Sunday, June 25, 2017

Catch 22

Mark Johnson and I are supposed to be on vacation. And I guess we are on vacation, in that we do not have to go back to work on Monday. But we are not on the vacation we planned. We are not on the vacation we had hoped for. We are not on the vacation we wanted.

We started planning our vacation over six months ago when his daughter announced that she was going to Florida for ten days with her Mom and Grandmother for their summer vacation. That opened up time for us to take a trip of our own. We immediately starting looking at the map to figure out how far we could drive in ten days. We looked at a few options. Then I mentioned that I had never been to the Grand Canyon and I had always wanted to go. It was settled. We planned a ten-day road trip that included a visit to the Grand Canyon, as well as a bunch of other national parks.

Mark Johnson loves road trips. And he loves to plan and research every detail. Within a few hours, he had the route all mapped out. We would stop in a different city each day, starting in St. Louis, then Oklahoma City, then Santa Fe, and then the Grand Canyon. After that we would head up into Utah and spend two nights at Capitol Reef and wander around to see the Arches and a bunch of other parks. Then we would head home through Denver, then Lawrence, Kansas and finally Iowa City. We would arrive back in Cleveland on July 2nd. Just in time to pick up his daughter and head to the local 4th of July fireworks festival that night.

As the months went on, we started to fill in more details about the hotels we would stay in and the various sites we wanted to see along the way. We looked at restaurants and google mapped all of the cities. And of course, I started planning my outfits. I got some new sundresses and sandals, and a super cute tank top that I was going to wear to surprise him on the first day of our trip. It said "Not all Who Wander are Lost." Mark Johnson bought a few pair of new shorts and tee shirts. And he even got a new suitcase. I started collecting magazines to read to him in the car. And he started making our vacation playlist on his iTunes.

This was one of the best planned and most anticipated road trips in history. At least in my history. We were both so excited to take this trip. And the closer it got, the more excited we got. Every day we would talk about the feeling of being on the open road and exploring new places together. It was going to be the first of many epic road trips that we plan to take together.

Meanwhile, my Dad's health continued to decline. As the weeks passed and we got closer to vacation, I started to feel anxious instead of excited. I started to wonder about all of the possible scenarios that could happen while I was 2,000 miles away driving through areas with limited cell phone service. What if something happens to my Dad while we are gone? How would I get home? I don't fly on planes anymore, so we would be three or four days away by car. And would I really enjoy the trip if I was worried about my Dad the whole time?

Mark Johnson was having some of the same concerns. He has watched me struggle these last few months with visiting my Dad in the hospital and taking care of family issues in Michigan. He didn't want to encourage me to go on the trip and risk that something would happen while we were away.

Ultimately, we decided to cancel our trip and stay close to home. I drove back to Ohio and we opted for a staycation. That way I could be nearby in case my Dad needed me, but we could also get a little break and spend some time together. At first it was a relief to cancel the trip. That feeling lasted for about six hours before it started to sink in that we had actually cancelled it. When we woke up on Friday morning, the day we were supposed to leave for our trip, we both felt completely destroyed. It was like a small part of us, a little dream we shared, had died.

We have been in mourning ever since. I have been progressing back and forth through the first three stages of Elizabeth Kubler Ross's process of grieving: Denial, Anger and Bargaining. I think there was a moment on Saturday afternoon when I was in all three phases simultaneously. While Mark Johnson jumped directly into Stage 4: Depression.

The entire time I was thinking about cancelling the trip, I was focused on how it would feel if I left town. I never really thought about how I would feel if we stayed. Or how Mark Johnson would feel. I thought we would just hang out and do stuff around home, or maybe plan a local road trip for a few days. But when we started looking at options, we just felt worse. No matter what we tried to plan, nothing could make up for the trip we wanted to take. Anything we tried to do just felt like a consolation prize.

The thing about vacation, especially a long one, is that you tend to not plan anything leading up to it or after it. It is a defined crossroads in your life. There is your life pre-vacation, where you are busy planning and getting things done before your vacation. And there is your post-vacation life, which somehow you can't really contemplate, but you know it includes a whole bunch of stuff that you ran out of time to do before vacation.

After cancelling the trip we both felt a little lost. We looked at each other with this melancholy expression, as if to say "Now what?" We had planned to be on the road for the next ten days. Even decisions like what to eat seemed overwhelming to us. We were supposed to be wandering around in strange towns and discovering cool places to eat, not going to the grocery store.

Every day, I have been replaying the same argument in my head. Maybe we should have just taken the trip? Would we feel better if we had? But what if my Dad needs me? It is better to be here. No, it would have been better to go. It is a Catch 22. A no-win situation.

As I run through all of these scenarios in my head, I keep thinking about all of the sacrifices I have made for my family. And how Mark Johnson has made sacrifices too. I am the one who has driven to Michigan practically every week to be with my family. But Mark Johnson has never once complained about me missing out on events here. Or the fact that I have been away from him for more days (and nights) than I have been with him during the past few months. Or how it sometimes feels like we are putting our life on hold.

Instead of complaining, he has soothed me on long-distance phone calls and he has helped prop me back up every time I come home totally wrecked after dealing with all of the chaos in Michigan. And he has given me the strength and energy I need to go back and do it all over again the next week. Even though we both wish I could stay, he always tells me it's ok when I have to leave again.

For the past two years, we have always been happy together. Even if one of us was frustrated or irritated with a situation, the other one has been there to provide support and help make things better. This this is the first time in our relationship that we are both struggling. We are both sad that we had to give up this vacation, even though we know that it was the right thing to do.

It has definitely been challenging these past few days, but we are getting through it by talking and sharing our feelings and supporting each other. Being happy together is easy. And we are really good at it. Now we are learning to be sad together, which is probably an equally important skill set to have as a couple.

This morning, we were sitting out on our balcony and looking at the weather forecast out west. Record heat in Arizona and brush fires all over Utah. We would have been right in the thick of it. Then my sister called to say that they might have to take my Dad back to the hospital. Mark Johnson pointed out that if we had taken our trip, we would have been driving to Santa Fe when we got that call. That was the catalyst for both of us to transition into Stage 5 of the grieving process: Acceptance.

Mark Johnson is an amazing person. He is a loving and supportive life partner. He is my best friend. He deserved this vacation. We both deserved it. And I promised him that someday we will get to take this trip together. And many others. We just have to wait a little longer.

Friday, June 9, 2017

Slipping Away

Like many people my age, I have dealt with some losses in my life. And each loss involves some level of anticipation, preparation and grieving. All of my grandparents have passed away. I lost my grandmother on my Mom's side when I was just a child. At that age, I didn't fully understand what was happening. I have very scattered memories from that time. But the main thing I remember is that she was in hospice care in our house. She had breast cancer, back in the 70's when they didn't have a lot of treatment options. She passed away in a rented hospital bed in my brother's bedroom. I think I was about 8 years old. At least she was with us, and surrounded by love when she passed.

My Dad's father passed away years later. Probably when I was in my 20's, but I really don't remember a lot about that either. Of course I knew him, but we were not particularly close. The one thing I really remember is at the end, my grandfather was in the hospital and my Dad would go there and read books to him. I don't think I even went to the hospital, but I remember that everyone in my Dad's family thought it was so wonderful that my Dad had the capacity to read to him. Looking back now, I think my Dad did that because neither he, nor my grandfather, were great communicators. And a book was a comfortable place to meet and find common ground, without having to express any deep feelings or emotions.

My Mom's father passed away a few years later. He lived in Texas. For years we didn't have a relationship with him because my Mom's parents were divorced and he left when she was young. But at some point in my school-age years, he made contact with my Mom and they re-connected. He would come up and visit us each summer. I remember that he taught me how to drive in his old, beat up white car. Over the years, he maintained contact with us, but we didn't see him often. He was in Texas when he passed away. My Mom and Dad went down there so she could have some closure, but none of us kids went to the funeral. 

My Dad's mother lived to the age of 92. We saw her a few times a year at holidays and family events. I feel like I knew her to some degree, but with 13 kids and probably over a hundred grandchildren and great grandchildren, I think it was hard to have a close relationship with her. She was in failing health for awhile and we sort of had notice that she was close to passing away. The family held vigil at her house, with lots of the inner circle coming in and out. Our family was always more of the "outer circle" of my Dad's family. I didn't feel comfortable going to see her before she passed. I really didn't have anything to say to her. I was more sad for my Dad because he lost his mom, than I was sad for myself because I lost a grandmother.

Now I find myself in a completely different position related to loss. I am losing my Dad. It is not certain when or how. We really don't even fully understand his illness. All I know is that it feels like he is slipping away. He is recovering from his surgery, at least medically speaking. But there are so many things that are failing in his body. The medicine he is on to prevent him from falling makes him weak and tired. And he has a hard time getting around. The less he moves around, the more his muscles start to deteriorate. It is a continual cycle. 

It is hard to believe that a person can just start to fade away, without any doctor being able to help or do anything to stop it. And yet, that is exactly what seems to be happening with my Dad. There is no one to guide us along this journey. No one to tell us the projected course of his illness or how many months (or hopefully years) he will have left. Sometimes I have this sinking feeling that he will just be gone one day, without any notice at all. I wonder if he worries about that too.

No one talks about the potential that my Dad might die. Maybe because we are all hopeful that things will get better. Maybe because we are all afraid that they won't. Maybe because there is some perceived jinx or curse that if you speak of something bad, it will cause it to happen. But what if you don't speak of it and it happens anyway. Then you are left with so many questions and things unsaid.

Weeks will go by where I see my Dad and he seems about the same. Then a few days might go by and I will notice a sudden change in him. Yesterday, when I went to see my Dad, it was one of those times where he seemed to have a sudden change. I had just seen him on Tuesday (two days earlier) and yet when I went over there yesterday he looked different. Not only was he having more trouble walking, but his hands were shaking as we tried to play his favorite card game. And mentally, he seemed very confused and forgetful. 

Being around my Dad reminds me of being with my Mr. Big after he had his stroke. I know that he is in there somewhere, but he just doesn't seem like himself anymore. Even though the doctors say that my Dad is not having mini-strokes, because of his low blood pressure he is not getting as much oxygen to his brain and I think that is causing a lot of neurological damage. I feel like that is part of the reason for the sudden declines he is experiencing. But my perceptions are not medical opinions, and even with him seeing 12 different doctors, none of them seem to be able to see what I can see just by sitting with him for 15 minutes.

All of that leaves me feeling helpless. I am not sure what to do, other than just being present and spending time with him as much as I can. I've been trying to hope for the best and at that same time, prepare for the inevitable fact that some day my Dad will not be here anymore. And even as I spend time with him now, I know that part of him is already gone. And that is hard too. I miss his laughter. I miss his singing. I miss his silly jokes and stories. The same ones that he tells over and over. I miss my Dad already, and he is not even gone yet. 

It is hard to lose someone that you love. Of all the losses I have had in my life, none of them compare to this.