When Family and Friends Have a Chronic Illness — Part Three

August 21, 2013
What can you do to support a friend who has a chronic illness?

 

This is the third of four posts on a relationship I had with Ivajoy, a friend and colleague who is now 84 and totally blind. The posts are designed to show you the various phases that a relationship goes through when one of the people develops a chronic, challenging illness.If you have not read the first post in the series, I think you will get most from this posts if you first read Part One and Part Two.

ARLENE INTRODUCES THE FINAL YEARS OF IVAJOY’S LIFE

Bouquet of Mallows

In this post Ivajoy tells the story of her declining health. Then in the next post I will offer my observations on how I have experienced her these last few years and how I made a commitment I didn’t think would turn out the way it did.

In that concluding post I will also tell you how I think people can support family and friends who are dealing with a chronic, serious illness — without being as involved as I have been with Ivajoy.

IVAJOY TELLS HER STORY ABOUT HER DECLINING HEALTH

As often happens when we get older, our bodies break down in ways we don’t anticipate and my body certainly broke in a way I hadn’t expected.

As I said, the loss of sight in my left eye didn’t affect my relationships with friends, my therapy practice, or my driving. Even when I had a hysterectomy that turned out to be cancerous, I recovered nicely and was still able to drive and participate in activities with others.

However, things began to go downhill when an MRI found a small tumor next to the pituitary gland and my doctors decided to give me radiation treatment. As Arlene mentioned in the second post, I didn’t consider getting a different opinion and so didn’t learn that other doctors might have used another approach. In fact, one of my friends had the same kind of tumor I had and surgery successfully removed her tumor with no side effects.

Unfortunately, I gradually lost more and more sight in the right eye and never regained sight in the left. My world went from bright colors to gray to black over a period of several years. Every time I went to the doctors, they all said they had no idea why I was losing my sight. Some intimated that it was caused by the radiation, but MRIs showed nothing. In fact, I have been to more doctors than I can count and no one seems to know why this has happened.

My most vexing problem is that I am blind and do not know why! Maybe if I had been taught to question my doctors, things might have turned out differently.

In any case, eventually I had to sell my beloved Cadillac. It represented all the freedom I had enjoyed over the years and was one of the most traumatic moments I’ve had since starting to go blind.

At first, there was enough light coming into my retina that I was able to live alone with a helper coming in a few times a week. I could still take care of my own business with the help of an assistant.

It was during that time that Arlene did a great thing for me. She printed out my investment reports on legal size paper in a very large font. Since I had been doing a good job managing my investments, this meant I still had some control over my life, limited though it was.

Most of all, I could see clients — one of the advantages of being a therapist is that we can have clients for many years past the time when others have to retire — and I continue to work with one or two. This gives me a sense that I am still productive but it isn’t nearly the number I’ve seen in the past.

At the Mercy of Others

However, not being able to see has meant needing constant care. But that has also meant that others can take advantage of me and for a long time I found that some of my things — my favorite cups and saucers, clothes, bedding, etc. — were missing.

The problem was that I wouldn’t miss an item until long after it was stolen. But because I had different women taking care of me, I didn’t know which ones to blame, although I suspected it was mainly those who were hired through an agency. Now I have a group of five that come in throughout the week and I trust them. Nothing has been missing lately.

However, I feel particularly vulnerable and know this would not have happened if I weren’t blind, which adds to resentment of my blindness.

My Longtime Friend Dies

Unfortunately, about five years ago Olive died. I was devastated. No longer would I have those long phone calls that kept open a view of the world through the books and articles she read to me. Fortunately, after Olive died, Arlene began calling me every day, or almost every day, and that has given me a little of the connection with others that I need.

It was about that time that I developed breast cancer and had a lumpectomy. My twin sister came to visit me when I had the operation. However, one of my helpers heard her talking with a niece and she was saying that she wanted to put me into a nursing home.

I was very upset. Here was my own sister wanting to shuttle me off to a place where I couldn’t see clients and where I would not have the comfort and familiarity of the home I had lived in for thirty years.

I knew that her heart was in the right place and that she didn’t want to have to worry about me. She thought I would be well taken care of there. But after some soul searching, I decided I did not want her to be the executor of my estate, as she had expected she would be. Instead, I hired specialists who gave me assurance that, when I die, everything will be taken care of as I wish.

When she found out about this, she was furious. “I am your sister,” she said. “I should be the one who should take care of your affairs when you die!”

I suspect that her resentment in not being my executor helped create a shift in her relationship with me. Now when I call and she is at home she will have a very brief conversation and doesn’t seem to want to listen to what is happening in my life. When I leave a message, she can take a long time to return the call.

I miss the friendly discussions we had in the past. Of course, I realize my relatives and friends have their own lives and that I am not in the center of the circle of my friends as I had been. I am only on the periphery.

People Don’t Know What to Say to a Blind Person

I think people have a hard time knowing how to respond to a blind person. Not infrequently, their first reaction is to remind me that Helen Keller overcame her blindness and deafness. All I can think is that she was blind at the age of nineteen months and was taught by Anne Sullivan, a very talented woman.

Most people who are blind at a very early age have had a long time to adjust. I haven’t. I very much resent my blindness.

I don’t understand why people act the way they do and why they treat me differently than they did in the past. For example, one of my friends says she can’t take me anywhere because she doesn’t want the “legal responsibility.” She was afraid I might fall out! What? Someone may need to walk me to the car, but I am perfectly capable of keeping my seat belt snapped and can get in and out of the car by myself.

I don’t want to imply that no one comes to see me. I probably have three visitors a month. But I have to invite them to my home, seeing them only a fraction of the times I saw them in the past. Also, I don’t like the fact that I have to invite them. They will come willingly, but otherwise they don’t seem to think of me. I gather that they think it’s more convenient to come here than to go out. But I enjoy going to restaurants — even though I can’t see the menu.

Not long ago, my twin and my other sister from England came to my home for a rare visit. We had a great time and I thoroughly enjoyed myself. However, after they left here, they all went to a restaurant and continued visiting. Why couldn’t they have invited me? My helper could have come along and I would have enjoyed being with them for more than the three hour visit in my home.

Now I feel numb much of the time. I get more confused as time goes on. I suspect it’s part of the normal aging process, but it’s a horrible feeling when you have been so free and active all your life.

The Value of Friendship

I am extremely grateful for Arlene’s friendship. It is something I count on every day. When she hasn’t called, I will often call her. I try not to impose on her too much, but some days I just have to hear a friendly voice when the world has shrunk down to my small house.

Of course, I am grateful for the memories of doing things with others. I am grateful for memories of all the travelling I’ve done.

I am grateful for all the people who have recorded their books or lectures; for I spend most of my days listening to books on MP3s and discourses by philosophers like Eckhart Tolle and Deepak Chopra. But it isn’t the same as watching movies or TV. It isn’t the same as holding a book in my hand and making notes. It isn’t the same as reading a newspaper and finding out all the things that aren’t on the front page, the stories that I don’t hear on the radio.

I am able to accept many of my physical trials and tribulations, including a broken ankle a year ago when I fell getting out of bed. But I am particularly stressed by needing to have someone with me all the time. I panic if I don’t know where my helper is.

Who expects to go blind? I didn’t. Most people don’t. It is the worst thing that has ever happened to me.

See the next installment of When Family and Friends Have a Chronic Illness next Wednesday

Photo courtesy of Wikimedia Commons
Did you enjoy this post?
Here are a some related posts from this blog, and articles from the Support4Change website:

 

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