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September 16, 2022

The Illusion of Dreams

It is impossible to overstate how profoundly my life changed one week ago at 6:30pm on Monday, March 14th, 2022.

Before that, I was living the best possible life I could have imagined. My wife and I had managed to retire to Fiji, the South Pacific paradise where she was born. We had sold everything in the US and bought a beautiful home on an acre of land that overlooks the deep blue ocean and is daily kisses by the southeast trade winds.

We had our blind but oh-so-precious dog Buster with us, and were slowly transforming this already special house and its land into our dream forever home. We extended the deck and put in an outdoor kitchen. We built an office where I could write and practice my ukulele in peace. We planted vegetables and hundreds of decorative tropical plants. We had countless plans and ideas for our little piece of paradise.

Every morning we shared tea as we looked out over the ocean to see what show it was going to put on that day. They were always different. Every afternoon we had tea of ice coffee on our deck looking out over the almost painfully beautiful scenery while the trade winds cooled us from the blazing sun. Fresh vegetable and locally produced meats made up our simple but tasty diet, all cooked with love by Soni.

I shared all this with my beautiful wife of 44 years. Soni was and is an amazing and complex woman. Brilliant, stubborn, loving, thoughtful, demanding, bitchy, brutally honest, difficult, and totally wonderful. I love her with all my heart and soul.

We had good neighbors (mostly) and were starting to make some friends after a year in our new home. It truly was a dream come true.

It was our dream, the one that we together created first in our heads and hearts, and then worked through countless challenges to make it happen. We had had a long way to go, and Covid time didn’t help, but we had made a great start in our first year in Fiji and thought we had years to continue building it.  We were so excited to wake up each day and continue building our dream.

Then, at around 6:30pm on Monday March 14th, my wife, my partner, the love of my life, and my best friend had a massive stroke that has left her paralyzed on the left side, with numbness in her face and great difficulty speaking. In that instant, the future we had planned evaporated like a puff of smoke.

It had started 2 weeks before, on a Saturday, at a funeral where she had gotten a bit dehydrated. Dehydration is always a concern in this climate so we always tried to make sure we drank enough and got our electrolytes. But that day was exceptionally hot and I guess we didn’t drink enough.

We didn’t think anything of it at the time. We drove back from Labasa to our home, and dog, in Savusavu with the AC running which we didn’t normally do. We drank water with a bit of lemon and sugar in it at home and slept soundly after a long day. She woke up the next day a bit tired, but that wasn’t really odd and we just kept working on our fluids and figured it would pass.

It did for me, but not for her. She got a bit weaker every day, and started having tightness in her chest and some difficulty breathing and sleeping. The Dr thought she had gastritis and prescribed stomach medicine but that didn’t help. By next Tuesday she was worse, and we went into the emergency room of the small hospital in the town of Savusavu where we lived. They found her heart rate was irregular and she had a small amount of fluid in her lungs. Plus a chest x-ray revealed her heart was enlarged.

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This time they prescribed a heart rate control medicine and one to release fluids from her body. The next day she felt a lot better, still weak but on the mend. That night she slept well and deeply for the first time in days. The next day the improvement continued and Saturday morning she felt even better. We thought we were over the hump with this, and smiled to ourselves.

Dehydration is very hard on the heart and can cause an irregular heartbeat to happen. An irregular heartbeat also causes fluid in the lungs, so it all seemed to fit. We had known Soni had an old heart issue that was going to need attending to at some point. We figured that, OK, this is the time to schedule and take care of this and started making plans for her to go to the US in May, when her Medicare kicked-in, to do that

Her plan was to fly to Australia that coming Wednesday to visit her mother and brother whom she had not seen in over 2 years. We had scheduled a visit with an Australian doctor for the day after her arrival just to check things out and make sure she was fine.

She never made it to Australia.

That Saturday afternoon, after having felt better all day she went in to take a shower. After the shower she “lotioned-up”, sat down on the couch, and went blank. I rushed her to the local ER in Savusavu (a pretty sad and desperate place) where they found her pulse at 180+ and irregular, with very high blood pressure, and excruciating pain in her legs. She had had a mini-stroke. They stabilized her and transferred us by ambulance to the hospital in Labasa, the “big city” on this island.

She was stabilized, resting in their cardiac care unit, and seemingly on the road to at least some recovery. Some clots from the mini-stroke were removed from her legs and she was fine. Until she wasn’t.

The next day she had weakened some. Her speech was worse, the paralysis remained, and she was tired all the time. She needed a CT scan to verify the stroke and tell us the extent of the damage. That couldn’t be done in Labasa as there is no machine so we decided to move her to a hospital in the capital. The hospital chartered a plane to fly her there and I told the pilot to maintain the lowest possible altitude for her safety and at 8am on Wednesday we lifted off.

In Suva, the CT scan confirmed our worst fears. Her stroke was major and had damaged or destroyed significant parts of the right side of her brain. She also had damage and blockage in the arteries on that side of the brain. There was swelling that, if it increased, could damage the other side of her brain and take away both sides and perhaps her speech altogether.

The government hospital in Suva was chaos. We spent 8 hours in an emergency ward teeming with people and noise. Doctors and nurses stretched beyond their abilities, doing the best they could but with too many patients. This was the worst environment for Soni and I finally was able to get her into a private room for some cool peace and quiet. These next 36 hours were critical to control the brain swelling and she needed to rest peacefully.

The next day, Thursday, I was able to get her transferred to a private hospital in Suva with better doctors, much better equipment, and round-the-clock care. It’s a pay-as-you-go hospital and we don’t have insurance that covers it at all so I had to pay out of pocket. But what better use could I ever have for our money? It was an easy choice. The best part is that I can stay, and sleep in the room with her to provide continuity with the care staff and security for her.

Over the next few days, she showed some improvement, slow and small but real. A follow-up CT scan revealed that the swelling had reduced and the damage was not quite as bad as originally thought, although still significant. Best of all, the doctor detected the faintest of movement in her paralyzed left leg giving us some real hope. 1,000 pounds came off of my shoulders at that moment.

She has had periods of alertness and is completely lucid during them, her mind is still there. As is her sense of humor She’s having food fantasies as they feed her thru a tube right now). She’s been able to talk to our kids and grandkids. She knows the situation and what we face, that it will be a long road to recovery but real, but not complete, recovery is possible. And she knows I will be by her side the whole way. I promised her that I wouldn’t give up on her and would be with her always. She promised not to give on me or us.

Our next step is to get her stable and strong enough to travel. By May, in six weeks, we want to fly her back to the US for a variety of procedures and care not available here. After that, we will see. Plans don’t always work out.

Two nights in the last week I lay down to try to sleep expecting to wake up as a widower, but then was gratefully surprised to not be. Fear haunts the back of my mind as I know she is at risk of another stroke at any time and that will be the last. I have averaged maybe 3 hours of sleep a night for the last week (I know I have to take care of myself, but it’s getting better) and have tried to eat and drink regularly. I shower.

To her doctors and nurses, I have remained calm, educated, and focused. I know more about her medical history and more of the details of her condition than anyone and have recited them dozens of times to ensure the caregiver seeing her now has the full picture. She can talk, but it’s hard and slow, so I speak for her most of the time. I am her full-time advocate, making sure she gets her meds, gets fed, and gets turned on time. That is my primary job right now, and I will not let her down. In truth, it is my honor to do so.

But inside I’m broken. My family and many friends are doing their absolute best from so far away and their help has been essential. But there is no one here to hold me and let me wail in pain on their shoulder. So I cry quietly in private moments or watch surprised as tears suddenly flow down my face as I talk to someone. My heart and spirit seem fractured in a thousand pieces.

Our beautiful plan for the future is gone with no replacement in sight. Yet. I don’t know if I will ever sit on our deck and gaze across the blue ocean or dig my hands into the soil of our garden. I don’t know when I will hug and snuggle with our dog again as he is staying with a relative back on our island. I’m sure he wonders where his mama is, and I miss him terribly. I don’t know if or when I’ll be able to feel my wife breathing beside me at night in our bed. I don’t know anything about my future.

I have realized again, and always really knew, that we never can know our future. We fool ourselves with our plans and contingencies, but they are only made of smoke. We are not in control, no matter how hard we try.

All I have is this moment. In this hospital right now, my wife three feet away from me resting in her bed with tubes coming out of her, and she looks so lovely to me. She held my hand an hour ago and told me she loved me. That has to be enough for me. I have to find the place in me where it is enough. But today, I dream of so much more.

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