Identifying as Disabled

Declaring oneself disabled doesn’t have to be all bad. Once you accept having limited abilities and turn your focus on what you can still do – which is often a lot – you might be able to relish having some time removed from the hustle and bustle of a stress-filled work life.

What does “disabled” mean, anyway? According to the US Social Security Administration, a person is considered disabled if they provide medical evidence that their physical and/or mental incapacity precludes them from working a full-time job on a regular basis.

I probably worked past the time I should have. In 2001 I quit a full-time job that was by far more demanding than 40 hours per week, and which involved lots of travel. I was frequently getting sick and although I earned a nice paycheck, the quality of my life suffered. For years after that I did contract jobs.

Some weeks I worked 20 hours. Other weeks, I had to crunch to meet a deadline and ended up working more than I had energy for. It took its toll on me in many ways.

Eventually, I realized to salvage the quality of my life I would have to learn to live on less and applied for disability benefits. It was emotionally draining to come to this awareness and follow through with the bureaucratic hurdles, but I do not regret it. It provides some peace of mind and allows me the opportunity to rest when I need to. When I replenish my reservoir of energy, I’m able to do things that help me remain attached and productive.

Don’t get me wrong, identifying as disabled takes some getting used to.

According to the US Census Bureau, nearly one in five Americans have a disability. That’s twenty percent. We’re in good company! That’s the largest minority group I belong to. But not all disabilities prevent someone from earning a living. I’m fortunate to have found ways to remain engaged, challenge myself creatively and intellectually, and feel as if I am still of service to my community. And when I need to, I take a break – an hour, or sometimes a full day – and disengage and refuel.


Planning for the Future

Recently my partner and I went on a road trip to visit a friend in Southern California. This friend – I’ll call her Debbie – was the first friend I made with a similar neuromuscular disease diagnosis (not DM). We met at a support group over 16 years ago. Debbie’s a few years older than me, but we share many cultural similarities so it has always been easy to relate to one another.

Debbie chose to move south for warmer weather, but within a month of her relocation she suffered a stroke that has left her fairly incapacitated. She requires round-the-clock care that is provided by an attendant found on Craigslist. As I understand, her minimal savings precludes her from some government subsidies, yet her savings will only last so long. She has limited family but a network of close friends engaged in helping with paperwork and decision-making.

Over the years, our phone and in-person conversations have been somewhat sardonic and bordering on depressive. She openly shared about her physical and emotional pain but still made great strides to exercise and remain independent. Occasionally we did talk about what our “comfort zone” might look like, i.e. at what point we’d want to throw in the towel or give up. I’ve always appreciated the opportunity to speak with her about this because most people don’t want to go there. In our society it’s rare to find a person openly willing to talk about their decline.

The night before our anticipated arrival I didn’t sleep well.

We arrived in town a few hours later than planned, and with my diminished energy I just couldn’t face seeing her. After a good night’s rest we brought a New York style brunch to her home. It took 30 minutes for her caregiver to prepare Debbie to see us. She could barely keep her head raised and wasn’t able to speak in full sentences. My partner and her caregiver took turns helping Debbie eat, adjusting the thermostat, and responding to her requests from a wheelchair that she could not operate herself.

After a couple of hours we left so she could go to a doctor’s appointment and – quite honestly – so I could process the situation myself. She cried as we were leaving and we promised to return in the evening. We did, and thankfully she was much more lucid as we sat at her bedside, straining to hear her voice while the television was on. It was not an ideal situation, but I saw glimpses of the Debbie I remembered.

I never was able to have the conversation with her that I thought we might have.

Her friends have told me she talks about wanting to die, but she didn’t bring this up with me. She moaned a lot during our first visit, reminded me of how much weight she’s lost, but never talked about the future.

I don’t know what Debbie’s future is. I know I couldn’t live like that, but who am I to comment on what Debbie’s definition of quality of life is? We all have our comfort zones.

What I CAN do is learn as much as I can and prepare for my own eventual death. As part of my personal and professional goals for 2015, I will be involved in preparing webinars and perhaps other informational materials about end-of-life care from a few different perspectives – legal/financial, palliative/hospice care, and the psycho-emotional issues for caregivers and their family. I hope you will join me with this exploration.

[originally posted: http://www.myotonic.org/planning-our-future]