on the “can do” instead of what they cannot. Many enter the training program at Fidos pretty much beaten down by the fact that their life is now completely different because of a disability. They finish their training in full bloom. They stand out and make a difference. Their independence grants them the courage to re-take their life.

One Voice

I love people with disabilities. Near and dear to my heart are populations with hearing loss, deafness, Meniere’s disease and brain injury. I belong to these populations. I wrote back to my friend this week and tried to encourage her. Many small chapters of organizations like HLAA have to make the decision to perhaps only meet quarterly instead of monthly. What you can’t do is “close shop”. If you make a difference in ONE person each year, is that not important?

Do you feel alone? Ever feel as if you are carrying the load alone and GEE HAS IT BECOME HEAVY? You may be one voice. Are you caring for an elderly parent who has Alzheimer’s? Are you a stay-at-home mom with three little ones under 5-years-old and no one at home SPEAKS ADULT? Do you work with people with addictions, and feel your heart breaking every time someone returns to their drugs or alcohol? Do you love someone with TBI who will never be the same person they were prior to their accident? Do you or a loved one live with a terminal illness?

You can remain in FULL BLOOM … in spite of it being late October. You can be ONE VOICE that makes a difference. An amazing thing can happen to ONE VOICE that remains in full bloom in spite of the season. It may take time and a lot of effort. It may not even happen in your lifetime. But one voice is usually joined by another… and then Another… and ANOTHER. You may never discover your own influence this side of Heaven. Be influential anyway. Stay in full bloom. Be one voice… one that makes a difference. If your life is all that is changed, is that a bad thing?

Some of you may cringe. I love Barry Manilow. (Sue me!) My older brother got me hooked on him in the late 70’s. This is a short song, but I ask you to listen to it and think about it from the point of view of making a difference.

Denise Portis

© 2009 Hearing Loss Journal