It's a universal impulse at this time of year to look back and to look forward. This week closes out the old year, and opens the new. It's the perennial Old Year/New Year reflection. Looking in two directions at once.
People who are chronically ill do this too, at least the ones able to think coherently enough for long enough periods. Some years, that wasn't me. Some years, I spent the weeks after Christmas in bed, sleeping chaotic hours around the clock. Dozing over an unread book. Staring uncomprehending out a window.
But not this year. This year I'm quite coherent, thank you. And I am doing the Old Year/New Year reflection.
We who are chronically ill ask many of the same universal human questions that healthy people do. Then there are other issues unique to us.
1) Was I happy last year? Will I be happy in the coming year?
If the year winding down has been rough, it can be hard to hope that something better will come. But ... hope anyway.
2) Was I healthy last year? Will I be healthy this year?
For some of us bad health has shrouded our past for more years than we can count. Some chronic lives have been like a Gothic tale of horror. A brand new year up ahead may inspire hope and anticipation, or fear of falling off a new precipice.
3) Have I moved ahead this year? Or have I lost ground?
I can rarely make a blanket statement as to whether life has been bad or good. I find it helps to look at different aspects of my life. And if anything has improved, my preference is to take that and fan its flames of hope, for all it's worth.
I've been viewed as being Pollyanna-esque or prey to wishful thinking. But I've already lost a lot to Chronic Fatigue Syndrome. I'm not letting it take anything more from me than I can help. And that especially includes my ability to hope.
4) What new things am I hoping for in the coming year?
Some of us with CFS are hoping for a doctor who is sympathetic and knowledgeable. We're all hoping that there will finally be more than just a small handful of devoted heroes who've been investigating CFS with little or no financial support.
5) Will breakthrough CFS research happen this year? Will it be made public?
Most of us feel left behind, medically speaking. Our illness is often maligned and dismissed, and money intended for research has in the past been diverted from CFS to other illnesses. We are cynical and pessimistic, for good reason. Paranoid? It's not paranoia if they're really out to get you — or to dismiss you.
6) Will the medical community change its stance about us?
We're hoping against hope. We're encouraged by the small groups of researchers who believe CFS deserves rigorous investigation. But after decades of bad press and being pushed aside, it's hard to hope.
7) Will a life on hold find the energy and the opportunities to get a toe-hold in the real world?
The isolation and poverty that often accompanies CFS adds substantial weight to its burden. For those of us fortunate enough to be recovering, the challenges of re-entering life are daunting, and often done alone.
8) Will anyone come looking for me?
This is an on-going question for most of us. It began when Chronic Fatigue Syndrome first flattened us, and sadly ... for many, it continues to be the cry of the heart which has never been answered.
9) Will the online CFS community continue to grow? Will there be enough who are too ill to stand alone, but are able to hold each other up and be heard?
We've been isolated a long time. Only since many of us have gotten online, have we felt a sense of community.
Our goals are small. We need someone to talk to. To be reassured that we are known, that we will not disappear without notice.
And our goals are huge. We're determined to get the research and publicity this illness should have. If there aren't enough groups willing to back us, we'll back ourselves.
10) Have I been loved? Will I be loved in the year to come?
Another cry of the heart. For many, the cry continues to echo alone in the dark. It is for this reason that I write.
A new year is upon us. My hope is that it will be a turning point for those suffering from Chronic Fatigue Syndrome, and that healing is around the corner.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.