Dave,
Some days announce themselves as battles. Others slip into your life with just enough symptom to remind you that your disease is always working, but not enough to knock you down. For lack of a better term, I call those ordinary days. Ordinary is probably a strange word for them. Compared with what has come before and what lies ahead, though, ordinary has taken on a new value, one I never expected.
Yesterday was not an ordinary day.
Yesterday was the kind of day that shakes you to your foundation. Symptom piled on symptom. None asked permission. None apologized. Each one arrived like an unwanted guest who refused to ring the doorbell. Hours passed as I negotiated with my body. Just let this one pass, even for a little while. Relief, when it comes, rarely stays long. So I lie there, or I push through, whichever way I know how. One thought stays with me, I hope tomorrow is better.
There will be another battle. There always is. Uninvited. Unwanted. At the disease’s whim. When it decides.
Then comes the in-between day.
This is where things get hard, because the in-between day is neither good nor fully restorative. It keeps the memory of what just happened in your body. The fatigue stays, and sleep doesn’t fix it. It also knows that symptoms will come back. You are not in crisis mode, but you haven’t returned to full strength either. You live in that uneasy middle ground, careful and guarded, like someone walking after a bad fall and testing each step before putting weight on it.
Still, something important happens in that fragile calm. You gather what you need for the next fight. Piece by piece, you put yourself back together. The in-between day isn’t a blessing, but it matters. It feels like a supply room between rounds, plain and necessary. You rest as much as you can, knowing it may have to be enough. Most of the time, it is.
That is the hard truth of living with a long-term serious illness. The disease shows up at the worst times. You plan a gathering. A vacation. A short trip you’ve looked forward to for weeks. You feel okay, though “okay” never lasts long and never means what we wish it meant. Then symptoms arrive without warning, like an uninvited guest who never learned manners. They don’t care about your plans. They don’t apologize. They take over the room.
I didn’t choose this disease as my life partner. It chose me, for reasons I still don’t understand. Somewhere along the way, despite my wish that it would disappear, despite every complaint, every worry, every sleepless night spent asking for a better morning, it became a constant presence in my life. I didn’t welcome it. I didn’t invite it. I had to learn how to live with it on my terms, in my time.
Now I just accept it as part of my reality. It shows up, causes chaos, and leaves for a while, and I don’t spend much time wondering where it goes. I stopped trying to make sense of it. What I hold onto is this, my life belongs to me. The disease is that unpleasant old companion who only knows how to make things harder. It rides along, sometimes in the back seat, sometimes taking up too much space, but it doesn’t drive. I do.
So I pay attention to the good days. I take in each one, not because I’m pretending the bad ones don’t exist, but because I know what they cost. Every good day takes work, and that makes it a victory. Every ordinary day is a small win. Every in-between day means I’m still here. I’m piecing myself back together, and I’m still living my life whether my uninvited companion approves or not.
If you need more stories and educational materials for people living with cancer and other life-threatening diseases, visit compassionatevoices.org.
The disease comes second.
It always has.
It always will.
Ron
