Category: Reality

Sisters

Recently I was accused of not remembering someone that I consider my big sister. She and I have been through so much together, my cancer, the death of both of our mothers, trips to the hospital with both of our sons, holidays, the death of my son, memorial services, and birthdays to name only a few. Last year during Covid she received a devastating medical diagnosis. It was so upsetting to me that I couldn’t go see her, as I have mentioned before I have immune deficiency. I have some tough precautions from my doctors, one of my precautions is about being inside around people. I shared that with her on the phone and I hoped she understood. We talked on the phone until she couldn’t do that, then we texted until her daughter told me it was too hard for her to text. Since then, it’s been silent, I miss her every day, but I feel anything she can do should happen with her family. I think about her every day, and I pray for her and her family every day.

I wanted to do something to help, but the only thing I could do was to offer resources and information I had from all the years with my son, but it wasn’t wanted.

A few weeks ago I posted on Instagram that it was National Black Cat Appreciation Day. I feel like there is so much darkness on social media, so I try to add some light. And the comment I got certainly surprised me. Her sister was upset that I could think of black cats but forget people that helped me when I was sick. I started crying; how could anyone think I would forget my ‘sister’. That’s impossible! I wanted to respond but didn’t think anything I had to say would help. I believe her anger comes from her pain, which is part of why I felt a response wouldn’t do anything to help.

I have thought of many questions since this happened, but the one I am left with is if she felt so strongly about this, why not just contact me directly? She has my contact info, or she could private message me on social media. I believe that question will remain unanswered.

Time

It’s a small word for a big topic

I hadn’t realized until I logged in today how long it has actually been since I posted.  If someone would have asked me, I would have said it was last month.  In fact, it was April when I last posted.  I took a minute to think about that, in some ways it didn’t seem possible, but in other ways it seemed like it could have been even longer.  I started to think about what has been going on since then and how I have spent my time.  This is a small piece of what life can feel like, time can easily get away from you or you can be too busy to realize time is moving on or some people just don’t pay attention to time.  I have been especially aware of time since my son was diagnosed with a degenerative condition, his life expectancy was limited, they didn’t think he would live past 16.  I had a friend that had lost a child and when she learned of his diagnosis, she told me to live life, make memories and take pictures.  And that’s what I tried to do with him, it wasn’t always easy, at times because of his health life would be on hold for a while.  But when we could, we went right back to making the most of our time.  When my son’s time ran out it was excruciatingly painful, but I had all those memories and pictures to hold onto and it gave me some comfort.  Still today my memories and all those photos are my most treasured possessions.

When I was diagnosed with stage 4 cancer I was once again reminded how precious time is and I made sure that every day my son and I spent time together.  After my son died, I had a recurrence of my cancer, it wasn’t unexpected, but it was still difficult to hear.  Once again, I was reminded of how short life can be.  This time I took a different approach, I decided that I needed to really think about the things I am willing to spend my time on.  That may sound selfish to some, but it is my time.  I continuously make assessments of what are priorities and what maybe doesn’t deserve my time and I make changes accordingly.  The events in life certainly change, or at least shift, your priorities and one of those priorities is time.

If I was to give advice, I think it would be this: Be present, live in the moment.  Don’t miss a chance to let someone know how you feel.  Celebrate, even the small things in life.  Don’t put things off, that just becomes missed opportunities.  Spend time with the people you love.  And most of all remember that time is a precious commodity, treat it that way.

The New Four Letter Word….Hate

Hate is nothing new, but it does seem to have reach a new level. It feels like hate has become a weapon, much like a blunt force instrument. People have always seemed to hate what is different or change or some hate just to hate. But now I see that level of hate is now baseline and hate today is so much more.

One current example of hate is found in politics. Now there’s never been a shortage of hate and anger in politics, but I see some that are so focused on hate and anger that they can’t see any other perspective. As I have written before, politics used to center around vigorous debate and exchange of ideas. And at the end of the day there would usually be some form of compromise. The greater good was not lost, now it’s hard to even find where the greater good is. And some don’t seem to care about it, they just want to spew their anger and hate. There’s certainly no shortage of hate in the new voter suppression laws.

Then there is society as a whole, there’s plenty of hate there. I am currently the target of hate in the community I live in. After my son died I bought a small condo and tried to start a life. I decided to run for the HOA board, I wanted to help keep the community nice and protect the investment I made. I knew the board was no popularity contest, but I had no idea it would get this bad. It has reached a point where lies have been spread about me, people who have been nice to me are silent or glare at me and yesterday I was harassed by someone I don’t even know. And a recall petition was filed earlier this week. Along with a letter full of defamatory lies. My understanding is that I will have an opportunity to speak for myself. I know nothing will change, but for me it’s important to take that opportunity, not that I have a great history of standing up for myself. But this time I feel very strongly about it and I think it’s partly about all the hate. I have come to the conclusion that I shouldn’t have been on the board, I am too kind and that is a trait that will get you run over by those with an agenda to win at all costs.

My next dilemma is deciding if I can continue to live here. I don’t want to move, but I also don’t want to live in a toxic community. I have stayed in most of today, I just want to avoid the situation. I can’t do that for too long or I will end up back where I started with my agoraphobia. I think I need to allow myself some time to regain perspective and get my feet planted firmly, there’s more fighting to get through.

I know I am too optimistic, but I keep hoping to see the better nature in people……

Standing Up To Life

Since October when it became clear I would have to give up some of my hopes and dreams I feel I haven’t been myself. I seem to lack focus and I have felt lost, defeated and frankly sad. There has been no shortage of tears. I have never considered myself a victim and I don’t want to start now. So after months and months of being in this dark place, I feel like I need to stand up for myself and look life in the face. I need to try and reconnect with my optimism, I need to channel a little Pollyanna.

This past year has been tough, I have felt isolated and very alone. But the one thing I had to hold onto was my hopes and dreams. They were my source of inspiration and motivation, especially with my agoraphobia. I would use them to motivate me to try harder, push further and most importantly, not to backslide. And sometimes they were just a bright spot in my day. It wasn’t about whether or not they would come true, although that would have been great, it was about believing that life can be better. That’s where I can tap into my Pollyanna. She has gotten me through some hard times in my life. But in the last few months she seems to be as lost as I feel.

I feel like if I don’t try to stand up and face life it is going to just run me over. It sounds so easy, but lacking focus and motivation is making it hard. Plus if you factor in the loss at the center of those hopes and dreams, it feels like a step hill to climb. So, I’m going to start to push myself and it maybe only tiny steps in the beginning, like in the beginning of therapy with my agoraphobia. If I’m lucky along the way I will find some other hopes and dreams, but they will never replace the ones I have lost.

Anxiety In Troubled Times

I have been wanting to write about the current events going on in this country, but my anxiety has distracted me. Today I feel like I can finally focus, so here I go.

Each of the last few years has felt more chaotic, more tense and more divisive. It feels like most people are angry, often I can’t even understand why or about what. I’ve seen society increasingly become more divided in a us vs. them mentality. It’s rich vs. poor, young vs. old, blue vs. red and if you don’t agree with someone you are wrong, with no discussion or exchange of ideas. Words can be powerful, but not when they are silenced. A lot of this has come from national leadership, that really influenced the us vs. them mindset. My experience in the past when it came to my country was that people have varying ideas and opinions that are based in their beliefs, life experiences, education and political ideology. And those thoughts and opinions were discussed, even with people that had different ideas. Sometimes there would be agreement, but sometimes that agreement was to disagree. Rarely would a discussion end with so much anger, even more rarely with threats. Threats were something that came from outside the country, from our enemies. Now it seems there is not a place for any discussion, any exchange of ideas. That’s sad! I have seen in the past where people of different backgrounds and beliefs could come together and achieve things for the greater good. This didn’t require anyone to change what they thought or believed, it only required them to see a bigger picture.

I hope that with the change in national leadership there will be change in the national conversation. Because there is nothing that says people have to change what they think or believe to be able to live and work together. Instead, all it requires is to accept each other for who they are. And in a country that prides itself for being free that shouldn’t be too much to ask.

Trying to Survive From A Distance

The underlying theme of 2020 for me has been survival. At the beginning of the pandemic it was survival of the fittest. The search for supplies, groceries and even toilet paper was challenging, especially when balancing the search with the precautions necessary for someone immunocompromised. I was able to get creative and manage to limit some of the risk. Then there was the first stay at home orders, I saw it as an opportunity to get things done around my house, and so I was ok with it…in the beginning. But I started to feel more and more cut off from friends and life. I got restless and frustrated and sad. And then there is my agoraphobia, I normally use my social connections to keep me motivated. I am concerned, without those connections I’m worried about backsliding. A friend came up with the idea of doing distanced lunch in my garage and my infectious disease doc signed off on the idea. It was great to feel some connection again. I have had a few visits in my garage. But now it’s cold and other people’s lives are moving forward, so visits have basically stopped.

Then came the first of the holidays, I have to say since my son died holidays are tough. But nothing like 2020, I was not only missing my son, I was alone with my grief, my pain and my loss. I tried to face the holidays, I tried to honor the memories of celebrating with my son. But the more holidays there were the harder that got. I finally just started focusing on work and ignoring the actual holidays.

The isolation became so hard I finally had a conversation with my ID doctor to see if any kind of social bubble could be safe for me. We discussed the people that I know and there was only one person she felt was safe for me to do a social bubble of one with. I was so excited!! I finally had the opportunity to see this person, movie night at his house. It felt wonderful to spend time with someone, it felt normal. But the ironic thing is now that person doesn’t want to see me again, so now I am back to being alone. I did find a way to write somewhere other than home, as I have posted before, I figured out how to work in my car. But the colder weather is sure to affect that too. I have tried to stay busy, I work on the book, I work on the business, I exercise, I run my errands. Some days I feel like I just go through the motions of life.

I celebrated my birthday alone, I did try to reach out to the one person my doc approved, but that didn’t work out. It was the worse birthday I’ve ever had. Before this my worse birthday was when I was on chemo. Then Christmas came, this one has really taken me down. But it’s a combination of things, of course there’s the pandemic, the increase in cases of Covid and the isolation, but there’s also so much anger and chaos in society and life. To try and help my own sanity I started baking and painting ornaments for small gifts. I felt like I needed to try and spread some kindness and even if it didn’t help others maybe it would help me. I creatively and safely delivered bake goods and the small gifts to friends and people I thought would be receptive to my small acts of kindness. But then after I did that I was just alone again. The actual holiday was hard, but I guess I survived it.

I was feeling very alone and lost this past Saturday, so I packed my laptop and went to the park to write, but I couldn’t focus on writing. Actually I just wanted to go home, so I did. When my son was having an off day I would change things, like what we were doing. I decided to try that, so I tried to borrow some movies I’ve really wanted to see from someone, but that didn’t work out. So I ended up just crying and feeling so lost and alone. It’s been interesting, the more I open up to people about how I am doing, the less I hear from them, which makes me feel more isolated.

In the beginning of the pandemic my worse fear was getting Covid-19, I was afraid I wouldn’t survive it. My docs confirmed that, they don’t feel I would have a good outcome. But the longer we are on this journey, this curve, I feel that mentally surviving is getting harder and harder.

Pandemic Rant

I have been working on a different post and trying to resist the urge to write about this, but I feel it needs to be written. As I write this my region of California has been put on a stay at home order due to the lack of available ICU beds. And in the days that have followed the availability of those beds is diminishing.

To give context to my rant I need to go back to the beginning of this pandemic. I have been appalled by the leadership in my county, or lack there of. I have seen a health officer forced to quit because of harassment and death threats after issuing a mask mandate. I have seen people get crazy angry over the wearing of a simple mask. I watched the board of supervisors of my county try to find a way out of the state mask mandate in the midst of the first surge. I have seen friendships end over differences of opinion about Covid. I have had people point and laugh at me wearing a mask in my car. I have been accused of being too careful, too concerned about the risk. I have seen people I know be diagnosed with Covid, and I know people that have died of Covid. I’ve heard an endless number of conspiracy theories. I’ve seen a lack of national leadership. I have seen individuals and some businesses defy the basic precautions to slow the spread.

With all that said, I have some questions. What is so bad about wearing a mask? I not excited about wear a mask, but since it can save lives it seems like a no brainer. I’ve heard people say wearing a mask violates their rights, I’ve thought about this and I don’t see it. It doesn’t silence your voice, it doesn’t interfere with your faith, it doesn’t take away your right to protest, it didn’t prevent anyone from exercising their right to vote. It doesn’t interfere with going to work or freely moving about. The people who have died of Covid have lost all those rights. And how many of them lost their life because of someone who couldn’t be bothered?

Now I hear the anger at this new stay at home order, and I understand, we are all ready for this to be over. But it’s not! I understand the frustration of businesses that are taking a hit in the midst of this pandemic. I understand they don’t feel it’s fair to have to close or have to change again how they do business. But on the other side, how many lives are they willing to sacrifice to have business as usual? As an immunocompromised person I am expected to stay home, I believe it isn’t until the last tier that we are invited to rejoin society. To me, it feels like I am giving up some of my freedom only to watch others make, frankly, stupid choices. On Thanksgiving I spent the day alone, as I have all the holidays this year, because it’s not safe for me to have close contact with most people. But I watched over the holiday as millions of people traveled and spent time with family, totally disregarding the advise of the experts. And why? Because it’s what they wanted to do, damn the consequences!! I hope that none of their loves ones get Covid.

And now at their most recent meeting the out of touch leadership in Orange County is once again trying to be excluded from a state order. They feel the stay at home order isn’t fair and that OC shouldn’t have to be lumped in with the other So Cal counties. They feel OC is in better shape, but the numbers don’t support that. Never the less, they are going to ask the governor to separate Orange County and let the county be responsible for dealing with Covid. This is a frightening prospect, I can’t imagine the governor will approve this request, I certainly hope he doesn’t. Then I saw on the news in the another state during a meeting of local officials there was one official who’s 12 year old child was at home and this official needed to leave the meeting because protesters were pounding on the door of her home. This is not right, yes there is a right to protest, but not to scare family members, especially children. I support the right to peacefully protest, by all means carry a sign, safely gather and even chant or yell, but pounding on the door of a private residence crosses a line, actually I studied law and that would be considered trespassing. And all this is again over a simple piece of fabric that when worn can save lives.

Please for the sake of your fellow human beings, please wear a mask, socially distance and wash your hands. And please only gather with your own household or your own social bubble. And if you feel compelled to protest, do so, but please do it safely and legally. Someone’s life literally depends on what you do.

Isolation is More Than Being Alone

I am still struggling with the new normal, which has no relationship with normal at all. I have tried to come to peace with being home, trying hard not to feel trapped, but I haven’t succeeded yet. Being alone isn’t always easy, fortunately having been an only child I do know how to be my own friend. My biggest problems are feeling cut off from life, the loss of social contact and the loss of human connection. I am hugger, I love to give hugs and I love to get hugs. It has been about eight months since I have shared a hug with anyone. I haven’t even been less that 6 feet away from any of my friends. It’s not normal, it’s not even natural to be so detached from other people.

As I have mentioned before, when my agoraphobia was at it’s worse I felt like life keep moving without me. And now I feel that again, although it seems harder this time, last time I still had Robby with me, but now it’s just me. And under normal circumstances I can deal with the fact I’m alone, mostly because I still had my social connections. But now there’s none of that, and I just feel more and more alone. It’s never been easy being immunocompromised, but I was able to find a way to live with it, but now it’s the barricade between me and life.

I have tried reaching out to stay in contact with people, but their lives are still moving forward, so that hasn’t always been very successful. I worry that the longer this lasts the less likely I am to reconnect or even catch up with others.

New Realizations…..

The topic on most people’s mind is the new reality, and it’s an appropriate subject. I think most of us are trying to figure out how to navigate the new reality, it’s certainly is not like life as we have known it.

For me it seems to also be a time to look at my life and see what changes may be necessary. Normally I wouldn’t take as much time to reflect on this, but these are not normal times. I have realized there are some things that need work.

The first new realization is I have a longtime relationship that I need to let go of, not an easy process. I haven’t talked to this person for a while, so I thought maybe I would just let it go that way. But then that didn’t feel right, besides I had some things I really wanted to say. I decided to write a letter, I learned that in therapy. I thought it would let me feel like I had said what I wanted to. I started writing and rewriting and rewriting until I felt like it reflected what I wanted to say. While I was working on the letter I wasn’t sure if I would mail, maybe writing would be enough. Once it was finished I decided to go ahead and mail it, which I did. It’s been about three weeks and I have been second guessing myself whether or not I should have sent it and whether or not it says what I think it does. I am the worst for overthinking things. But it’s done and there’s nothing I can do about, so I just have to let it go. If only it was that easy.

There are more realizations that I need to address, but I am going to take a break and do something else before I address any of them. This was a difficult process and not as freeing as I had thought it would be.

Life, Death and Perspective During A Pandemic

I think the pandemic is what most of us will remember about 2020. But for me, it will also be the year my brother-in-law died. He bravely fought stage 4 Glioblastoma cancer for 22 months, with all the dignity that cancer allows. He is caring, kind, compassionate and had a passion for life. Because of that, his career was a perfect fit, he was a psychiatrist at the VA treating PTSD patients.

I posted on my Facebook page about my brother-in-law’s death and I wrote that I will carry him in my heart forever, which I will. I got an interesting comment from a friend, she said it’s nice of you to say that, but she went on to say, most people just say that when someone dies. I thought her need to share that perspective was interesting. As someone who has dealt with a lot of loss, I’ve heard many unusual comments, but I usually chalk it up to people not knowing what to say. But this one felt more personal, like she was calling me out for how I feel and what I believe.

This idea of carrying loved ones that have passed with me is not something new, I have written about it before. I do believe that the loved ones I have lost are still with me and continue to move forward with me. I know that they are so much of who I am; good, bad and indifferent. I don’t understand how you could leave them behind, or why would you want to? As an example, there have been so many times over the years when I found strength in knowing my husband Robert is still with me, especially when things were bad with my son. In those bad times I would even feel someone touch my back and I believe it was him, that was something he did when he was here. I know that may sound crazy, but I do believe in signs.

As for my brother-in-law, I will be lucky to carry him in my heart, I would love to be more like him. I’m sure going forward I will continue to learn from him. I know there are many people who believe as I do, and probably just as many that don’t. I think it’s all about your personal experience and perspective.