Death – Marching In Place

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.

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.

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.

To Mask or Not to Mask….

I have been watching the debate over mask orders, which seems to include death threats for health officials that make the orders regarding mask and claims of a loss of freedom and constitutional rights. This issue is close to my heart as an immunocompromised person. But I am going to take a open minded/unemotional look at this issue.

First some general observations, I will use my county in California as my example, but I may also refer to my state as a whole. In the county where I live the health officer issued a order changing masks from recommended to required when businesses started to open. This was met with anger, protests and death threats against her. She ended up resigning, and then the order was changed back. Mind you every business, medical facility, restaurants, hair salon and nail shop require people to wear mask. This is not only their right to do, but is included in all the recommendations for reopening; CDC, state and local. Just about a week ago the governor issued a mandate requiring masks in response to the spike in cases we are experiencing in the state and specifically in certain counties, including my county. This has refueled the mask debate.

First lets look at the constitutional rights argument. I will try to look at the amendments that might be applicable in the interest of time. As for freedom of speech and freedom of assembly, I think that the very fact that people have gathered and protested the mask issue means there is no loss of freedom of speech and assembly. The press had covered this, as well as the other issues regarding coronavirus, so we still have a free press. And I can’t figure out how a mask could interfere with someone practicing their religion. Now some people may argue that a mask is cruel and unusual punishment, I’m not sure that would stand up in court, but I’m sure someone will try.

The other argument has been that the mask orders are an overreach of government. Since states have broad powers to protect the health and safety of the people, it would seem like a mask order would fit into that power. Lets look at the back story, researchers have been looking into the science of masks. Their studies have been focused on whether a mask protects the wearer and/or the people around them. At the beginning of the pandemic it wasn’t clear if it did offer protection, there was actually a lot of confusion on the topic. But as more has been learned about Covid-19 scientists and doctors agree that a mask does offer protection and is one of the few things you can do for protection. I’ve heard some doctors refer to wearing a mask as a sign that you respect and care for others.

I will close with my own conclusions about masks. First, I understand that no one wants to wear one, neither do I. For me I weigh it against the risk of getting Covid-19 and I feel like it’s a no brainer. It’s only a piece of fabric and it’s not forever, although it may be for those of us immunocompromised. I’ve heard some doctors compare it to the argument regarding seatbelts, that seems like a great analogy. Both are required for the purpose of protecting your health and safety. Seatbelts have certainly saved lives and severe injuries. In time I think masks will be shown to have saved lives. I will leave you with a question, what if we all wear a mask and this virus gets under control and we could get on the other side of this pandemic?

I don’t usually use this forum to take on issued like this, but it has become such a controversy and like it said it’s close to my heart.

Chaos, Confusion and Christmas…..

It’s been a long dry spell between posts, where to begin? Well, since my last post I celebrated my birthday in November, we celebrated a quiet Thanksgiving and I was busy sewing aprons, more on that later. Then I was in a curated boutique at a church, which brought us to all the chaos of Christmas. The normal chaos of Christmas was joined with confusion and deadlines. As I mentioned I was busy sewing aprons, this was something that started the Christmas before. I had made a couple of aprons like my Great Grandmother made and wore for a few friends that cook and bake. Out of that came the suggestion to make them to sell. I decided to name them for my Great Grandma, so I call them Gram C’s Vintage Aprons. I love sharing her apron legacy with others, she was a huge influence in my life. As it says on the hangtag on the aprons, she taught me how to cook and how to wear an apron. Christmas Day I was able to spend time with a very good friend and his family, it was wonderful. So much of the holidays is about family and I don’t have any family. I enjoyed being with his kids and their kids, it felt like Christmas.

Then came New Years, I don’t do resolutions, but I usual have something I am hoping for or hope to do. This year I want to limit the amount of negativity in my life. That sounds like a big goal, but it needs to happen. I am surviving with stage four cancer with a recurrence, the death of my son (my heart), the death of my husband, the loss of my family, agoraphobia, other health issues and my panic and anxiety. I think at this point wanting less negativity is a necessity.

The new year has brought with it more progress on the book, 15 chapters done and I am working on the last three. My hope for this year is to find a publisher. My goal to this point was to finish the book, I didn’t want to leave it unfinished. And now with the finish line is sight, I want to be able to see it published. It’s funny what started out as something I wasn’t sure I really want to do has grown into this huge accomplishment, I am so proud of this project and my hope has always been that it might help someone else.

For more information about the aprons please visit Gram C’s Vintage Aprons Facebook page. http://www.facebook.com/gram.c.vintage.aprons

Mile Markers and Grief

June 11th was the third anniversary of my son Robby’s death. This day comes 6 days after his birthday, that’s still hard to process. I find the special days like birthdays, holidays and anniversaries, are like mile markers on this journey called grief. For me, I find myself traveling along, then the anxiety kicks in, I realize the date and I know what’s coming. My most recent experience with this started in May, a month that brings my Mom’s birthday and ends with the anniversary of her death. This is followed closely by Robby’s birthday on June 5th and, as I mentioned, his anniversary on the 11th.

I realize that the term mile markers might seem odd, it may be. When I learned to drive being able to read a map was a necessity. Most people carried folded maps in the glove box, and/or a Thomas Brothers map book. An important part of reading a map was being sure where you were, that was the importance of the mile markers on the highways. I have found that on this grief journey there are times when I’m not sure which way I am going and a mile marker would be helpful. Then there have been times when it feels like there are too many markers and it becomes overwhelming. There is no map or guide book for this journey.

I have come to believe two things, one is as long as you are moving that’s enough. And two, the mile markers are love. It’s the love that helps lead us in the right direction. And I believe it’s the love that can help us survive this journey called grief.

Memories, Birthdays and New Realities

Memories are a funny thing, they can bring you great joy and can also represent great loss. Over the past couple of weeks my thoughts have been full of memories of my husband, Robert. I love the opportunity to get lost in the memories of our life together, but at some point the reality creeps back in that he is gone. When he died my grandmother told me that people will tell you that time heals all wounds, but she said that time just lets you find a way to live with it. She was right, he has been gone 28 years and I did find a way to live with it, but the pain of his loss is always right there.

Yesterday was my son’s birthday, the third one he hasn’t been here for, he would have been 34. I was once again this year lost in my memories, photos and videos. As always I posted photos on Facebook, but this year I included a video, it’s great to see the photo come to life. I had thought that maybe this year I would be closer to finding a way to live with it, but no. In some ways it has seemed harder this year. I ordered his favorite cake and I spent the day mostly alone, as I have the two previous years.

Which brings me back to the new reality, I am alone. That’s not to say I don’t have friends, I do and they have become my ‘family’. It was Robby and I for 25-1/2 years on our own after Robert’s death. I was technically on my own, but Robby was there. I find comfort knowing that Robby and his dad are together again and someday we will all be together. But for now I have to find a way to deal with my newest reality, being alone.

Random Thoughts and Updates

‘Random’ feels like an appropriate word to use right now. I have been feeling a lot of chaos in my life and that makes it hard for me to focus. Life with my son was very structured, and while I don’t need that much structure I have become use to it. The past few weeks have been……I don’t even know how to describe it!

First, was my struggle with Social Security, which caused weeks of waiting and stressing and holding my breath. I can update this one, I was approved based on terminal cancer, not the way I like to look at it.

Second, would be my car-talk about frustration and stress! After weeks of repairs, tows, getting stranded and complete loss of confidence in my car I took it to the dealership. They were able to get to the bottom of it, I needed to rebuild the engine. A friend had asked me about rebuilding the engine several weeks ago, I said no because I don’t have the kind of car that you rebuild. Well apparently that was wrong, so after 19 days in the shop, 12 days of a rental car and just short of $4000 I have my car back. It was shocking to me how I started to fall back into the agoraphobia mindset so quickly. I went from feeling trapped at home to not wanted to leave in a matter of days. Now I am trying to deal with the anxiety of ‘trusting’ the car again.

Third, on the 11th of April someone very close to me died. We have been friends for over 27 years. We have shared good times, bad times and survived more than a few challenges together. I met her about a year after my husband died at a painting class. I was struggling to deal with my husband’s death and she brought laughter back into my life. I admired her dedication to her family and her ability to overcome many things. It’s hard to believe she is gone, it feels strange and quiet. Lisa, I will see you later.

Finally there is my apron project. Last Christmas I made aprons for a few friends, that has become a way to hopefully make some money. My Great Grandmother taught me how to cook, and how to wear an apron. So I am making vintage style aprons that I hope will honor her and her memory. I have several ideas of how and where I might be able to sell them, but I have needed a car to move forward on that. I call them Gram C’s aprons and I have a hangtag designed for them and everyone comes with an old family recipe. I hope this idea goes well.

So when you combine all these things with daily life it makes chaos. So with some things resolved I am going to try to regain my focus and reduce my anxiety……we’ll see how that goes!

Oh Wait…Here’s Another Thing……

You know I am no stranger to the idea that life is hard. But then something comes along and I find myself shaking my head in frustration. My goal when my son died was to go back to work, I tried to make it happen before I sold our home, but no luck. Next my plan was to find a job after I moved, but then I was diagnosed with a recurrence of my cancer in the middle of moving. So now I have been left with a new reality, I need to apply for Social Security disabled widow’s benefits. This was not what I wanted, but if I have learned anything in life, it is that you really can’t always get what you want. So I started the process in January of this year and to say that it has been a struggle would be an understatement. I knew with the first phone call to make the interview appointment it was going to be a difficult process. The woman on the phone asked if my doctor had told me when I might die……did she seriously say that? Yes she did. There were so many things I wanted to say, but I didn’t want to affect my chances. So I came up with this response–I never asked my doctor that question….not too bad a response on the fly. Since that first call I have had my interview, had to defend my eligibility to apply, spent time trying to get info on the phone and several trips into the office. They told me that cancer cases like mine get expedited, but that has not been the case for me. As of my latest trip to the office this past Thursday, my case has not been assigned to anyone for the medical review and tomorrow it will be 5 weeks since the process started.

The additional stress of this is financial, I am running out of money. This is especially frustrating to me because I made some bad money decision by trusting the wrong people, I should have known better. But I can’t change that now. Looking forward, if a decision isn’t made soon I am going to have to sell my little condo and rent a place so that I have money to live on. The thought of moving cuts me to the core. The last move from the home where I raised my son and held his memorial service was devastating. But I had no choice and I feel like that is where I am again. I have worked to make my little condo feel like home. I have included my son here not only in photos, but he has a prominent place in the living room. I have a trunk with some of his special things in it, and everything else of his is packed in 8 big containers in my garage.

I know what I have to do, I need to stay focused and be persistent, I am. And I am normally the most optimistic person I know, but this just feels like one thing too many. I feel like I am fighting for my life and that leaves me with this question–does it really have to be this hard?

It’s Just Another New Year……

Well here we are at the beginning of another year. I wonder what this new year will bring. I don’t do resolutions, I gave those up a long time ago. But there are always things I am hopeful about at the beginning of a new year. There are the obvious things like good health, success, time with friends and family and happiness. There are other things I am hopeful for this year, I would LOVE to see my book published this year, I want to travel to Portland to see my family, I want to get my passport and make more memories with the people that I love.

The other thing the beginning of the new year represents for me is the beginning of another year without my heart, my Robby. I can’t believe he has been gone 2-1/2 years, it feels like forever and it feels like 5 minutes ago. There is not a day that goes by that I don’t miss my son, Robby. Now for the closest thing to a resolution I will make, this year I hope to find and understand my ‘new normal’. I know life will never be the same without Robby, so I have to make a new life, a new normal. That doesn’t mean leaving the past behind me, I carry my memories with me like precious cargo. It just means I need to figure out what my life will be going forward.

So I think I am ready to see what this year will bring…….hopefully ready.

Marching In Place

Living and Struggling with Agoraphobia

Category: Death