A Rare Illness Gave Me Insight into Understanding Disability

I started my career as a high school teacher and eventually became involved in training and management, so I’m not shy about talking to a group, which is one of the reasons why I enjoy my role here at Freedom Disability. I have been a Lead Supervisor of one of our Eligibility Consultant teams in our Call Center for three years. What I do find difficult is to talk about when just a year into the job I got so sick I almost died.  And yet, I tell my story to trainees because I want to share how the experience gave me a sense of what it must be like to have a disability when you literally can’t do anything.

My Illness Hit Hard and Fast

I have never been sick in my life other than an occasional cold. So, it was alarming when I got hit so hard and so fast with a very rare condition. At first, my doctor thought I had walking pneumonia and prescribed antibiotics. But my symptoms didn’t improve and it turned out that an antibiotic was the worst medication to take for what was discovered to be Wegener’s granulomatosis in an advanced state, a very rare illness that attacks the immune system. Only one in 20,000 people get it. The scary thing is it is fatal if not treated properly.

When my doctor realized that I had this auto immune disease, I was rushed by ambulance to the Critical Care Unit (CCU) at St. Mary’s Hospital, Waterbury, Connecticut, where they washed my blood five times. The procedure is called plasmapheresis. Then I was placed on the steroid prednisone and was monitored very closely. I was in CCU for eight days and stayed in the hospital for two weeks.  I don’t remember too much about it. I’m told that my daughter read Harry Potter stories to me but I don’t recall that.

My supervisor at Freedom Disability, Evelyn, was amazing. She called my family every day to check up on me.  Jon, our president sent updates to the staff. Everyone was concerned for me.  I have never known such a caring group of people to work for. The attitude was just to take the time to get better.

The Miracle Man

During the worst of it I felt so useless, so disenfranchised. I could barely walk I was so weak. But I was determined to avoid a stint at Rehab, which is what the doctors wanted me to do to regain my stamina. Instead I went home and forced myself to walk up and down the stairs to gain strength. I think I helped facilitate my own recovery by doing this.  In total, I was out of work for one month. The nurses at St. Mary’s call me the “Miracle Man.” I am lucky.

Our Team Priority

I realize now that it’s hard to understand what it’s like to be sick until it happens to you.  I don’t have a disability, but I can better empathize with what people with disabilities mean when they say they feel useless because they can’t contribute to support their families.  I had a short but scary taste of that, and, as a group leader, I have made it a priority for my team to never lose sight of our purpose here at Freedom Disability – to help people who are in need of our services the most.

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