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We were all tired, but I was determined to make Hartford that night. I began having a hard time seeing. For the last hour of the trip I had to get my wife to help me read road signs.
And so began my journey with MS. Typically, it started as something seemingly minor. I thought it was temporary. We didn’t even tell my parents during our visit. When we were home again, I sought medical attention.
“Optic neuritis caused by a viral infection,” the doctor said. The symptoms slowly disappeared within a month. Two months later the optic neuritis returned. “You have MS. I have referred you elsewhere,” the doctor said, as he spun his stool around to walk out the door.
My reaction was a mixture of anger at this doctor with the bedside manner of a wrecking ball, and fear—a terrible sinking fear that I was going to die. My wife was pregnant with our second child; all I could think about was two young children growing up without a father.
Fortunately, we learned that I was thinking the absolute worst. My eyesight returned, this time with help from steroids. But over the next several months I dutifully reported every quiver, twitch, and gurgle of my body to my neurologist. He cautioned me against focusing on every twinge of body noise. But as the family breadwinner I could not afford to be vulnerable again. My only plan was to rest. In my mind the MS could be managed, if I just got enough rest at home.
My wife soon saw a different picture. She became an avid reader of MS literature and decided that we needed to prepare for the worst that might happen. Would she be able to provide for our family? Would our doorways be wide enough for a wheelchair? Worst of all, she was alone with her questions, since I did not want to hear about these possibilities. Although I could walk and see and I appeared to function normally, she saw the real me who spent most of my time at home lying on the couch.
Seven months later our son was born, and with that tensions rose. My wife and I began to argue. As the months went by, our fights became pitched battles lasting well past midnight. They were followed by restless sleep and longer, harder days. I’d come home from work and collapse on the couch, wanting even less to participate with the family. We were beginning to spiral down that long dreadful path to the end of a marriage.
I thought she was trying to undermine my career. She thought I was in denial about my MS. At times my fatigue was so extreme my legs were wobbly. She wanted me to buy a cane. “But I don’t need a cane ... I’m fine ... I just need rest,” I argued.
And then something devastating happened. A close family member, the one who had what we thought was the perfect marriage, announced to the family that his marriage was over. A lightbulb went on in my head. “We’re in trouble too,” I said to myself.
I arranged for a week’s leave, and we went on one of our favorite vacations: a family camping trip to the mountains. There we had long talks, and almost no fighting. There I agreed that we needed counseling. My wife had been asking for this for months.
It took us 18 months after my diagnosis to get to this point.
The following week, we were on our way to a counselor. From the very beginning, the counselor provided a safe environment for my wife and me to speak our minds. He played referee and threw out new starting points when things bogged down. During our weekly sessions, we would lay it all on the table, point fingers, accuse, and fuss. As a result, the fighting at home stopped. After nine months I understood that my wife was not trying to ruin my career, and she realized my concerns about providing for the family. Once our trust was regained, we began rebuilding.
I learned that we could not depend on me to be the family’s sole supporter, but planning to leave a career that had taken me more than 14 years to build was hard to accept. I was an environmental geologist; I had earned college and graduate degrees; I had recently passed the final hurdle, the exams to earn a state license. I had acquired years of credentials. This was my dream job, but a lot of it was done at sites outdoors, involving long drives in all sorts of weather, and every day I was having greater and greater difficulty mustering the energy.
We decided that my wife would become the breadwinner. We did not want to put our children in day care, so we also decided that I would stay at home. We agreed that I needed to be productive. We looked at our options together.
Counting me, my wife, and her dad (who had recently retired), we had three master’s degrees between us and two neighboring houses that were pretty much paid for (my wife had inherited an old family house from her mother). None of us had business experience or training in marketing. But we decided to pool our resources to create our own business.
We all loved the outdoors but often had a hard time finding good guidebooks and maps on the Web. So we decided to open an online map store.
In August 1997, with enthusiasm, a detailed business plan, and loans taken out on our houses, we jumped in. To minimize expenses I learned Web page design. We hired an e-commerce consultant only to assist in setting up the more difficult shopping cart and credit card connections. We attended conferences, obtained licenses, purchased computers, and established office/storage areas in one of our houses. And after six months of development time, we opened Tamassee.com Guidebook and Map Store (http://www.tamassee.com). It now offers over 15,000 travel products.
I am no longer an environmental geologist. I now own a growing bookstore. Our old house has stacks of books in the corners, computers in the dining room, and shipping/receiving in the living room.
None of our big fears have yet come to pass. I have had no reoccurrences of optic neuritis, and despite other symptoms (“wobbly legs”, temporary double vision, and fatigue), I realize that things could be a lot worse. Perhaps managing my life has helped. Taking beta interferon for the past five years hasn’t hurt either—except for the needle.
By redefining our lives I can now be “down” when MS insists and our world keeps on functioning. My role in the business involves our long-term projects, so I can be out for a day or more and not hurt our company.
We make a lot less money than we did before, and most of what we own is hocked, but our marriage is stronger than ever, our children are happy and well tended to, and every morning I wake up with a purpose. I think this is as good as it gets.
|David Devoe’s interest in maps and hiking spurred creation of the Tamassee.com Web site. Frank Guldner, his father-in-law, a retired army officer and college engineering instructor, combined his skills to develop store operations. David’s wife, Frances, helped develop the store and now works elsewhere to ensure health benefits for the family.|
|Copyright © National Multiple Sclerosis Society, 2005|