Once in awhile I have to re-evaluate my priorities. A good way to discover what our focus is, would be to determine how much time we spend on various activities and tasks. If we spend a lot of time on something, chances are it is a priority for us. Priorities can be short-term or long-term. Priorities change and are influenced by circumstances and even people.

Hearing Elmo devotes “space” to posts and stories about acquired disabilities and chronic illnesses. As important as it is for me to have a place for guest writers to tell their story, I strive hard to not allow my disabilities to become my focus. That can be hard to do when your life may seem to revolve around managing symptoms and learning a “work around” in doing everyday tasks.

When Managing becomes your Focus…

There is nothing wrong with learning to manage how you do even simple household tasks with a disability. After all, chances are your symptoms may vary or you may have a progressive illness or disorder. Taking the time to safely navigate “life” is important. However, I have allowed that management to overshadow important things too.

I’ve discovered when my response defaults to “I’m sorry, I cannot go”, I may have slipped into a bad habit of allowing my disability to manage my life instead of my managing my disability. I have a friend who was recently diagnosed with MS. She was already managing a number of mobility issues with service dog, walker, cane, etc. Within the last year she has been hospitalized a number of times and no longer can drive herself. But you know what? She has learned to ask for assistance and rides when she is feeling well enough to attend things like training at Fidos For Freedom, Inc. She refuses to isolate herself and continues doing what she enjoys on days she can safely navigate her “new normal”. She is managing her mobility issues and MS with CLASS. Her MS is not managing HER.

It’s easy to allow how you FEEL or how difficult it may be for you to go places, to isolate you from the things you enjoy. It is hard for me to go places when it is rainy. Bad weather worsens the Meniere’s disease symptoms. I don’t have the choice to stay at home when it is raining if I have classes that day. If I am home on a rainy day, I don’t have the option of laying in bed holding my spinning head. Instead, I’ve learned to MANAGE.

I’ve learned that if I’m making excuses to not do something I would normally want to do, I’m letting my disability manage ME. Recently, a small group of couples that attend my church went to Hershey Park together. I cannot ride most rides at amusement parks. There was a part of me that really wanted to “beg off” going. The group was going to be gone almost 12 hours. The long day was a great way for me to make excuses and not go along. However, I knew I needed to go to something even if I had to take some time to find real “work arounds” to go. We took a car instead of riding the bus so that I could leave after 4 or 5 hours. I rode a number of rides that were easily navigated for one such as I! I had fun! And… it rained that day.

I spent some quality time with my husband and friends. The effort was worth it. Had I taken the easy route, I wouldn’t have gone. There is actually a lot in my life I would not do if I always chose the easy route.

You may be thinking, “You have no idea how difficult it is to live with the disabilities that *I* have to manage!”

There is a lot of truth in that. Even my husband – who lives with me – cannot completely understand all that I must do to work outside the home, run errands, do laundry, cook, clean, etc. In the twenty years I’ve had in having both hearing loss and Meniere’s disease, I’ve even learned that we can share the same diagnosis and still have completely different symptoms, triggers, and difficulties. Yet, each one of us (stop shaking your head… ) EACH one of us can manage our disabilities and still contribute to LIFE. Being purposeful is important – it makes life worthwhile. Some amazing people I know include:

– A friend with MS who coaches numerous sports teams for special needs youth and volunteers a number of hours to a local service dog organization. Even when she is tired, she drums up the energy needed to be a blessing to others.

– A friend with MS who is also a survivor of stroke who writes and encourages people DAILY – all through the use of timely emails and cards. She is a blessing to MANY.

– A trainer/friend I greatly admire who also has Meniere’s and recently went through cancer treatments as well. She gives much of her life to adults with disabilities and the dogs being trained to help them. Her community service hours add up to the 100’s – something she never takes a calculator to figure up simply because she does what she loves… helping people.

– A friend who manages fibromyalgia, CFS, and Lymes disease and still has one of THE MOST helpful owner-trained blogs about service dogs on the Internet. She is resilient and courageous.

– A friend who manages depression and an anxiety disorder who reaches out to peers who are struggling. She leads support groups and is an editor for numerous newsletters. She has made a difference to many who are new to life with these difficulties.

– Numerous friends who reach out to people searching for information and support that are new to hearing loss. Learning to live in a silent world can be overwhelming. These folks make a difference – one person at a time.

How Do I Switch Gears?

Have you re-evaluated your own priorities – things that take your TIME – and discovered your disability or chronic illness is managing YOU? One of the best articles/posts I have ever read on this topic can be found HERE. Dr. Edwards addresses  “Re-engaging Life and Finding Purpose After Disability or Illness”. The 8 characteristics he outlines about those who choose to re-engage were very helpful to me at a point I realized my disabilities were managing ME.

The International Disability Center for Resources on the Internet has another terrific article written by Dr. Brown. You can access her article HERE. Dr. Brown does a fantastic job of helping readers discover what their purpose SHOULD be based on their desires, talents, and skills. She also addresses a number of challenges that may present themselves – but also helpful ways to negotiate those challenges.

What is your focus? What are your priorities? Do you want to make some changes? I welcome your input and value your own examples of how you chose to stop letting your disability manage YOU!

Denise Portis

© 2012 Personal Hearing Loss Journal