Insights From Kipling

Until this evening, I had never read Rudyard Kipling’s poem If in its entirety... I was, however, familiar with the “rewritten” version: “If you can keep your head while all about you are losing theirs... maybe you don’t understand the situation!”

Understanding my vision loss

I have been asked how I can be so calm about my vision loss. People tell me they could never be so sanguine about their condition if they were in my shoes. Sometimes they even imply there is something wrong with me! Maybe I don’t get what is happening to me.

I am very aware of what is happening to me. I understand my situation. And while, yes, there is probably something wrong with me, why, indeed, be normal?

I did have a “normal” bad time when first diagnosed. I did not, however, stay there. To what do I owe my ability to hike up my “big girl panties” and carry on to what has been a not half-bad life? Thank you for asking!

Like every positive thing that has happened to me, my adjustment had a lot of positive things come before it. Success breeds success. It also breeds a strong self-concept and a belief that good things are yet to come.

I believed I could and really could not see failure. I had no desire to stay miserable and every desire to get up and start moving.

Another reason I am not all that stressed is I have always been in good physical health. Being in good physical health means my vision problems are not confounded by aches and pains and limitations on mobility. Keeping as active and healthy as you can be is essential.

I knew the drill

Then there is the knowledge aspect of my situation. I was a school psychologist for 40 years. I had visually impaired students from time to time. I was friendly with the teacher of the visually impaired and I was aware of some of the services that might be available.

One of the first things I did after my diagnosis was reach out to the Bureau of Blindness and Visual Services for HELP! It is important not only for physical supports like electronic magnifiers and tablets but also for the emotional support.

Knowing you are not alone and others have walked the path before you can be priceless. I leaned on their knowledge and experiences to get me what I was going to need.

On top of the knowledge of where to get services, I also have always done my homework on macular degeneration (AMD). For example, I found out that I was not going big 'B' blind. The chances I would continue to have peripheral vision were good.

I found out dry AMD is slow-moving and I was not going blind by next week. While I found out the assertion that was no treatment and no cure for dry AMD was correct, there were perhaps hundreds of research projects underway to change those facts.

Staying strong with macular degeneration

I sought out and proceeded to mercilessly harass a retinologist who was doing AMD research. He finally got me into a study in self-defense! I am now DOING my part in the fight. It is amazing how fighting back can reduce your stress over a situation.

And what would Kipling suggest? Fourth stanza:

If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And to hold on when there is nothing in you
Except the Will which says to them “Hold on”.

Oh, yeah. Will. I have been told where there is a will, there is a way. Hold on.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).