I’m off kilter. I’ve been thrown off balance. My norm is rapidly unwinding, and I don’t understand the new norm much less the future.
My strong, independent husband, Rich, has suddenly been robbed of his outdoor vision, and his world is dissolving with it. He who lives for birding, photography and just tramping through the wilderness can no longer do any of this. Driving is out of the question. “I feel like a prisoner in my own house.” The couch is his “happy place.” There he can see, and feels safe.
Rich’s bird photography often takes him deep into the woods
I try to think back on the progression of this condition. It is astounding to realize that it manifested itself well over a year ago, in rapid blinking, more than normal. I didn’t see it. Rich didn’t feel it. But others noticed, and now comment on it.
Rich managed to cope with his degrading eyesight long enough for it to grow dire. Without knowing what it was or feeling (or perhaps acknowledging to himself) the progression of this condition, it continued, steadily curtailing his sight. His coping masked the advancement. Hid the impending decline. The suddenness came when nature tipped the balance. He could no longer compensate. He could no longer deny it.
Even so, it is hard to conceive of the gap in his capabilities between bicycle touring in Norway in August – which he managed, if with great difficulty – and today. The difference between being able to gut it out, and being paralyzed with fear. Shut down by sheer anxiety. Not being able to see at all.
The lightning speed of this life change is bewildering. If I am feeling ungrounded, what must Rich be experiencing? I can name many words. Depression. Frustration. Stress. Fear. Dread. Anxiety. A deep sense of loss. It is only slowly that I realize the depth of these feelings, and just how debilitating they are.
It’s just before Christmas and we walk down the block with Carl and Chelsea and their two children. A bagel walk, normally a fun outing. Rich walks ahead but seems to be faltering. I move up and grab his hand. His strong grip expresses his fear. He chokes back tears, confesses he is fighting off a panic attack. My fiercely self-reliant husband has been reduced to a dependent, sightless invalid I no longer recognize. Even though he did almost this same walk solo yesterday, today I wonder if he will make it. “It’s so much harder with people,” he says. “It shows me that I can’t interact with everyone. I have to concentrate 100% on staying on the sidewalk.” He manages the walk there and back. Says that holding my hand helped. That it enabled him to stave off the panic. On the way home, I can tell he’s reaching his limit. A simple walk does him in.
We navigate the medical world, seeking answers. Dry eye repeatedly comes up, but doesn’t explain enough. Finally, a specialist in the Cities nails the diagnosis: Blepharospasm. In short, there is a neurological miscommunication between Rich’s eyelids and his brain, causing impulses that tell his eyelids to slam shut. He cannot will them open. It is triggered by dry eye, light sensitivity, stress, cold and other factors rampant in our Duluth winter – hence his problems outdoors. His corrected vision is perfect. It’s just that he can’t open his eyes. He’s not blind, but he can’t see. Having answers is great relief, but due to the holidays and insurance requirements, treatment is weeks away. The wait is excruciating.
I can’t help but feel survivor’s remorse – guilt as I trot out of the house to go skiing, a passion of his. Guilt over being able to enjoy the Christmas lights he can’t see. Extreme guilt over wanting to be able to control my own life, which is inextricably woven into his.
There are so many ways to trip up. I can’t find something that is in plain sight, and thoughtlessly utter, “I must be blind.” Complaints about the car only remind him that he can’t drive. Even mentioning the weather is a trap. He’s stuck indoors.
Our lives are both transformed. Our collective future is unknown. Plans become moot, what was once routine is fuzzy. But we’ve also grown closer. We are far more in tune with one another, more thoughtful, more appreciative. Yesterday’s arguments and irritations melt into frivolous trifles. We’ve had to throw aside selfish wants for life’s realities. Compromise becomes easier, as does putting the other person first. We touch more often, reach out for one another readily, hungry for connection. A burning need to feel the love.
At long last, Rich has his first treatment – Botox injections along his eyebrows to deaden the nerves and stop the spasms. It is typically effective in over 90% of such cases. We are told it will be seven days before it takes effect. So the waiting resumes, but this time with hope. That makes a huge difference. This could rearrange our lives yet again.