myjourneysinsight

Link for lyrics, recordings and other stories: YOU ARE MY WINGS

I was determined to overcome my eye condition. Planning a trip seemed like a way to prove to myself that I was still able to enjoy life. I decided to go to Oregon, which was only a two-hour plane ride away. I planned to visit my friend, Sonia, who had moved to an assisted living facility in Portland seven months earlier.

It would also be an opportunity for me to meet the wonderful art directors I worked with. For the last three years I had received many terrific assignments from the Tillamook Cheese Company and their art agencies were located in Portland.

My 18-year-old son asked if he could join me. It sounded like a great idea; plus he knew Sonia well because she was a former teacher of his.

My post title is the first line from my song “You Are My Wings.” I recently sang a vocal for the new arrangement of that song, so those words came into my mind. Yes, I was glad I wasn’t flying alone!

Our flight left late at night. My son took the window seat and was excitedly snapping pictures after take off. Both of us agreed the city looked like glitter below us.

As I continue this post, I am going to intersperse comments from people from a dry eye support group I belong to on Facebook. Their words will be in different colors and represent many different people. My own words to the forum will be in black bold. The post began with one member voicing her worries about taking a trip with dry eye disease.

Since I don’t know anyone personally who has dry eye like I do, I’ll cry to you guys about it! I’m going on a trip with friends later this month. Normally it would be a fun trip and I’d be excited about it, but now that I have this dry eye thing I’m dreading it. This condition, which sounds like a mild inconvenience to people who don’t have it, is really having a big negative impact on my life. I know there are much worse things. I guess this is how it’s going to be from now on and I’ll have to adjust, but right now I’m still shocked at how debilitating it can be!

I completely understand. I’ve felt reluctant to take any trips away from home because of my dry eye condition. I like to “feel safe” and be home when the pain overwhelms me. It is one of the sadder realizations I’ve come to by having this horrible condition.

Our flight would arrive in Portland near midnight. My eyes were constantly bothering me in the airport; once my son and I were on the plane I closed them. My son was so excited and I was very happy he was with me.

I decided to listen to my music for a little while, but then I became very emotional and tears spilled from my eyes. It was embarrassing and I wasn’t sure if I was crying from joy or sadness. But I did notice that my eyes felt better after releasing those tears.

It’s a stunner, isn’t it? People have no conception of the life impact unless they’ve experienced it. The adjustment process is not easy but you will get there! Sometimes the mental challenge is as big as the physical one… that gradual shift from feeling defeated and limited to grappling and taking control, embracing the tools and strategies to make it through.

Your words echo mine exactly…the part about others not getting it really rings true.

The worst part is other people’s complete lack of understanding! If someone asks what’s wrong and I answer that I have dry eyes, they look at me like I’m stupid and say, “Why don’t you just put drops in?” I SO feel your pain
!

Our plane landed and my eyes hurt; I poured eye drops into them, hoping they would calm down. The fogginess and irritation were driving me crazy. I followed my son through the airport and prepared myself to drive a rental car.

During the plane ride, I kept digging through my purse, hoping I’d find an important piece of paper. It contained the gate code and room number where we would be staying.

Before we boarded the plane, I called my older son. He looked in my desk drawer and didn’t find it there either. I wondered how it had disappeared.

My youngest son squeezed my hand and said, “Mom, stop worrying about finding that paper. We’ll figure out a way in. Why don’t you just look at this as an adventure?”

With those words, I grinned. My son probably learned that from me!

I had an airport TSA guy question me as to why I had so many eye drops. After all, I was “just going to New York”. I fear running out of drops in the middle of a trip, so I carry a lot. But other than being prepared, don’t let it change your life too much. The people close to me understand now that I am capable of conversations with my eyes closed. Keep getting out there and enjoying life.

That’s why I love this group, full of people who understand exactly how crappy this condition is.

You must know that there are others like me who share your pain, I seldom go anywhere and don’t want to think about traveling for vacation.

We safely reached the facility where we would be staying. Someone let us in when we pushed a night buzzer. It wasn’t easy to determine the room where we were assigned to, but an elderly gentleman figured it out.

By 1:00 a.m., I was collapsed in bed and amazed that everything had gone smoothly. My son was right; it was an adventure.

I also realized that taking this trip with my son was joyful and that was the reason I had cried earlier.

I completely understand what you are going through. After dealing with eye problems for a year I finally went to the doctor; Severe Chronic Dry Eye was the diagnosis. So far, I haven’t found much relief, but being in this group has helped. You don’t really understand what it is until you have it, and then you can sympathize with anyone else who has it.

It might take a long time to feel better but it will happen. Don’t get frustrated. I know we have all thought that we’ll feel like this forever but things do change. And lately there have been a handful of new drugs in clinical trials that will hopefully be put on the market.

There were other challenges for me by staying at an assisted living facility. Everywhere I looked there were triggers of intense memories; only a few years ago I was very involved with my parents’ care. Now both were gone and that was still something I was adjusting to.

The next morning we looked forward to seeing Sonia. She gave us a tour and proudly introduced us to all the residents.

Meals were lavish and communal – at every meal there were different people at our table. So many stories could be written just from those mealtime conversations. I was especially moved when Sonia whispered to me, “That man across from you is the best son-in-law in the world. Every weekend, he travels quite a distance to visit his mother-in-law sitting there next to him.”

Then I found out the rest of the story. His wife had died of cancer a short time ago. He had promised her before she died that he would look after her mother. I felt tears welling up inside as I sat with them.

He was very friendly and told us places we could visit while staying with Sonia in Portland. On our first day, we drove to see a famous waterfall named Multnomah near the Columbia River Gorge. We were told over and over how lucky we were that it was such a clear day. Normally it rained almost every day in the springtime.

I used to not go anywhere, but then I started to face my fears about socializing with others. I think it’s because you never know how your eyes will behave and stress doesn’t help. Usually, I just say to myself nobody’s perfect. I just tell people straight out that I have eye problems. It has taken me ages to get to this point and I have a lot of anxiety.

I understand completely. This condition has completely changed my life. I’ve had to quit my job. I am doing some volunteer work now, but some days I feel so lost and alone. I miss the capable person I used to be.

I was very inspired by the beautiful scenery. Only a week ago, I discovered a few beautiful chords that I wanted to add lyrics to. Perhaps this was what I would write about.

Best of all, was seeing my son’s face as we hiked along the misty trail. He noticed I was taking a lot of close up pictures. He reached down to pick a leaf that had tiny droplets on it and asked me to take a picture.

Just get out; don’t let it stop you – don’t let it win. I am doing my best to travel and enjoy life with my husband at my side. He’ll hold my hand when I have to close my eyes because of the pain.

I’ve struggled a lot with the horrible dry eye cycle of sinking into hopeless depression – and having my eyes feel even worse when I’ve been discouraged. But I can say with complete honesty that I have good days where I accept this condition when it’s not torturing me. I miss the feeling of “normal” and probably always will. I guess this is the “new normal” and I’m grateful when it’s not like it was at the beginning! I cannot let go of hope and will continue to search for anything that brings relief.

Even though I couldn’t escape from my foggy vision or eye pain, I thoroughly enjoyed our drive and hike near Multnomah Falls.

We stayed with Sonia for three days. My son and I went exploring on our own the next day. I especially loved taking pictures at a beautiful Japanese garden. The koi were magnificent.

One of my son’s favorite outings in Portland was to a huge bookstore named Powell’s. While he looked at his favorite books I actually found one that I was excited to buy. The paintings of apples in watercolor were gorgeous.

On every outing my son kept asking me, “Mom, how are your eyes?” I appreciated his caring but felt sad because I knew he was constantly worrying about me.

After three days we bid farewell to Sonia. We decided to head out and explore the Oregon coast. The scenery from Portland toward the ocean was pastoral and I saw landscapes that reminded me of one of my first watercolor paintings. Then I remembered that my reference had come from a book about the Pacific Northwest.

Unfortunately, the drive was very tiring for my eyes. We were almost at the coast when we were diverted by construction and I became confused. Even with GPS, it was hard to find our way back and it added another hour to our travel time.

After looking at a few hotels, we found a comfortable one across from the beach. I was so grateful to collapse and rest my eyes.

I think what’s hardest is not being able to depend on your eyes. I am a visual person. The discomfort of the dry eyes changed my life so drastically. I used to be a fairly social person. Now I feel like a hermit. It takes such an effort to get myself out the door many days. I feel so lonely. And it seems that my friends and family have moved on without me. I’m so grateful for this support group. It keeps me going.

Your words made me cry – so true. I am also very isolated and get sad when I see pictures of myself with bright open eyes. I can see my eye pain in pictures now. But other people don’t really see or understand that pain. My eyes are foggy and uncomfortable – but I’m not impaired like other people are with this disease because I can drive and work. Still, the isolation comes from not feeling great about being out and about – traveling, going shopping etc. When my eyes hurt, all I want to do is retreat.

My son wanted to stay in the room. It wasn’t dark yet and I decided to walk alone to the beach. I sat on a driftwood log and watched young children dancing in the surf. Couples strolled by and dogs frolicked in the onshore waves. Soon the light became dim and it was time to leave.

After walking under the coast highway, I passed a grassy area. I sat down at a picnic table and texted my daughter. In the middle of our texting, she called me. I began crying when I heard her voice. We talked for half an hour and it was almost dark when I hung up. I pulled myself together and went back to the hotel room where my son was. He wasn’t at all worried about me, which was a good thing.

We all know this disease is horrible to the point that quality of life is adversely affected, even the ability to work. But worst of all, is the chronic pain, aching, stinging, burning that no one can understand. And the depression and anxiety that ensues because of the isolation and wearing down from constant pain.

The next two days, my son and I explored different beaches. He especially enjoyed a tour of the Yaquina Head lighthouse. Before heading back to Portland, we drove to Tillamook Cheese Factory. We were given royal treatment there and it was a most wonderful day. I plan to write more about Tillamook on my Art blog soon.

Your stories have made me speechless. This is my life as well. I have to pick and choose why I leave the house because I know it could very likely trigger a flare up. It has greatly impacted my income and social life but, most of all, the uncertainty of the next “flare up” and the isolation has caused me anxiety and depression. It’s priceless to connect with others who understand this.

I think you summed it. Our eye issues cause detachment from life – and I miss the connections I once had. But ironically, I have learned so much from this condition about myself. I use this word a lot – insight. I’ve searched deep within to discover empathy and focus on small blessings to keep myself going. This is a precious connection for me to know that others understand the pain that I deal with every moment of my day!

After touring the Tillamook Cheese Factory, I drove back to Portland through the Tillamook Forest. It was raining and my eyes were very concentrated on the road. After four hours we found a hotel near the airport that worked out well for us.

On the following day I planned to visit two different art agencies that I worked with on the Tillamook account. My son told me to go on my own because he wanted to relax in the hotel all day. I was slightly disappointed at first. But I didn’t say anything; the last thing I wanted to do was drag him along.

Being alone made me anxious because the streets of Portland were very complicated. It was going to rain and even though I had GPS, with my eye condition it was tough. But then I realized that I wouldn’t have my son barking commands at me. I could even sing in the car if I wanted to.

I took a deep breath and left myself plenty of time to get there. Everything worked out fine; I found the two agencies and even managed to stay dry somehow!

Meeting the people I had only spoken with was wonderful. I was so glad I had planned to do this.

When I returned to the hotel in the late afternoon, I was tired but energized. It was our last night and I surprised myself. I decided I had the courage to perform at an open mic in Portland. I grabbed my guitar and my son and I headed off.

The location was at a restaurant/bar and that particular open mic had been there for a long time. We ordered dinner and I signed up to play; I was going to be the second performer.

When my turn came I realized it was very different playing at a restaurant compared to Kulak’s Woodshed where I normally performed. It was so noisy that I couldn’t hear myself while singing. I was told I could play three songs and my son took one picture of me before I started.

The audience was warm and very nice. Later on, a woman came over to me and said, “You remind me of Joni Mitchell.” I was very touched and considered that a huge compliment.

We went home the next day and my son took a “selfie” picture of us on the plane. I was glad to be home and proud that I was able to travel despite my eye condition. The day after my return, I had an appointment with a top eye specialist and was hopeful that he might be able to help me.

It has been very hard living this way. I have definitely lowered my expectations about being “joyful.” I only want to live my life without constant pain.

During this trip, I ate far too much. I knew it was to numb myself and that it was not good for me. My awareness of that made it even worse.

But celebrating my courage is important to me. I continue to hold onto hope even though sometimes it feels like I’m losing my grip.

Seeing the beautiful pictures brings my smile back. And of course, knowing that my son will always have wonderful memories of our time together is the best part of all.