I have met so many special people in my life. One of those special people is someone who has become one of my closest friends. Cara is a fellow client at Fidos For Freedom, Inc., where I trained and received my own assistance dog, Chloe. I rarely promote fundraisers on here so I hope you understand that when I do choose to share a story it is because it is for a very unique and special reason.
Cara first joined the Fidos For Freedom, Inc., family to train and be matched with a service dog to mitigate a chronic illness – Multiple Sclerosis. Since that match with her beloved, Tank, she has also been diagnosed with additional life-threatening illnesses. Cara doesn’t let “life” get in her way. She continues to volunteer for Special Olympics as her son enjoyed the activities. Justin (her son) passed away a couple of years ago, but she continues to stay active giving of her time and energy to this wonderful organization. Cara also often provides leadership in various roles at Fidos For Freedom, Inc., and encourages new clients as well as “veterans” like myself.
Cara’s current transportation is “beyond any mechanic’s ability to fix” and she is fast coming to the point where she will no longer be able to attend Special Olympics activities, or Fidos For Freedom activities and trainings. Cara is trying to raise money for the conversion of a used van to make it accessible for her use. Please read her story below and click on the links provided to read an in-depth biography of this incredible lady – as well as information about why she is raising money.
Imagine not being able to go out and hop in a car, call a taxi, etc., because you do not have transportation that can carry you, your wheelchair, service dog, and oxygen tanks. You become house bound and lose the ability to be involved with others and with life. Help us not let this happen to my friend, Cara.
This is not a scam. Would you consider donating even a small amount? More importantly, will you share this post with others and encourage them to donate small amounts as well? In a short time, people networking with other people, folks who CARE about others and reach out to help, will help Cara meet her goal to have reliable transportation so that she may continue the quality of life she enjoys. I hope you will consider helping – and sharing!
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Today I’m launching a fundraiser at http://tinyurl.com/AVanForCaraAndHerTanks. I usually don’t like asking for help, but find myself in the humbling position of needing to do that.
Due to my failing health, I am using my wheelchair a lot more often lately. The lift in my van is labor intensive and is becoming more difficult for me to use. In addition, my van is old and I’m concerned about it’s safety on the road. I drive myself to the hospital and to several specialists, almost once a week.
I am asking for your help in raising the funds I need to modify a used van with an automatic ramp, lower the floor, put in a kneeling system, etc. This will allow me to transfer to my chair safely from inside the van. I’ll be out of the elements, away from strangers, and out of the way of traffic.
Please visit my fundraising page at http://tinyurl.com/AVanForCaraAndHerTanks where I share my story and to find out how you can help. If you would also share this with your friends and family, it would help me greatly!
Thanks in advance for taking a look and helping if you can! Cara, service dog Tank, and O2 Tank, Jr 🙂
Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.
What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.
Hearing Loss Association of America
I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.
I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!
This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.
Fidos For Freedom, Inc.
At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.
I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.
Sometimes FAMILY are not “Family”
My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.
I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.
Look for – and BE – “Family”
If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.
Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html
Being “aware” is a natural state for me. I think anytime an individual loses one of their five senses, they learn to compensate by being more aware of things around them. When all five senses are working, input is sent to an individual’s brain about their environment, people around them, etc., to help them determine if any action should be taken. However, when a sense goes “missing” as the result of acquired disability, accident, or illness, individuals have to learn to compensate.
Now that I have Chloe (my hearing assistance/balance assist dog partner from Fidos For Freedom), I have changed from a hyper-vigilant state to simply being more aware of my surroundings. You see, now I depend on HER. If I’m watching my partner as I should, she hears and then sees things I often miss. I’ve learned to pay attention to her body language and cues, as well as visual focus and reactions to stimulus around us (such as a sudden, loud noise). Do you know my blood pressure has gone down since I’ve been matched with Chloe? Hypervigilance is a negative state of being.
Psychologists define hypervigilance as an enhanced state of sensory sensitivity coupled with an exaggerated intensity of behaviors in response to possible threats. Hypervigilance is often accompanied by a state of increased anxiety which can cause exhaustion. People who are hyper-vigilant often stay in an abnormal high state of arousal and respond to stimuli by constantly scanning and detecting possible threats. Individuals with PTSD (post-traumatic stress disorder) often exhibit hypervigilance. Why then would a person who loses a sense, struggle with hypervigilance? I do not believe that people with acquired disabilities start out being hyper-vigilant. I think it evolves after an individual experiences something very negative as a result of having lost a sense. For example, I do not remember the exact day and time – but I do know that in June of 2003, I was shopping in a retail store and was stunned by the reality of how dangerous being deaf can be. I was scanning the shelves for items and a person evidently needed by. I didn’t hear the “excuse me” or whatever was offered to let me know I was in the way. The woman pushed passed me fast and I ended up flat on my face on the floor. I rolled over and looked around to see her standing there indignant (and not at all apologetic) demanding, “Why didn’t you move?”
“I’m sorry – I’m deaf”, I replied. She had the good grace to at least blush, pushed her cart and hurried away. I was so shook up that I left my cart where it stood, gathered my things, and left. I vowed from that day forward that I would do everything in my power to make my invisible disability more visible. I went through a fairly stressful number of months after the incident and became hyper-vigilant whenever I left the house. I stayed in a state of exhaustion because of it. Enough time went by that I eventually learned to relax a little and just work at picking up good awareness habits. I wear my hair up so that the technology I use is visible. In 2005, I was implanted with a cochlear implant that served to reduce my tension even more since I re-gained the ability to hear. After I was matched with Chloe, “being aware” became even easier. In training, an oft repeated phrase we hear is, “Trust your dog”. In the beginning it is very difficult to do because we are not accustomed to doing so. It takes practice to eventually instill the HABIT of trusting our dogs.
I got a lot of flack this last fall from extended family members for taking my dog to the hospital with me when my daughter had emergency surgery. My family members who do not live with me do not understand that Chloe isn’t a “crutch” – she’s a tool. I use Chloe to be more safe and more aware of my surroundings. My husband and I very rarely go someplace without Chloe. However, occasionally we do go to places where we leave Chloe at home for her safety. These places may include: ICU areas of a hospital, zoos (where animals may become agitated since they want to eat Chloe), or to places that may have guard dogs (such as jails, etc.). When we occasionally go to amusement parks, I do not ride fast rides because of my balance issues. However, someone with an assistance dog may determine that these places are not good for the dog to be either. You can’t exactly put a dog on a roller coaster! So when I happen to be without Chloe, my husband has noticed that I am startled more easily because I don’t have anything alerting me to things I miss on my own.
I do not take Chloe with me to stores, church, and restaurants when I’m visiting my parents. They do not welcome the attention she draws. It is their home and I respect their wishes. I’ve had folks tell me, “WE will be your ears and watch out for you. You don’t need Chloe”. However, when I’m counting on people to cue me it never actually happens. People ignore many sounds that are just background noise to them. I’ve noticed that my parents can be having a conversation and stop on the curb while I just step right out into the road, unaware that a car was coming because they blocked my view of that direction. I have to be much more careful. I’ve also noticed that as a result of having a balance disorder, I stumble more when Chloe is not with me. In throngs of people, individuals “bump”, “crowd”, and invade the space of people around them because they are in a hurry. When I have Chloe with me, people notice and take care to stay outside my immediate perimeter. I’m rarely jostled or bumped when Chloe is with me. As a result, I fall and stumble less.
So Chloe does reduce my anxiety and create a different kind of awareness. I’m aware of HER. I depend on her. Having said all of that, having an assistance dog is not for everyone. In some ways it is like having a really smart toddler around. She investigates things with her nose, and yet I don’t want her to put her nose on every thing we come across. So I have to remind her “head up, Chloe” and be aware of things at her eye level. For example, because it is Easter season, going to Wal-mart means I need to be aware of all of the stuffed bunnies and ducks often at her eye level. Stores put them there so a child will say, “Mommy? Can I have this?” Well Chloe would like them too! So I have to be aware of her at all times.
At Fidos For Freedom, teams do a “meet and greet” activity. I HATE THEM. This activity is very hard on the people there who have a hearing loss. The idea is that you put your dog in a safe place and then communicate with another person or a couple of different people in a group. When you have a hearing loss though, you have to see the person’s face if you are in a large, noisy room filled with other groups of people talking. So it is difficult to make sure Chloe stays “safe” and STAYS PUT while actually carrying on a conversation. The activity is one of those “necessary evils” we endure so that we know what to expect in public – in REAL life.
I have heard people with hearing loss bemoan how difficult it is to carry on conversations when there is a “hub bub” of chatter around them. Sure, I may have a special program on my cochlear implant to help eliminate background noise, but it is not perfect! It is hard to concentrate on the speaker! Add to that trying to make sure your partner is in a safe place, only adds to the stress level a bit. So although Chloe eliminates much of the stress in my life, it can add to it as well. I don’t know that there is a good solution for “group meet and greet” for a person with hearing loss also partnered with a dog. (I’m open to any ideas though – grin).
Ok? SO?
Today’s post comes as the result of an email I received last week. With the person’s permission, I asked to blog about her question. “How do I know if an assistance dog would help me? Is it more trouble than it is help?” These questions are important ones if the person is thinking about training for an assistance dog. Some others you may need to ponder:
1. Am I OK with the attention having an assistance dog draws to me in public?
2. Am I OK with people stopping me and asking what the dog does for me?
3. Am I OK with having to pack a “bag” to go anywhere in order to make sure I have the things needed to travel with a dog?
4. Am I OK with occasionally being confronted and denied access?
5. Am I OK with having to care for and groom a dog daily?
6. (Because of #5), am I OK with having to invest in stock in LINT ROLLERS?
These questions and more are important things to consider if you are thinking about getting an assistance dog.
For me, the #1 benefit is that I am more relaxed and at ease in my awareness. I no longer feel the need to be hyper-vigilant and I’ve learned to trust my dog.
Where Can I Get One?
Self-training or Hiring a Trainer:
Countless owners have “self-trained” their dogs to perform specific tasks. There are pro’s and con’s to doing so. Private trainers can be expensive, but they can custom tailor a program for the specific needs of a person with hearing loss. Unfortunately, many dogs wash out before they can become service dog material, and a person might go through several dogs before finding one that is right for the work. Self-training is difficult, and also runs the same risk of washing out several dogs before finding the right one. But many who have self-trained their dogs have a strong bond and partnership as a result of this work. Usually, people who self-train have very good mobility or caregivers to help out, have had one or more service dogs in the past and have had some training experience, even if only with their own dogs. Individuals can hire a trainer as well and some of these trainers assist in “puppy selection”.
There are numerous organizations from which a person can get a “program” trained dog. A list compiled by Assistance Dogs International, can be found at:
Many programs offer training and a dog at little to no cost, as they depend on the generosity of donors, sponsors, and volunteers. Others have ways in which you can help to raise money for the dog being trained for you.
I recently read a post from one of my favorite bloggers. I love Herding Grasshoppers and NOT just because her son is hard-of-hearing. She is witty, adventurous and “real”. I rarely walk away form reading one of her posts without a smile on my face.
She recently posted about “Needle Ice” and frost heave. I was very intrigued. I’ve seen frost heave when walking trails before, but wasn’t really aware of what it was I was looking at. After reading her post I immediately went to look for more information about this phenomena. Frost heave occurs when moisture-retaining soils freeze in cold temperatures. As moisture sinks into the ground the freezing temperatures cause the water to freeze into ice. When water freezes… it expands and creates pressure. The soil presses up and may expose the roots of plants and has been also known to bring rocks and pebbles to the surface. Take a close look at the picture. The ice crystals have actually brought small rocks and pebbles to the surface. Once this thaws, the rocks and pebbles are left on top of the ground. One would almost think someone had “planted rocks” in an area that may have once been clear of them!
What “Heaves” out of you?
I have given a lot of thought recently about what kind of thoughts and actions are seen in my own life when the going gets “rough“? When my life becomes saturated with a seemingly endless bombardment of trials, problems, set-backs, health problems, and struggles, I am often left pleading with God “PLEASE! Not ONE more thing!” But ya know something? God must know my limits better than I do. Because there have been some difficult times that I have prayed and pleaded “not one more thing – thanks so much“, only to have a blast of cold air on top of my already “saturated life”. Exhaustion, pain, fear, depression and plain ol’ “bad attitudes” may have HEAVED to the surface of my life. These things are usually hidden. Some of the heaving exposes some thoughts and actions that just aren’t pretty. Some of it is just “junk” and “rocks”. The “heave” may expose “roots” as well and leave areas of my life vulnerable.
This past summer, I was having a pretty difficult time. I was doing my best to stave off depression as it is an unwelcome visitor that worms its way into my life at inopportune times. I was to the point of pleading, “Not ONE more thing God – please! Hello? Are you listening?” The next day Chloe was hurt in the park. For whatever reason (as we often will not understand this side of Heaven), God allowed ONE MORE THING. Chloe’s foot took a really long time to heal and I even had fears she would ever be able to work again. Yes, she is special to me because she is my hound dog and “doggie friend”, but she really enables me to be more independent too! What would I do if her foot would not heal? During the months (yes you read that right) that followed a lot of “stuff” heaved out of that pressure and into full view – especially to my family. It wasn’t all pretty. I was cantankerous (a nice way of saying PAIN IN THE BUTT) and aloof. I knuckled down and did the things I HAD to, but did not exert myself to do anything else. I had a major pity party several months long.
But not everything that HEAVES out of our saturation point is bad. Sometimes we discover that in spite of disability – we are very ABLE. You learn pretty early on what you CAN do, and end up doing it really, REALLY well. My saturation points have received an extra dose of FREEZE and heaved up compassion for others, patience, encouragement, and determination. I may stand and look around at the defrosted ground and spy a rock here and there. But sometimes? Sometimes I see beautiful geodes or prisms. I’ve not discovered a diamond yet – but heck. I’m only 44. I’m certain I’ve a great number of frost heaves in my future. Diamonds come with maturity. (If you ask my family – I’m not exactly THERE yet).
Have you experienced difficult times? Things that have happened in a life that already seemed completely saturated with problems and struggles? Don’t fear the weather forecast of overnight “freezing temperatures”. Meteorologists are RARELY accurate! If they happen to actually nail it one time? Welcome the heaving frost crystals to the surface and determine to unearth GOOD THINGS. Prepare your heart in advance to showcase determination, patience, long-suffering, gentleness, kindness, and love.
Experience enough frost heave and you’ll find that the soil of your heart and life is well aerated and primed for Spring.
You know? If I didn’t think what others thought of me was important… I’d never shave my legs.
I would throw my toothpaste away.
I would toss all of my bras.
After all, I do not do these things because smooth legs, peppermint breath and supported body parts do anything for ME.
I’ve heard folks say, “I don’t care what others think of me”. Oh really? If that were true, you wouldn’t have showered this morning and you’d be standing there in purple sweats;
and a red-checkered flannel shirt;
with one green flip-flop;
and one hiking boot!
Instead, your “outfit” (such as it may be) is color-coordinated to a degree. Your body odor reflects you care about hygiene.
OK. Maybe you are sitting there mentally clarifying that you may care what people SEE when they look at you, but – “I don’t care what people think of me personally”. Oh really? If that were true then when your spouse, teenager, co-worker, roommate, or walking buddy asked you this morning, “How are you?”, you would have responded with something much different than “I’m just great! How are you?”
Instead you would have thrown your hands up and said, “Well this is a POOPY day. My dog got in the trash this morning, my daughter forgot to run the dishwasher, I was running behind because I got up 20 minutes late, we were out of eggs so I had to eat CEREAL (face blanches), and I’m standing here with a wedgie if you MUST KNOW!”
But we don’t respond that way, do we? There are societal “niceties” that we adhere too. We know that, “Hi! How are you?” doesn’t mean that the other person really wants a play-by-play of how your day REALLY was. I don’t think that makes us liars. We are simply individuals that are part of a society that interacts somewhat superficially in our everyday greetings.
Yes – I know! There are some people we are just “straight” with and tell it like it is. But most of the time our interactions with others are not with those specific individuals. These special, specific individuals don’t care if we shave our legs.
Stay Positive, PEOPLE!
Take for example something that happened to me this past week.
I was out shopping and maneuvering cart, assistance dog, and SELF up and down the aisles. A woman noticed Chloe, my assistance dog. She came closer with real intent in her body posture and facial expression. I wasn’t getting really “friendly vibes” from her so instead of pretending to continue to shop so that I could keep an eye on her, I boldly faced her approach and waited to see what would happen. She made her way to my side with determination and pointedly read Chloe’s vest:
She then looked at the side of my head and noted my cochlear implant. She actually took two steps to the side to check out my OTHER ear. By this point… I’ll admit that I was a little intimidated!
She looked me in the eye and said, “So you need this dog yourself?”
Now you have to understand my IRE was already “tickled” and there was a part of me that wanted to respond:
“No, stupid. I bring this well-trained dog into public places because I like the attention. This cochlear implant and hearing aid? All for show, lady. As a matter of fact… (and I’d lean close to offer a conspiratorial whisper)… I. Don’t. Shave. My. Legs.”
But you know what? I care what people think of me. I care… because I care about others who have hearing loss. I care about others who live their lives with assistance dogs and service dogs. I want this ill-informed lady to walk away with a better appreciation for what I can do “in spite of“. So I plaster a semi-genuine smile on my face and gesture towards Chloe…
“Yes, I have a hearing loss and Meniere’s disease. Chloe alerts me to sounds I cannot hear, and picks up things I drop. Because of her, I can be out shopping without anyone with me and I never have to ask for help”.
Her face gets a lightbulb moment kind of look. “Oh I see”. She looks at me. She looks at Chloe. She walks away. I could still sense the disdain coming off of her. But at that point? It simply didn’t matter. I had taken a deep breath and responded in such a way that I remained a POSITIVE advocate for both people with hearing loss and people with working dogs. As she walked away I pinched myself to keep from stopping her to ask if she shaved her legs. I do admit that I leaned down to Chloe and scratched her head to whisper:
“Imagine that Chloe. It’s not even Halloween!” The witch with hairy legs walked away with some positive information about working dog partnerships.
We Need Each Other
I’m reminded time and again how much we need each other. I know a kindred spirit and dog-trainer who drove all the way to Frederick with her roommate who has a service dog to walk around the mall after my “incident” to show solidarity. These same people were all set to travel to Virginia to attend a vigil to protest that Andrew was not going to be allowed to have his service dog in school. Thankfully, the school board reversed their decision.
I know numerous trainers at Fidos For Freedom that spend countless hours training assistance/service dogs, training and instructing people… all without pay. They take dogs into their homes to spend countless hours OF THEIR FREE TIME, honing skills and modifying behavior so that a dog eventually makes an excellent match with a person that needs them. These are NOT people who “don’t have a life” either. They have families, jobs, pets of their own, ministries, hobbies, and goals. These trainers not only do not get paid, they rarely receive any recognition. They don’t do what they do for the recognition though. They do it because they love people, love dogs, and love to be a part of the connection that takes place between these matches.
I have another friend who constantly challenges herself by going back to school in spite of working full-time. She already has multiple degrees but she is constantly looking for ways to better herself so that she can better help others. She is heavily involved in hearing loss support, traumatic brain injury, enjoys wildlife and supporting her local zoo, and is an avid photographer. She has bi-lateral cochlear implants, but you’d never know she had a disability. She doesn’t live like she has one. She, like many others I know, live life in all the ways they are ABLE and don’t focus on the disability. (I love her… can you tell?)
I know people who volunteer and give of their time, resources, and talents to numerous non-profit agencies. Their goal is to serve their fellow man. They want to make a difference. They DO make a difference.
It takes just one BAD example of a person with a disability or special needs to sort of “spoil it” for the rest of us. As for me? I don’t ever want to be that person. I certainly take the opportunity to “belly-ache” to select individuals who know I just need to “vent”. I know – that THEY know – I may belly-ache about an encounter in private, but in public I will put on a brave face. They let me vent… and then hand me a razor.
Yes… we need each other. Don’t ever think that what you do – does not in SOME way reflect on others. As a person of faith I try to be extra careful. After all, I cannot go around “claiming faith” if I live as if I don’t have any at all. If I express that faith is important to me, I need to remember that my words, actions and life reflect how others see Christ.
“The dog days of summer”… whew! Has it ever been hot here in my home state! I could take a repeat of last winter’s snows, believe me! I’ve always preferred 3 feet of snow to 3 weeks of 95 + temperatures! Because of the heat, Chloe and I have been forced to walk pretty late at night. At “twilight” it is dark enough that it isn’t safe to be walking. At least not in my neighborhood where people go 40 mph in a 15 mph zone.
To placate my husband, I make sure Chloe and I are decked out in a number of things that are reflective. I wear a reflective vest, and Chloe a reflective collar. The leash I carry actually lights up near the handle end, and it also sports “lighted bling” of various kinds. I’m sure from a distance we must look like Santa and his team of reindeer! Small price to pay … this GLOW IN THE DARK preparation — for a safe walk! I didn’t anticipate having to walk so late at night, yet preparation has made all the difference.
I’m safe.
It is cooler.
We walk faster.
No… really! Not sure why that is, but the big “loop” we walk is usually 7-8 minutes faster than if we walk when there is more light. Perhaps because we aren’t having to stop to get Chloe re-collected after startling a bunny? Either the bunnies have an early bedtime, or they simply are not seen as easily.
Just Because it Wasn’t Planned, Doesn’t Mean You Don’t PREPARE
I know of very few people who planned to acquire a disability or to be diagnosed with chronic illness. I have become acquainted with people who have progressive hearing loss or are deaf, people who have lost their eyesight due to Usher’s Syndrome, people with MS, Parkinson’s, Meniere’s disease, and Chronic Fatigue Syndrome, people with fibromyalgia and many others who find that they are living a life they didn’t exactly “sign up for”.
So what do you do?
Give up? Try to get a refund? Sue?
Well… most of the people I know “deal with it”. They do so in their own way, and for some it may mean working through it. Working through it for some people may mean that they have a pretty long period of time either denying the problem or grieving the problem. Each of us do this, but some spend more time on these steps than others. That’s OK. I get really aggravated when I hear someone tell a person learning to live with changes that affect their life that they need to “get over it” and “get on with life”. I guess I’m aggravated because the person saying that usually does not have the same diagnosis as the person they are preaching at! However, I do sometimes see someone who DOES share the diagnosis “preach” the same. Just because YOU did not grieve your hearing loss — or whatever it may be that you are dealing with — doesn’t mean that other people deal with the loss the same way.
Once you do work through that process, however, you can start to prepare. Preparation is key. For me preparation looks like this:
1. I always have #13 hearing aid/cochlear implant batteries. I carry some in Chloe’s vest, the car, my pocket book, and Chloe’s treat bag. I have them in my bedroom and my office.
2. My cane is right by the front door. If it is rainy or if there has been a pressure system come into the area, having my cane “handy” insures I actually take it with me out the door. No one “messes” with where I put my cane. If you move it, you risk life and limb (grin).
3. I leave early to arrive early. Let’s face it. It takes me longer to get to where I’m going. For one thing I travel with an assistance dog, and I have to spend a couple of minutes allowing her to “do her thing” before going into a public place. I have to load her up safely in the car. I have poor peripheral vision on one side so I drive the speed limit in a world where no one else does. I allow extra time to get to places ON TIME. Sure! I’m early sometimes, but I am rarely late.
4. I never walk out the door without my cell phone… and I am ZEALOUS about making sure my phone has a full charge. As a matter of fact… I have my cell phone on my person almost every waking moment. (Perhaps something to do with having a kid in college in another state now?)
5. I make it a PRIORITY to get eight hours of sleep. This is so important, I schedule myself to get at least eight hours. Heck! I’ll be honest… I actually do better with nine, so if I can schedule that I do! Having a cochlear implant is terrific! I love being able to communicate without having to actually be in the same room with someone. I’m fairly certain it’s not AGE… it simply takes a LOT of brain power to communicate now! Who’d have “thunk” that communicating with a hearing loss could be so exhausting. It doesn’t seem fair that no calories are burned! It is mentally (and sometimes emotionally) exhausting to communicate with hearing loss. If I get less than eight hours of sleep, it is very noticeable that I do not communicate as well. Fatigue will do that.
6. I make sure I travel with information about service/assistance dogs. You never know when you may have access issues. As a matter of act this has been a pretty prevalent part of our lives lately. (See the links here (with a video too!), here and here).
7. I avoid sodium, limit caffeine (something I find nearly impossible), and take Manganese! These three things I have found to be very helpful in limiting the effect Meniere’s disease has on my own life. Manganese is hard to find too! (Magnesium is plentiful… Manganese not so much). Remembering to make these “BIG 3” a priority, really makes a big difference in how severe my symptoms may be when an episode hits.
8. I memorize and use lines that best describe my communication issues and how I can solicit positive responses. These include:
A. You speak wonderful English! However, I have a hearing loss so I have trouble with accents. Could you repeat that a little slower please?
B. I have trouble understanding in background noise. If you would face me when you talk, I should be able to speech read and hear with my CI (point to it) and hear you much better!
C. I missed what you said. What I heard was (and I repeat the parts I heard). Could you repeat what I missed? (This way folks aren’t having to repeat EVERYTHING).
D. It’s so noisy in here that I am having trouble pulling your voice from “all this chaos”. Can we step over there (points) to a quieter spot? I really want to hear what you are saying.
E. Do you mind if we sit down? My balance is “off” today and if we sit it will give me one less thing I have to deal with!
F. Let’s step over here to talk so that I can put Chloe in a “safe place” so she won’t get stepped on.
There are many more… but it pays to rehearse and have specific examples to communicate to others your attempt at being proactive to help yourself. I have never… not even one time… had someone respond to these types of explanations in a negative way. Preparing explanations like this keep me from slipping and offending someone by spouting off:
A. Geesh, your accent is killing me! I can’t hardly understand what you are saying!
B. Would you quit mumbling and speak slower please? Gee whilackers!
C. HUH?
D. WHAT DID YOU SAY? (In a super loud voice trying to drown out all the noise. Now ever eye is on you and the person who was trying to talk to you).
E. (Denise is bumped and falls to the floor in a tangle of arms and legs… including doggie legs).
F. STOP STEPPING ON MY DOG!
Preparation = Ownership
In preparing and planning, a person with an acquired disability or chronic illness in essence choose to take ownership of their own life. It isn’t another person’s responsibility. It is ours. What ways do you prepare and “own” your life to better live with a disability or chronic illness?
So do you have a great imagination? Unfortunately, I did not have my camera when the incident occurred that I’m about to explain. Even had I located a camera at the time, I certainly would not have had time to “snap” pictures! (You’ll understand in a moment).
So allow me to try to explain with words what happened at work yesterday. Perhaps it is just “one of those things” that happens to people with assistance dogs. This had never happened to me, however, and so I was totally taken by surprise!
I tread carefully in the tellin’ for it took place in the bathroom of all places! Ever wonder what a person with an assistance dog does when they have to go to the bathroom? It’s not like you can hitch your dog up at the post while you go in and “do your business”. You do not want your assistance dog sitting or laying on the floor. I mean… we are in the BATHROOM, folks! A “stand” and “stay” is the perfect obedience command for this environment.
If the handicapped stall is free, I always head for that one. The extra space is nice when accompanied by a furry partner. Sometimes the handicapped stall is NOT free, so then we have to make do with the smaller area. Yesterday the handicapped stall was free, however, so Chloe and I went into that space.
I put Chloe in a “stand” and “stay” first. She rarely moves, however she will sometimes duck her head to peek into the next stall. I try to watch for this because honestly? What would you do if a furry, friendly head looked under to say “boo”? (I’ve heard screeches and even SPLASHES before… so yeah. I try to keep her from doing this!)
Now yesterday was a sunny day. For those readers who may not know me very well, for ME this means that my balance was pretty good. My Meniere’s disease is at its worst when it is rainy outside. Mine seems to be triggered by the weather. So on a sunny day, I … like most grown women… have the ability to erm… HOVER. It’s very handy. (Men just have it made in this regard, don’t they?) On rainy days I have to make sure I can locate a seat protector, or take the time to lay toilet paper down to cover the seat. On sunny days, I can get right down to business and out of there fairly quickly.
My restroom “OH MY GOSH I’LL HAVE TO WRITE ABOUT THIS” escapade was one of the last things I accomplished at school yesterday. I already had my car packed up, and only took my keys and Chloe to the restroom. Because it was sunny, I was able to HOVER, but I needed to be able to put my keys somewhere. They have a long purple strap on them so that Chloe can pick them up easier on my “bad days” should I drop them. I put the purple strap in my TEETH, hovered … and took care of business in 10 seconds.
Without going into a lot of detail about what happens immediately following the “hover” (use your imagination), I still had my keys in my teeth. Chloe was still in a dutiful “stand” and “stay”. Remember that this was a “good balance day”? I never flush the toilet with my hands on a day I can stand on one foot and accomplish the task with my other foot. It’s the germs ya know? So I did a “karate kid” immitation, and used my left foot to flush the commode.
Chloe decided to side step out of the way. (She’s seen this WEEBLE wobble and FALL DOWN so many times, she evidently wanted to make sure she had space to move if needed). I saw her out of the corner of my eye getting ready to move, so I said, “Ach… wrong”.
Funny thing about holding something in your teeth and deciding to talk at the same time? Yeah. The natural law of gravity will never let a person down. My keys tumbled and bounced off my extended “flushing” knee and right into the toilet!
I screeched. I’m pretty sure it wasn’t quietly.
Chloe retrieves objects that I drop in what the trainers call an “automatic retrieve” for partners with hearing loss. So she scooted around me and looked down into the disappearing water in the commode at my keys in the bottom of the bowl.
I screeched. I’m pretty sure it wasn’t quietly. (This isn’t a typo… it simply happened twice).
I was scrambling… what to DO? I didn’t TRAIN FOR THIS. Chloe put her paws up on the toilet seat to better lean down into the bowl so I reached for my treat bag, and my hand connected to my clicker. Now… I was running on adrenaline at this point. When my hand came into contact with the training clicker, I did an automatic “click”. (Erin would be so proud…) So now Chloe thinks that what she is doing is what she is SUPPOSE TO BE DOING! I clicked … which indicates to HER… “YUP, you got it right”! She now has her head down in the toilet bowl and is bobbing for apples my keys.
I screeched. I’m pretty sure is wasn’t quietly. (yeah… you get the picture!)
I pushed her wagging body out of the way and quickly reached in to pluck my keys from the toilet bowl. It now had completely filled back up with water. Chloe stood there expectantly … eyes on the keys… waiting for me to drop them again. Cuz, ya know? This was a TERRIFIC GAME!
There I stood in the bathroom of Chieftain Institute on the campus of Gaithersburg Church of the Nazarene with dripping keys in one hand, while looking into the dripping face of my assistance dog. I had two choices. I could laugh – or cry. So I…
screeched… I’m pretty sure is wasn’t quietly. (There was a 3rd choice).
I exited the stall with as much grace as I could muster. I washed my hands well, and my keys. I tried to avoid getting soap and water in the electronic key to my car, but honestly? Did it matter at this point?
I walked forlornly to my car with a very happy assistance dog in heel, my head bowed in defeat. As I neared my car I tried to unlock my car with the very wet key… which of course didn’t work. I went around to the driver’s side of the car and looked for the “unlock” key hole which I had NEVER HAD TO USE BEFORE. After loading Chloe up and getting her settled, I climbed into the car and adjusted my mirrors. I caught sight of Chloe’s wet head and finally saw the funny. (You really DO have to laugh to keep from crying sometimes!)
When I pulled into my driveway about 45 minutes later, the first thing I did was use a hair dryer on my key. (Yes… no worries! Chloe got a bath too!) Would you believe the key is working this morning? It will lock and unlock my car just as if I hadn’t given it a “swirly”! I DID have to give it a new attachment though! I carefully washed my other keys and rings, and used a macrame stitch to create a new “bob” for Chloe to be able to pick up.
On the bright side of things, at least it matches Chloe’s vest now!
I talked to my mother on the phone yesterday and she and Dad had a big project in which to look forward to for today. They have a beautiful lanai in the back which includes a very nice fish pond and miniature waterfall. In spite of a pump and filters, the pond does need cleaned once in awhile. Evidently, the time had arrived. The Koi have to be erm… “fished out” and placed in big 5-gallon buckets. Then the pond is drained. Next, the rocks and pond are scrubbed and washed with a high-pressure hose. It takes time, and I imagine it’s a messy job. I also imagine one gets a little wet – at least I would.
I called Mom again around 3 PM today. She was pretty bummed. It seems that when putting the fish back into the now clean pond, they didn’t provide enough time for them to acclimate to the temperature change. At the time I talked to her only 4 were still alive, and she lost some of her “big ones”.
Use to the Scum
I suppose my parents could have chosen not to clean their pond. But it evidently gets bad enough you can’t see the bottom. They have a proliferation of live plants and lily pads, but all of these natural AND man-made filters can’t undo the fact that the pond does not have a constant source of fresh water being piped in like mother nature provides. The Koi do not seem to care that the water gets to where they cannot even be seen swimming around. They grow accustomed to all the scum.
Aren’t we that way sometimes? I remember when I first got married, my husband and I did not go to a movie if there was harsh language, sex and nudity, or “adult themes”. We now use a service from “Screen It” . Before going to a movie, we literally screen it. Screen It tells you how many cuss words are in a movie and what they are. It tells you if the movie has any nudity in it, or adult themes. As a matter of fact, it will actually give the entire movie away if you read the whole review – grin! But we have used it a great deal because I just have trouble sitting through movies that are one curse word after another. I don’t care who plays in it or how highly acclaimed it is. But you know something? We make a choice that our movies have to have “less than 10 curse words” in them, and certain curse words are “worse than others” in our thinking. But are they? Aren’t curse words, curse words? And who decides how many is too many? It’s a slippery slope, let me tell you! It takes a lot of dedication and determination to stay true to what we’ve determined we’ll pay money to see for entertainment. I can’t help but feel as if we are agreeing that “a little scum” is OK though.
I heard a young lady recently say that someone they work with let them borrow a book to read. The owner of the book said, “There are no curse words, and it’s clean… you’ll like it!” This young lady was astonished at not only the language in the books, but there were sex scenes. She wondered out loud how that could be? I hypothesized that perhaps the other woman had grown accustomed to the language and written scenes where they didn’t have an impact on her anymore. She didn’t recognize the “scum”.
The SHOCK Killed Them
I’m a bit of a homebody. (I cringe knowing how my family would groan about that). OK, OK… I’m a HOMEBODY. However, my personality is pretty outgoing. I do like talking to people and interacting with them. However, after I lost my hearing and developed a balance disorder, I pretty much began staying at home. Even though I hear voices very well now (in most environments), I still haven’t reverted back to my (literal) outgoing self.
I’m going to a lady’s home this Wednesday for lunch. She leads a Bible study for women in my church. I use to lead Bible studies; in fact, I was one of the main leaders and went from one study to another ten years ago. I use to go shopping and hang out with friends quite a bit too. Now… not so much.
Don’t get me wrong… I’m HAPPY. But I didn’t start out this way. The more silent my world became, the more silent I became as well. I quit everything that required I interact with people. I intentionally isolated myself. It took some time. It was a slow process – I didn’t wake up one morning having become a hermit. So now that I am hearing again with my cochlear implant, and have some of my independence back thanks to Chloe, it has taken some time to make a gradual adjustment to “getting out there” again.
My parents should have kept their Koi in a 5-gallon bucket a while longer. They may have still died… Koi can be very sensitive to change. People can be too – especially people with acquired disabilities I think. Making adjustments in our lives can take time. For one thing… learning to trust can be hard. Learning to believe in yourself again can be even harder.
I have a friend with chronic fatigue syndrome and fibromyalgia. She is a self-isolated individual. It happened very slowly over time. It became harder and harder to explain her disease to other people. She had more “bad days” than “good days”. Constantly having to cancel plans eventually led her to not make any plans. When you look at her she LOOKS FINE. Try explaining that you are NOT. I feel for her. I know what it is like to have an invisible disability. (Still another reason I sport CI “bling” and decided to be partnered with a canine. Nothing says, “something is DIFFERENT” than going everywhere with a working dog!) She is now trying to reach out again, but she is taking it very slowly. After all, it can be “two steps forward and three steps back” many times. I think taking it slowly is a good idea. Acclimation TAKES time, after all.
Do you know someone with an invisible disability? Do you know someone who has a disease that exhibits “silent symptoms”? Perhaps they have isolated themselves and are convinced they are a homebody by CHOICE. They may seem happy. I’m not saying go BUG the heck out of someone who has opted to avoid being in public as much as they can. But I think it is also OK to reach out. Maybe bring lunch to THEM. Working in your garden? Pick some tomatoes or flowers and take them to this person. Email them occasionally. Offer to take them shoe shopping. Who says no to that? (GRIN) Just be aware it may take them some time to re-acclimate themselves to being out more, or having a friend over.
One reason I love the Internet and love to blog? I have “met” an awful lot of people just like me. Some I call “friend” too… for we’ve gotten to know one another and have learned to share our life’s story. We’ve connected. Things like Facebook can do that too, or joining online support groups. I’ve heard some people say, “yeah but those aren’t REAL people”. Excuse me? Behind that keyboard is the mom of a child with hearing loss – and she homeschools too just like I did! Behind another keyboard is a lady who lives with invisible disabilities who is training her own service dog in a big lovable Great Dane. The person who clicks that mouse has MS and has a wonderful service dog who gives her some independence. Numerous “point and click” folks out there have cochlear implants and love to talk about them too! These are real people; our connection is real.
If you know of someone who seems isolated (whether self-imposed or not), encourage them to get a good computer with reliable Internet service. You’d be surprised at the amount of support they can find out there… the connections… the friendships!
Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA
Spring Break! My entire family was on “Spring Break” last week with the exception of ME. As this was Kyersten’s last Spring at home for awhile she was determined to do something “fun” everyday. Friday, she and her daddy had planned to go to Lancaster County. Since I DID have Friday off, I invited myself along.
Two of our favorite places to go in Lancaster County are Bird-in-Hand, PA and Intercourse, PA. (At the latter, my daughter always tries to talk me into a t-shirt that says, “I love INTERCOURSE!” Let me think for a moment. Umm. NO!!)
We enjoy walking around the shops, and my husband was thrilled because on Fridays the Farmer’s market is open as well! Next to and ABOVE the area where the main Farmer’s market is located, are some neat local shops and antiques. Chloe and I found a rickety, old staircase to the top floor and carefully made our way UP.
When we made it to the top, I noticed that Chloe was lagging (walking behind what is a proper heel) which is something she just NEVER does. Her problem is “forging ahead” on a normal day! So I looked back to remind her to heel and noticed something. Her legs were shaking so badly, I could see the hair on her legs and stomach trembling. (What in the world?) Something had her spooked, but I couldn’t tell what it was. I patted her on the head, and asked her to heel again. As soon as I took a step I knew what had her rattled. (Now that I was paying attention… that helps! GRIN) The old, creaky, wooden floors had a lot of “give” and groaned and moved under our weight. I’m sure she could hear it AND feel it! I thought for a second and then decided to stand next to her and shuffle around, tap dance and “hop” standing next to her. At first she dropped like she’d been shot and lay trembling on the ground. I kept talking to her softly and continued to erm… ACT LIKE AN IDIOT. I’m sure anyone downstairs probably thought the world was coming to an end! Five minutes and 150 calories later, Chloe sat up and watched me with a tentative tail flop. Ten minutes more, with a more normal volume and another 150 calories burned, I found her standing next to me with tail wagging like crazy – simply thrilled that I was inviting her to dance.
Chloe was afraid. The foundation beneath her had to much “give” and groaned and complained at our movement and weight. She wanted to STAY PUT. It took a more confident friend to convince her that all was OK.
Feeling Insecure?
At some point you are going to be either the trembling pup, hugging the floor with nails dug in and eyes wide as saucers, or you will the confident friend who gently persuades you to “get on livin’ it”.
I can’t think of a time when I felt more unnerved than when I felt as if my very foundation was wobbly. You count on your foundation to “HOLD”. It is from a solid foundation that one can build and grow. What do you do when your very foundation is creaking and groaning? How do you “shore up”?
I’ve not made it a secret that I am a person of faith. I believe that God created everything and remains very “HANDS ON” with His creation. I believe that we BLEW IT. Because we are all sinners and in need of a Savior, God sent His one and only Son. Jesus died for you whether you wanted Him to or not! Salvation only comes through believing and accepting that free gift. Any other foundation is going to fail you.
People screw up. They are going to disappoint you.
Careers are temporary. Someone younger, smarter, better looking, and who will work for LESS is going to come along.
Community service is great! Volunteering and making a difference in the life of someone else proves you are someone who LIVES what they BELIEVE. But you aren’t going to be recognized each and every time. “Man” or “Woman of the Year” is only a plaque that gathers dust.
You may be healthy. Yet that can all change in a day. Disabilities, disease, and suffering are something all of us will experience is one form or another.
Life can be very hard. Life can also be very… VERY good. But what happens to YOU when life is hard? What does your foundation feel like? Will it hold?
When I am FLAT ON THE FLOOR terrified to continue, I often turn to prayer and scripture reading. Sometimes God sends along a friend who will tap dance, hop and gently persuade me that all will be OK. Perhaps they’ve lived the same thing and came out … better.
You know? Chloe left that upstairs shop a different assistance dog. She was confident about that next step we were going to take. (Denise danced and hopped and didn’t fall through the floor!) We made our way back to the Farmer’s market to find something yummy to eat. I’d burned 300 calories ya know…
Scared to go on? Perhaps you need to rest awhile. Rejuvenate. Maybe you need to do some introspective reflection. Does your foundation need some repair?
Found someone hugging the floor? Don’t preach at them. Don’t ignore them either. Pray for them. Let them know you are there. Share your story. Tap dance.
After all, the Amish are outstanding carpenters. That floor is going to hold.
Hearing Elmo 