Where did everyone go?
I am lonely. Well not really, but sort of. Here is the thing, I used to be surrounded by people. Every day I talked to people on the telephone and like most American workers I lived with people who also worked at the office. I took and gave direction on multiple tasks, I was a bundle of energy moving from project to project, idea to idea. I was involved. But now, I am at best a bystander. I get to tune into the Today show and see people who are involved, trend setters if you will and it makes me jealous. Each time I tune in I remember, I used to be involved.
So what happened? Rheumatoid Arthritis (RA) happened. I suppose it was really the wear and tear of the disease, not the disease itself. I worked at a high but decreasingly efficient level for eight years after I was diagnosed. I was able to get myself to work, hit the move button and be on the go, eight, ten, twelve hours per day. I was defying the odds, and doing it with seeming ease at first. My biologic drug REMICADE® was the best thing since the invention of the automobile. Until, it was not. Then I passed through a series of other biologic drugs. Each lasting a year or less, I was burning bridges like no tomorrow as I tried in vain to keep up. Yet I pressed on.
Each month, my efficiency went down, but my will to work increased. Soon I was consumed by a cycle of naps, barley sleeping at night, and gasping for energy during the day. I decided, (to borrow a phrase from Neil Young), burn out and not fade away. I was well on my way to burning out and the sun was getting hotter. Then I hit the wall. In the end I did not call it quits, I couldn’t. I was determined to go on. In the end it was my doctor, my employer and wife who said enough.
I miss the barrage of ideas, and issues that I lived with for 30 years. I miss projects, deadlines and big problems. I miss working out the details, charting the course, and thinking about how the world might look if I was successful or if I failed. I miss the parade of issues, and ideas. Today it seems that parade has passed me by. I miss it all and I miss it a lot. I know I seem sentimental. But even being sentimental I have to say that I now know I was on my way to an early demise. RA simply consumed me. I was in deep trouble with my health and there was literally no way out besides stopping work.
Even as my work output declined, my effort to produce increased. At the end I was pushing harder, trying more and doing less. But it was work, and work felt normal and work sustained me. Then and (it felt sudden), I had to find a new life meaning, and frankly 5 years later I am still trying to find what that will be.
But one thing I do know is that I miss the hustle and bustle of work. I miss the telephone calls, interruptions, customer contact, and decisions big and small. I miss work, I miss laughter, and I miss hearing about weekends, kids, softball, vacations and plans. I miss it all, one might say I am lonely.
I do have people in my life of course. My wife Sheryl is now retired and we spend most of each day together. Having her with me at home is so much better than being home alone with no real purpose laid out. I have my grandchildren, who I get too see and I have my sons. Both of which I love more than life itself. I get to interact occasionally with others on the telephone. I like the days I can announce to Sheryl I have a ‘conference call’. These usually involve my efforts with social media and they usually begin and with others doing important work, while I am left to feel like I contributed to the idea.
Today I am healthier. To be fair I still have to take naps, I still cannot sleep well, and I still try to push. But even with that my blood sugars are better than they have ever been and I am more comfortable with RA. But still I miss it all, I miss the people, the laughter and the inside jokes. I suppose I am lonely.
So my mission today and for the rest of my life is to find new purpose. Find a way to interact and enjoy life without being on the path to burning out. Enjoy the people who are around me. I am on a mission to find meaning in what I do. Of course as always my main mission is to love my wife and family. I have come to disagree with Neil Young, it is better to live then to burn out. So in some ways I am fading away, or to look at it another way I am seeking ways to burn bright, without fading away.
- See more at: www.RADiabetes.com
Right now, what RA tips would most be helpful for you?