Change of a lifetime: Diane DeVillers Copyright 2012
One of the best things that ever happened to me was getting Multiple Sclerosis. It’s rather ironic but I became disabled after working for 35 years in service to people with disabilities. But it's worked out well for me in the end because now I can be an advocate with a voice. Through the Internet, I can connect and represent with people in our state capital and in Washington. The squeaky wheel gets the oil so it’s where I begin my story.
I started taking care of other people as a nurse’s aid in a small town in Wisconsin during the '70s. I learned early the satisfaction one gets from helping others and I had a knack for understanding people in society who are sometimes forgotten. I was the voice that many of them did not have. After acquiring much medical expertise about the issues of the elderly and disabled I moved on to being a weekend house parent in a group home at a foster care home for 5 developmentally disabled adults.
I then took a 5 yr break as a forester doing timber surveys in the deep woods of Oregon and New Mexico. I spent the winters in the Alsea valley where I supported myself picking salal from the surrounding forests, which we sold by the pound to be sold to florists for floral arrangements. I also worked in the south as a tree planting crew cook and lived in tents and trailers in Tennessee, Alabama, and Georgia. I was the camp cook and made meals for tree planters who were very appreciative to come home from all that hard work to a home-cooked meal.
After a break from social services I longed to come back into the fold and I moved to Eugene Oregon and applied at the University of Oregon in the SLIP or semi-independent living program. I was lucky to be hired by a group of professors who had been instrumental in starting the exodus of people with disabilities moving from institutions to the community who needed support workers to assist in any and all skills needed to make it on their own in apartments and group homes. It was the return to my life's passion and I stayed twenty years in the field. I think because I never had any children, I displaced my maternal instinct to the 25 people whom I supported many of them came to be friends. I saw myself as a big sister who was around for moral support and to help them cope with the life outside Fairview, one of Oregon’s two institutions where people with developmental disabilities had for too long been incarcerated.
It is very ironic that I would one day be a disabled person myself. The people I supported have taught me the most about survival and how to adapt to the life of a person with disabilities. It was this deep passion that I had difficulties giving up, no was forced to give up when I became unable to continue my profession. This change was not a very easy one as I had grown very fond of each and every one of my people as many would call them. . It took two years of counseling to allow myself to see this transition as a gift and to let go of any bitterness I felt when I had to give up my life's work due to the debilitating pain and loss of the use of my leg.
This is how I got to take place where I had to start a new path for myself. I had been falling down since 1992 but went undiagnosed until 2006. I had kept injuring my leg and ankle by falling down and they had first thought I had sympathetic nerve dystrophy as my leg was slowing growing numb. First, my ankle and then my lower leg became numb and I was dropping my foot. I finally was told I had MS two years ago after I had an MRI and
Spinal tap to verify I had MS for sure. My first response to finding out I had MS was to feel sheer relief. Yes, relief to finally find out what was wrong with me. For nearly 14 years I kept falling and was having balance problems, was experiencing extreme fatigue and felt weird vibrating sensations when standing on the floor, much like a tiny earthquake was happening but no one else felt it. I also was extremely affected by heat so in the summer I experienced heat exhaustion. I was slowing losing function in my right leg. My foot started feeling numb and they first diagnosed me as having sympathetic nerve dystrophy. I got a brace on my lower leg to keep my drop foot from dragging and causing me to fall. I then went to using a cane, still experiencing dizziness and nausea, I continued on with my very busy schedule wondering why I was so tired all the time. Then on Oct 30, 2007, my life as I knew it changed. I hurt my right leg again and the whole leg went numb and no longer would work. I also experienced intense nerve pain in my back and sciatic area. The pain was debilitating and I could no longer work.
So now I can only walk with my cane for limited distances and use my power chair or manual chair to get around my house.
I know you are wondering why I stated in the first part of my story that MS has been the best thing that happened to me, but it’s true. My whole adult life I was an overachiever and worked long hours. When this disease started, I just kept ignoring the signs and kept working until the day came that I could not. I know that chronic stress is not good for MS but I just wouldn’t listen to what my body was trying to tell me.
Now my life is so different. It is all I ever wanted:
I am one of the few people who would end up crossing over from being a support person to being disabled myself. It’s rather ironic. But how could I complain, most of my folks had been disabled since birth, some living in their wheelchairs and working and coping with it all so courageously?
Now it’s not to say that I didn’t have an adjustment period, mind you, ending my life work after 20 years being the big sister to 26 adults. But the last 5 years it was brutal trying to keep up the pace, not to miss a meeting or a banking date, or a food shopping. My company offering to take some of my work away and give it to someone else, but I west able to accept it yet. So out of a sense of loyalty, I continued on, suffering inside, pulling my non-functioning leg around behind me and wheeling my 25-pound rolling backpack, to continuing being the outreach worker.
Now my life is bliss, I have no stress. I gave up so much but I gained a wonderful life. A wonderful time to write, submit my novels and short stories I wrote in the ’70s. I also bought an 80-gallon water tank and filled it up with soil and am growing lush vegetables on my driveway.
My companion, hero and beloved Mark; who has been at my side for 15 years, loves me completely and who now takes care of me. When I was first hurt and could not stand up in the shower, he got me into the tub with me and held me up so I could shower.
My beloved stands by me and will till the end. I cook him luscious meals and await his key in the door every night... I have no regrets; I love my new life, a life I never thought
possible. I was able to retire at 52 and I don’t have to work those long hours with the prospect of 25 more years to go... I have time for friends and family, I know who I am now and accept my life as it is. Every day I am thankful for what MS has made me into, someone who has the time to make that call, send that card out to someone I love. All the noise and distractions of the world are no longer in my life.
Then one day while cleaning out my closet I found my journals from when I first moved to Oregon, and as I sat there chuckling while reading them, I thought, “This would make a good book and started writing, well, now I’m a self-published author, my three eBooks are “From the Waters of Coyote Springs”, “Felix and Eve” and ‘The Arrangement” they are available on Smashwords and Amazon, check out my author page. All three books can now be found in the paperback book named “The Eve Chronicles” by Diane DeVillers. Here’s the link:
"From the Waters of Coyote Springs" is a fictionalized memoir that I wrote about the days I lived in the forest near Joseph Oregon where I worked as a forester doing timber inventories. Eve a self-reliant woman of the '80s striking out on her own from a failed marriage in Wisconsin. She lives in a camp with five other mismatched vagabonds who move from forest to forest as they survey the forests for the forest service. Eve earns her nickname "Queen of the comeback" from the way she holds her own in a predominately male profession. She spends the winter in the temperate rain forest near Alsea near the Oregon coast. And learns to open herself to love again.
"Felix and Eve" is about an elderly man in Gold Beach Oregon hires Eve as his live-in caregiver. Felix is recovering from open-heart surgery and Eve is between jobs and traveling up the Oregon Coast. What becomes a strange and wonderful relationship starts off rocky, to say the least. Felix is at first not very trusting of this young, carefree woman who seems to grate against his cantankerous spirit. The summer is spent just trying to adjust to having someone else around the home where Felix and his now deceased wife lived for fifty years. During the evening they play cards on the screened in porch and he starts to open up about his past when he worked for the notorious Al Capone during "the day" when Chicago was going through probation.
"The Arrangement" is from Eugene Oregon where the now-retired Eve, the baby boomer who receives a letter each year with a skeleton key, which opens a door on Catalina Island where she goes each summer. She leaves her property with a trusted friend Vinnie who lives in her back yard in a yurt. Vinnie is in love with her but remains silent. He's a Vietnam vet who experiences flashbacks and who tries to cope with a past that has its own ghosts.
My life is calm now, and I can now hear the wind blowing the leaves off the trees, the sound of rain, the touch of a friends hand, I have all the time in the world, something I never thought I would have in my past life of so much to do and feeling like I could never get it all done. The gift of MS is that it slowed down my life, and it opened my eyes to a whole new life,