Reflections on what was then and what is now.
Before. Before was me, hitting the ground running every morning. Having my babies at home. Abundantly healthy. Going to the doctor every, maybe five years or so? Never getting sick. Never taking naps. Never ‘resting’. Widowed at 39, raising four kids, working full time, buying my own home, painting each room of it myself. All the gardening, all the maintenance: me. Taking my kids abroad. Traipsing through every inch of London. Every museum in New York. Walking, walking, walking. In graduate school for my Master’s. Never giving a thought to putting one foot in front of the other. Loving my life.
The middle. Numbness in one hand. Then the other. Ignoring it because…it’s nothing. Then numbness in my feet. Pain in my back. Soooo tired. Sometimes, I can’t empty my bladder. Surely this is my imagination. Feeling a spreading squeeze around my middle. Hard to breathe. Then hard to walk. Then…
The emergency room. Admission to the hospital. Bladder cath. CAT scan. MRI’s. Lumbar puncture. Blood taken and taken and taken. A diagnosis of Transverse Myelitis, possibly caused by Multiple Sclerosis. But, a condescending young neurologist bluntly says to me, at 50 you are too old for Multiple Sclerosis.
After. The neuro every three months, my GP every three months, a monthly infusion of Tysabri at an oncologist’s office. Tysabri, an immunosuppressant that can allow a fatal brain virus to get a foothold. Blood work every month. Ten daily prescription medicines (thirteen pills all together). IV steroids periodically to treat particularly intense exacerbations.
A cane. A walker. Even a wheelchair sometimes. No more hitting the ground running. Ha, no more running. No more traipsing anywhere. The beloved house I can no longer care for is crumbling around me.
Relentless pain. Disobedient feet that feel as though they weigh 200 pounds each. Constant fatigue. Muscle spasms that twist me like a pretzel. Twitching, jumping limbs and digits. Perpetual balancing: “If I do that in the morning, I won’t be able to do this in the afternoon. Which is more important? Which do I choose?” Because I can’t have both.
Anywhere I go I have to know, are there stairs? How many? Is there close parking? Is the bathroom nearby? Is there water so I can take my medicine? I have to think about literally every move I make. Or can’t make anymore.
Fear. Unremitting, unshakable fear. I am single. Who will want me now? How would I tell someone? Is this the day I won’t be able to take another step? Is tomorrow the day I won’t be able to get out of bed? Will I go blind? Will I choke on my next meal because I can’t swallow? Who will take care of me? Where will I live? How much longer do I have?
This is my new life. In four years, I have not yet learned to love it. But this is the only one I’ve got, so I keep trying.