I worked in service to people with disabilities for thirty-five years and then ironically became disabled myself when I was diagnosed with Multiple Sclerosis. I used my knowledge of the disability field to help navigate myself through health systems, durable medical to get the equipment I needed at home. All the decades I worked in the field gave me a great advantage over people who find themselves suddenly disabled.
I got my social security disability on the first try, which is rare. I didn’t want to go on Medicaid, as there was a two-year wait to get on Medicare. So I continued my former work insurance through Cobra and in the two years I paid 9800.00. As you know, if a person goes on Medicaid and in my case Oregon Health Care Plan, that your assets, when you die are cashed in and the amount that the state paid out for that health care they re-coup and take out of your assets. I wanted my long time 22-year soul mate to get the house if he survives me.
So I use mostly canes and walkers and a manual wheelchair when I travel on the ride source bus, I have chronic back pain and my right leg is partially paralyzed. If and when I would need home care, help with cooking, cleaning, self care it would have to be purchased by me through my only option, the “Oregon Project Independence” that sends helpers into people’s homes to keep them independent. This type of home care is relatively inexpensive, compared to the nursing or assisted living costs, and being one of the 10,000 baby boomers who are retiring every day, home care will save our government a lot of money.
So one day I started leaving out one of my closets and found a box all my old journals from the early eighties. I thought to myself “this could make a good story, and it’s funny too. So I wrote and published three fictionalized memoirs in ebook called “From the Waters of Coyote Springs”, “Felix and Eve” and “The Arrangement”. All three books are now available in the paperback book and is called “The Eve Chronicles” which tells the tale of a young woman who moves across the United States to Oregon and begins working as a forester in the remote Wallowa Mountains of eastern Oregon. She continues to Gold Beach Oregon and then the retired baby boomer buys a house in Eugene Oregon. I never would have found the time to write these books unless I would have gotten MS and had the chance to retire and one day when cleaning my closet came across my box of journals.
I have become an advocate for people with disabilities and post articles that ask for continued support for programs and legislation that will help people with all kinds of disabilities. I read all the information that The Arc, MS Society, and MS World sites have to offer me. They are my “go to” organizations that provide me with legislation alerts, that I send off to my Senators and Representatives in Salem and Washington DC. I post articles on several blogs then, every now and then; post about my book, hoping my followers on my blogs will buy my book.
I now have the time to do the advocacy I always dreamed of doing, as I was too busy working in the disability field. For twenty-years I was an outreach worker for disabled adults living in their own apartments. My job taught me the skills that I would one day need for when I was disabled myself. . I am able to navigate through the systems like social security and health care systems, because I did it for so long with my clients. They taught me how to be a survivor and how to lean on others when I needed to, and most important, how to ask for help.
I would say it was the change of a lifetime.
Thanks for letting me share my story.
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