I thought it would be a perfect topic to expound on as I “re-launch” Hearing Elmo after a year-long (forced) hiatus.
Just a little bit of background information in case you are new to “Hearing Elmo”. At the age of 6, I was struck by a car and suffered a TBI, fractures, and permanently damaged my left ear/hearing. At the age of 18, I had the last of multiple surgeries to try and restore the hearing in my left ear. By the time I reached the age of 25, the hearing in my left ear was gone and the hearing in my right ear was already at a severe to profound level. I was diagnosed with Meniere’s disease at the age of 31 and I have suffered numerous concussions. Frankly, I am very blessed. Meniere’s disease alone can completely debilitate and disable an individual if the symptoms are bad enough. I wobble when I walk, but I am able to work and stay involved.
That doesn’t mean it is easy.
I don’t know about you, but having a number of disabilities also means that I “crash and burn” frequently. By 5-7 PM (my “witching hours”) I’m a puddle of senseless, zombie-like goo. If you suffer from a chronic disease or invisible/visible illness, fatigue is one of the most common symptoms. Not just a “GEE, I’M TIRED”, either. This is a major negative impact on normal function, a type of extreme tiredness and weakness.
Who experiences debilitating fatigue?
Multiple sclerosis: 91% of those diagnosed
Arthritis disorders: 73% of those diagnosed
Pain disorders: 94% of those diagnosed
Sensory disorders (functions of any of the senses): 89% of those diagnosed
These are just a FEW of the numerous disorders people struggle with each day. Many, you may not even know they have the diagnosis. They hide it well and are aware of their own “witching hours”, staying home to recuperate as needed.
So back to the topic…
Don’t you think that people with disabilities have every right to their excuses for exiting the freeway? I feel pretty entitled to saying “no, I can’t do that”, frankly.
As a matter of fact, after my hearing was completely gone and Meniere’s disease made it impossible to stand without wobbling, I had a pretty concrete plan of action to isolate myself, quit life, and whine loudly while doing so.
That changed in the year 2000 when I discovered the world of advocacy and activism. As I got to know folks with challenges that far-exceeded my own, yet discovered how involved they were in life, I knew I needed to stop exiting my freeway. I will never forget the email exchange I had with “Sheila” in May of 2000 in an online support group for people with disability and depression. Sheila is a quadriplegic and is also a breast cancer survivor. Sheila blogs, works as a mentor, and makes a nice amount of $$$ as a graphic designer part-time. To my shame, I found MANY people who are active in life and ditched the excuses long ago. Those excuses I felt rather entitled to, suddenly bore little weight.
As I learned to stay on my freeway, I learned that discovering and testing coping mechanisms and accessibility options was a real growth catalyst. When my “CAN’T” became more of a CAN DO, my overall outlook on life changed, too.
Rest Area/Welcome Center
Don’t be unrealistic. Even “able-bodied” people need to rest. Those of us with challenges beyond the norm, likely need even more rest. I make a “good night’s rest” a major priority in my life. Without sufficient sleep, my witching hours move from “5-7 PM” to noon! Like many who live with disability, at times my body just says, “ENOUGH”. I wisely take the next “exit” and rest as needed. (If you’ve never read the SPOON theory, it is well worth the read). As you really get to know yourself and early warning signs, you can even plan your “rest stops” so that you are quickly back on the freeway.
I have a friend in a Meniere’s disease support group. Her disease is one of the more severe forms. One exchange she had with me was a personal epiphany for us both. We were instant messaging back and forth and she was so down about not being able to make a difference. She couldn’t work, felt she wasn’t a good mom, had days where she could only crawl around the house, and was super tired of delivery since she couldn’t cook. However, during the course of our conversation, she realized that she was in daily contact with several others who suffered from severe Meniere’s symptoms. She knew — without a doubt — her daily notes of encouragement meant something very profound and meaningful to these people. She may only have been able to “reach out and touch” someone through her computer while laying in a recliner, but those daily messages… MATTERED. She then realized that for her own circumstances, she was moving forward on her own freeway. My housebound friend with a disabling condition is a very encouraging and instrumental woman of purpose.
I hope that no matter where you are in your own journey, you recognize the necessity of exiting to REST, but also find the entrance ramp to the freeway ASAP.
L. Denise Portis
©2018 Personal hearing loss journal