Embracing It!

"So... tell me the truth. How does this look?" (Terry) "Baby? You are rockin' that helmet!"
“So… tell me the truth. How does this look?” (Terry) “Baby? You are rockin’ that helmet!”

I believe that there are very legitimate reasons for people who choose to keep invisible disabilities invisible. I respect their choice and their reasons for doing so. In many circumstances, it makes “good sense” and isn’t at all about vanity or shame.

I am “all out there” for lack of a better way to put it. In my profession, in my life, in the community service arenas I’m involved in, and for personal safety reasons, making my invisible disabilities – visible is the right thing to do.

I wear bling on my implant. I think it is fun. It puts a smile on my face. I’m so SO thrilled to be hearing again. The progression of my hearing loss took 12 painful years. I was completely deaf for almost two, silently researching and investigating cochlear implants. I’m so proud to be hearing again. Some say I’m flaunting it. Ummm…

YEAH.

If you do not want to bring attention to disabilities, do not ever choose to be partnered with a service dog. Even though our dogs are taught to be nearly invisible (and don’t you know folks are always startled when I get up to leave restaurants because they had no clue my dog was there?), when you walk through a store or into a doctor’s office, your service dog will bring attention to the fact that “something is different about you”. It has been a very long time since working dogs were only trained to be guide dogs. There are diabetic alert dogs, seizure alert dogs, autism dogs, PTSD service dogs, mobility assist dogs, balance assist dogs, alzheimer assist dogs, hearing assistance dogs, and the list goes on! My service dog makes me more independent. I don’t have to ask for help nearly as often. I don’t miss things (sounds my CI won’t pick up), and I’m confident and more safe. But choosing to have a service dog will bring attention to you.

When my Meniere’s disease worsened, I finally realized that 3-5 falls a week were too many. When I have my cane, I stumble maybe 3-4 times a week, but rarely go all the way down. I average only 2-3 falls a month now. I have three canes. They are bright, bold, and beautiful. I don’t try to hide that I carry a cane with me.

I love to be outside. Perhaps it’s the “farm girl” in me, but I love to be outside and love to walk. Just because I have a balance disorder does not mean that I am going to stop walking. Yet… I seemed to have trouble doing it safely. Even with cane and service dog, I was still taking tumbles when the roads or sidewalks were bad. Winter is my favorite season. I love snow, love ice, love “visible breath” in the air… but I have had some bad winters, 3 years in a row. As a matter of fact, when perusing my medical records with my neurologist, I was averaging 2 concussions each year, usually in Winter months. My last mild concussion was March 8th. I have a follow up with my neuro the first week of May. At the last appointment, he said, “You know. You need a helmet for when you walk!”

I laughed and said, “all my friends tell me I need to be wrapped in bubble wrap or need to wear a helmet.”

He looked at me eye-ball to eye-ball and said, “You don’t understand. I’m being serious. You CANNOT continue having concussions”.

Oh.

OH.

NO FREAKING WAY!

I sat there a little stunned for a minute but then began to consider the possibilities. I’m not afraid of what people think. I don’t care about what is fashionable – heck I consider myself a “disability-advocate fashion expert”. But could I embrace a helmet for walking when road and sidewalk conditions were bad?

I decided that yes… Yes, I could!

So I started researching, (cuz, yeah, that’s what I do) and found the helmet I wanted. I was crazy ecstatic that it is called a … “Brainsaver“! Ain’t it great? *BEAMS*

Triple 8 Brainsaver Rubber helmet with Liner in Rasta Yellow
Triple 8 Brainsaver Rubber helmet with Liner in Rasta Yellow

I blinged up the helmet with some of my favorite stickers, (I’m a nut for daisies), and now I’m all set for walking. I even fixed the liner where my cochlear implant magnet had a little place to “rest” inside so it would not get pushed off.

I realize my approach to MY LIFE may not work for you. However, I love embracing who I am and holding my head high. I want to be an example to others, but I certainly know and understand that it is “different strokes for different folks”.

I hope I can report this time next year that I haven’t sustained any new concussions. Yay for me, and yay for neurologists who push to get their patients to take their brains seriously.

Denise Portis

© 2015 Personal Hearing Loss Journal

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8 thoughts on “Embracing It!

  1. Great share and proud of you for actively protecting yourself from injury.. you are so important to so many. Love the yellow and daisies are so cheerful!

  2. Love your Brain Saver! I’ve also hit my head but you are the winner of times a week, month, year, so good for you that you’re now sporting a helmet just like the XGames kids. Daisys are wonderful, but I persoanlly like your colors as they match my Green Bay Packers. Walk on dear Denise, you are free to roam about the country but in safety. So happy you have a great doctor.

  3. I loved reading this! I have vestibular migraines which is very similar to Meniere’s but without the permanent hearing loss. I’m having more frequent drop attacks and was looking for some type of solution on getting help especially when I am alone. I have not responded well to preventative medication, but am able to “recover” with medication after an episode.I never thought about a service dog, but this is something I will definitely be looking into. I have a couple questions for you. Do you still drive? Do you work? How did you start the process for finding/training a service dog? I’m sorry if I am asking questions you have already answered in previous posts.

    1. Hello Kaitlin!

      I am lucky in that my first exposure to something other than a guide dog for those with vision loss, was from a program that actually operates in my area. Both my first, almost retired, service dog, and the successor dog I am currently training for are from Fidos For Freedom, Inc. in the MD/DC/VA area. They limit whom they will work with to an 80 mile radius of the training center so that trainers can easily travel to and from homes and workplaces, and so that clients in training have easy access to the training center location for the life of their working dog. You can check them out at: http://www.fidosforfreedom.org

      I highly recommend programs that are affiliated with Assistance Dogs International. These programs agree to a certain standard of training and requirement for both canine and human partners. You can check out their program search site at: http://www.assistancedogsinternational.org/members/programs-search/ where you can center your search over (for example) certain states in the U.S.

      I do still drive, but not at night. One of my Meniere’s disease triggers is lights at night. So I’m not actually night blind, but rather oncoming traffic triggers dizziness and vertigo when I’m driving at night. I am still (currently) driving during daylight hours. I work part-time as an adjunct professor at a local college about 10 minutes from my house. So my commute is ideal for someone with an invisible illness and I’m also able to do most of my prep work from my home office. I know many people with vestibular disorders who still work – I think the key is finding what works for you. Some individuals (for example) cannot do work that primarily requires the computer because of the eye strain and motion triggers that may influence attacks.

      My service dog has been a real blessing when I have issues and am alone. She can retrieve my phone for me, “go get________” (individuals that I request by name), etc. Although I don’t have one, service dogs can even easily be trained to trigger a medical alert device to let friends or family know you need help. My service dog has given me a great deal of confidence as well as assistance in doing things I was loathe to ask people to do on my behalf. (For example, pick up things for me that I was constantly dropping).

      Good luck in your search for more information, and please let me know if I can assist in any way.

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