Yesterday my blog reached a milestone. A milestone that I never would have dreamed of ever happening, let alone only after two and a half months. Yesterday my blog reached 10,000 page views. I never would have thought that my words about Bryon would go so far in such a short time.
So why do I do this? Anyone who knows me in “real life” would tell you that I tend to be a pretty private person who takes a long time to open up to people. I usually prefer to keep in interactions with people at the superficial level. Want to talk about the weather? Sure! Talk about emotions and feelings? No way! Before Bryon got sick, I kept all but a few people at an arm’s length.
So what has compelled me to share some of my most private feelings on the internet? If someone would have told me that I would be sharing some of my most personal thoughts for the whole world to see, I would have probably looked at them like they were nuts. But here I am. Sharing my personal thoughts in a place where anyone can see. I am not lying when I tell you that it is one of the scariest things I have ever done. I am most likely ruining my chances of ever getting a boyfriend (in the very distant future) because any potential suitors would likely find this blog during a google search and go running far away after reading this. And I can’t blame them. Run, Forrest, Run!
There are many reasons I pour my heart out on the internet.
I have barely begun to share most of Bryon’s story because it is still too painful for me to share. But I feel compelled to tell Bryon’s story in an effort to help other patients. I want to help people know how to advocate for themselves and I want to empower people to find the right knowledge so they can make educated medical decisions. I want to help people know what kind of questions to ask their doctors and what to do if something just doesn’t seem right with themselves or with the health care that they might be receiving. I want people to know why it is important to know their own health history and, if possible, that of their family members.
I feel compelled to share my story as a caregiver and an advocate because I want to help the family members and friends of the critically and terminally ill. I was thrown into a situation where one day my husband was recovering from a minimally invasive surgical procedure to fighting for his life in the ICU a few days later. I don’t think there is a word in the English language that could accurately describe how overwhelmed I felt during those weeks that my life came crashing down. I have a background in oncology data and oncology was one of the few medical specialties that did not play a role in Bryon’s care. While I had more medical knowledge than the average person, I am not a doctor or nurse and I had to quickly adapt to all the new medical terminology and procedures. Bryon also could not speak for himself while he was in the ICU and he depended on me to advocate for him. And unfortunately advocating for patients is not easy. As a caregiver, you need to be prepared to fight for your family member or friend.
I feel compelled to share my story because I want to help other widows and widowers. Widowhood is a very lonely place. It helps to read that we are not alone and that other people can relate. I appreciate reading blogs and memoirs of widows and widowers, especially those who are further in the healing process because I want some sort of idea of what to expect down the road. Since I benefited from the stories of others, I want to share my stories with the hope that it might help another widow and widower.
I want to share my story to help those who have gone through a trauma and/or have experienced the loss of someone important in their life. Grief is grief regardless of whether it was a spouse, a family member or a friend and we can all relate and support each other.
I write because it helps me process my own emotions. I was in the “widow fog” for several months after Bryon died and the fog didn’t start to subside until I started writing about my feelings and my experience. Before I started writing, I could bottle up my emotions and ignore them for a later time. This isn’t healthy. Writing forces me to acknowledge what I am feeling at any given time and it forces me to deal with my grief instead of ignoring it.
I write because I must preserve as much of our story for my daughter. She won’t have any first hand memories of Bryon and she will have to rely on the stories that are told to her. I can already start to feel that my memories are not as sharp. I feel a huge void that Bryon left but it’s getting harder to remember the little things. I am fearful that if I don’t write things down then those memories will die with Bryon.
I hope to become a patient advocate someday. I want to raise awareness for the issues that plagued Bryon and ultimately took his life. I want to empower the caregivers of critically and terminally ill patients. I share our story to meet others who have been in similar situations and have similar goals. I write with the hope that I can expand my network so that someday I am able to accomplish my goals of helping people.
Running Forward...My Way 
I only met Bryon a handful of times, but he made such an impression on me. He was lighthearted and hilarious. Bryon lit up when he talked about Maddie. I still remember the first time we talked about our kids and how daughters were both delightful and terrifying. LOL. When I learned of his passing, I was stunned. My first thought was of you and Maddie.
I remember encouraging Bryon. I have rethought and regretted that, hundreds of times since. Your words have made me laugh. Your words have made me cry. Your words have brought me comfort. I’m sure they’ve done the same for so many others. Kerry, I am truly thankful that you’re writing and sharing your story.
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Thank you Amanda. He mentioned meeting you and really liked you. It’s a shame we didn’t get to know each other until he passed but I am glad you reached out to me. ❤
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Wow. I understand all the reasons you write. It is so important for people to be active in their (or their loved ones) health care. The medical professionals are people who do a lot and have lives and often times it is very important to question what they are doing in order to make sure they are doing what is right. When my dad was in the hospital he wouldn’t let anyone walk in the room without explain what they were doing there and what they were going to do. And there were so many times when he/we had to correct them . . . . “no, she can’t have needle in that arm because . . . ” “no she can have it orally because . . . ” “no, the other nurse just gave her that med . . . ” You have to have someone that is watching and paying attention constantly. Not just for critically and terminally ill patients, just for ANYONE that is the hospital for anything.
Thank you for opening your heart and exposing your pain to help others.
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I totally believe it. This whole experience was a major wake up call for me. I know his case was extreme but there were so many teams working on his care and I swear they didn’t talk to each other. I had to correct them so many times. It just scares me that there are many people who don’t have someone in their family to advocate for them or if even if they have someone who wants to advocate, they may not know how to do it effectively. Maybe doctors mean well but so many hospitals are over capacity and understaffed and the patients pay for it.
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Yeah, it always seemed like there was no communication in my mom’s care, but I think what it really was, was that the people were just on “autopilot”, they came in to do a list of things without stopping to see what REALLY needed to be done because every person is different, they can’t just go off of protocol and do the same thing for every one. It was frustrating.
Yes, people might not have help or if they do, it is sometimes difficult for a non-medical person to stand up to medical professionals and say no. I mean a “civilian” is slammed with so much medical jargon and stuff it is really hard to keep up. So it takes A LOT to say, “No. That is not right.” Or “No, I need more information.” My dad did a good job though. He wrote EVERY THING (!!!) down so there was NO question ever as to what one nurse had done when another one would come into to do the same thing/or counteract what had just been done. The medical staff would sometimes be in a hurry and think, “Oh, I will note the chart later.” And that would mess things up, but my dad was always there with his notes. I think medical professionals mean well, but like you said things are over capacity. And they have so many hoops they have to jump through. And they probably get tired of trying to explain things to “civilians” . . . . and they are human, so there is just so much stuff. That is why advocates are so important.
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That is amazing that your father was so proactive.
The guidelines are the worst. I understand that they exist for a reason. I work in oncology data and I know that the guidelines exist to make sure patients get the proper treatment for whatever stage cancer they have. But my husband had major surgical complications and the doctors kept saying to me in a patronizing tone “well your husband’s case is complex” yet when I would inquire why they weren’t treating him more aggressively, they would say “Well they guidelines say this and we did it…” It was as if they were checking off a box. But I would get frustrated because if he was so complex, wouldn’t he need care that went above the guidelines? That is what upsets me. Medical guidelines should be a minimum, not an absolute.
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Exactly. That is exactly what I was saying. They just follow the guidelines/protocol without individual patient care. My mom was scheduled to die, I asked her how she was sleeping and she said just as she got to sleep every night they would wake her up at 4 am. And I asked why, and she said to give her an X-ray. Then I talked to the staff, asking why they are bothering to give a dying woman a DAILY X-ray at 4 am when she could be resting and their response was that it was standard protocol for every patient in the ICU. No thought as to whether the patient actually needed it or not. It was just something that EVERY patient in the unit got EVERY DAY! So asinine! It was easier for them to just do every patient then to figure out who actually needed it or not. Perhaps it goes without saying, but they stopped that on my mom. I kinda felt though that often times the bureaucracy kept some of the staff from being able to do the best they could / the best that was available.
I am sorry that you had to go through that. You are pretty damn strong to be able to post about it!
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That just blows my mind because with skyrocketing costs, why would they do procedures that are unnecessary? Yet other patients have to fight to get their procedures covered or done. I had to fight for certain tests to be done and the doctors would say “well the protocols…” At the same time my husband was just lying in a bed for months and not getting better. What would be the harm of another test?
So many inefficiencies in our healthcare system. It makes me mad.
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I don’t know. There are so many reasons it blew my mind. As you said, the cost . . . and then . . . why X-ray a woman scheduled to die? It just didn’t make any sense to me. Let her sleep in the middle of the night so that when her family is visiting she can be awake, not nodding off because you woke her in the middle of the night. We had precious little time left!
EXACTLY – so many inefficiencies . . . but it is easier for them to do it that way – cookie-cutter and follow the protocol – than to stop and THINK about what really needs to be done. Plus, that way, if they follow protocol and do everything cookie-cutter, they feel protected because it is “standard” procedure so when something goes wrong they just say, “Well, that is how we always do it.” It is crazy.
And that is why we go back to what we are both saying . . . one HAS TO HAVE an advocate . . . someone to help navigate the medical terminology and fight for the test and/or treatments that need to done.
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It is ridiculous. I used to work in an ER doing registration and preparing paperwork for admissions to the hospital. I did that for two years. I have been working in Oncology Data for the past 6 years. I have no patient contact as I am behind a computer. I was okay with that because it was hard to watch what was going on the ER. I saw many upsetting situations. Not as a result from the ER. People came in dying. And working there I had to desensitize it all or else I couldn’t function. And that is what happens. Medical staff become desensitized. I felt like I had to remind them on many accounts that Bryon was a human being. He was a husband, a father, a friend.
Have you ever read When Breath Becomes Air by Paul Kalinithi? He was a young resident doctor with a wife and infant daughter and he was diagnosed with Stage IV Lung Cancer. It is an emotional but fascinating read. He writes about what it is like to be on both sides. One of my friends is a Resident and he said he makes all the med students read it.
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Yes, I can understand how one kind of has to “turn down” their feelings in order to function.
Because the staff that was around when my mom died actually did seem really nice and caring, I tend to think that it is the bureaucracy that sometimes interferes. I actually believe that at times the staff WANTED to do (or not do) something, but they had to because of policy or protocol.
I have not heard about that. I don’t know if I could read it, it might just frustrate me.
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Sometimes I think my husbands nurses knew him better. I totally agree that it is bureaucracy and protocols. Also the concern as to whether the hospital is going to get paid by insurance.
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It sounds formulaic to say “I’m sorry for your loss,” but reading this and your About page, I genuinely am sorry–and you’ve given me a real and painful sense of how much of a loss it is. My good wishes go with you.
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Thanks for coming by Ellen! Unfortunately no one knows how this type of loss impacts you until it happens. And I obviously don’t others to be in this situation. I just try to remember that people don’t really know what to say and that they mean well.
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It’s true–we don’t know what to say. I find myself falling back on prefab phrases that, although true, have had most of the meaning worn off them by use.
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I just read your “about” page and had to be the 1000 follower! Such strength and courage-you are a true inspiration and I look forward to reading more of your story 🙂
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Aw thank you! I am glad to have you here.
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I’m so thankful I came across your blog. Being in a similar situation, a widow, and a very new blogger you have given me the inspiration to carry on with this this thing called blogging and I hope it helps not only myself in the writing but other widows who need an outlet to ‘speak their truths’.
I’m so new to this, its all scary…from setting up a blog page to actually finding the words to fill the space allotted and revealing yourself to strangers…thats just not me…and yet it seems to be.
It’s only because my hear my husband repeatedly saying “Find your Voice.Use your words” that I’ve embarked on this outlet. Thank you for sharing your story.
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I am so glad you are here but I am sad that you are a widow as well. Putting my thoughts out on the internet is one of the scariest things I have done but I wanted widows to know they are not alone. It has also helped in my healing process and I hope it helps with yours as well. ❤
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