sad

My Uncle is Dying

| marandarussell

I’ve been really sad this week. Depressed too. I found out my great uncle is dying and has been put on hospice care. He has overcome a lot this past year, he had a stroke and then got Covid and developed pneumonia, but he recovered from both better than expected, but now he has some kind of heart/blood issue that they say can’t be fixed because he is simply too weak to survive any kind of surgery to correct the issue. Sadly, they can’t even grant his wish to go back home and pass away there, as he is in a lot of pain and they feel the IV pain relief drugs are necessary for his comfort since he doesn’t respond well to the pill form.

I have always had a special relationship with him. I spent quite a bit of time with him as a kid growing up. When we moved away when I was 12, he faithfully wrote me letters for years, letters that helped me through very rough times in my teenage life. I even chose him to marry my husband and I as he was an ordained minister. He was definitely the best example I had of Christianity in my life, and even though I’m not an evangelical Christian anymore, I still greatly respect the example he set of being kind and loving.

I don’t want him to suffer, and we have been worried about his quality of life ever since the stroke, but it is still hard to say goodbye. And so, I’m sad.

WordPress Played Me!!!

| marandarussell

Man, WordPress got my hopes up today and then just dashed them. I came to my blog site as I normally do and saw this on the side panel:

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8,974 followers??? Yesterday I had around 1,700!!! Of course, after the elation swept through me, my common sense kicked in and I wondered how I could have possibly gotten over 7k followers in one day, especially when my other numbers (post likes, comments, etc.) look about the same. So I checked my blog stats page and I’m still at between 1,700-1,800 followers. Oh well.

Thanks for the heart attack WordPress…and the letdown.

Celebrity Deaths

| marandarussell

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Today the world is mourning the loss of basketball superstar Kobe Bryant, his 13-year-old daughter Gianna, and 7 others who died in a helicopter crash yesterday. Personally, I am not a sports fan, so I didn’t feel much emotionally in connection to Kobe, although I empathize with the loss that his family, friends, fellow players, and fans feel, and always feel sorrow at the loss of children who barely got to live.

When celebrities die, I’ve often heard people complain about all the fuss they get. About how we act like they matter more than any other person who lives and dies. People complain about the adulation celebrities receive after their death, while “real” heroes like soldiers, firefighters, police officers, emergency workers, and others die without much recognition at all.

While I understand this sentiment, I think the reason that celebrity tragedies get so much attention isn’t because we truly think their lives are worth more than anyone else’s, but because so many people feel like they actually know them. If we are fans of their art or achievements, we feel a bond with them, even if we have never met.

I know I felt this way with Michael Jackson, Robin Williams, and Alan Rickman. I loved their work, their personalities, even their flaws to some extent. It felt like there was a relationship between us, even though there wasn’t. Thinking about their deaths still makes me sad because I miss them, just like I miss my father and sister who have passed on.

I believe this feeling can even occur with people who died before we were born. I feel like I know Vincent Van Gogh, Edgar Allan Poe, Emily Dickinson, and John Lennon in intimately real ways, when obviously I didn’t (unless I lived previous lives, but that is another topic altogether lol).

Who are some celebrity deaths that you felt deeply?

In Pain, Depressed, and Isolated

| marandarussell

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Sorry I haven’t written in a few days. I threw my back/neck out again and it has been bad. Probably the worst it has ever been. I have been constantly downing pain killers and muscle relaxers and still no change. Usually the worst only lasts a day or two during these flareups, but now I’m on day 3 and it still hurts to move in any direction.

Naturally, this has me rather depressed too. I had appointments and fun plans this weekend that I had to cancel due to the pain. I feel like it doesn’t matter how hard I try to be social or how much I try to take good care of myself, my efforts always end up jinxed.

This is why I normally end up isolating myself, because I feel like all my health issues make me unreliable. It feels like no matter how understanding other people are, when I have to call off at the last minute several times, they start to get frustrated (and understandably so).

I just wish this horrible pain would pass.

Complicated Mother’s Day

| marandarussell

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Mother’s Day always creates such a barrage of mixed emotions for me. There was a lot of trauma, abuse, mental illness, and foolish decisions that marked my childhood. My mother was far from a perfect parent. Luckily, she does admit to that and seems to be really trying to be a better person now, but being around her always triggers so many memories, thoughts, and feelings – some good, some bad, some funny, and some tragic.

I think part of the issue is that my brain has a tough time seeing how she acts towards me now and reconciling it with memories of how my sister and I were treated while growing up. I do believe in forgiveness (within reason), and I do love my mother, but I doubt there will ever be a day in her company that doesn’t create confusion for me internally.

I write this post today to recognize those of us who struggle on Mother’s Day to even know how to feel…

When Friends Say Cruel Things It Sticks With You

| marandarussell

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It is strange how negative words can stay with us for a lifetime and hurt long after they are spoken. Today, I was reminded of a conversation I had way back in middle school. My friends and I were having a conversation about birth order statistics and how the oldest is often the smartest and most responsible in the family – which apparently was the case in all their families.

I mentioned how that hadn’t really happened in my family as I was the youngest and yet I was the one in the gifted program, the one who got straight A’s, and the one who was least likely to break the rules. My sister was very smart in her own ways, but not overly academic or intellectual.

One of my friends (or more likely a frenemy) replied, “Well, maybe your sister is the pretty one then.”

Before I could digest this insult or respond, one of my other friends chimed in assuring the group that my sister was no looker either, which made everyone laugh. I didn’t let on that I felt anything, but inside I was crushed. I felt ugly and I also felt bad that my friends had insulted and made fun of my sister.

To this day, remembering this conversation makes me feel ugly, plain, and rejected. I wish my friends had been more careful with their words.

Bad TV Show Depiction of Ehlers Danlos

| marandarussell

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I love the tv show House. This medical drama, based around the character of a doctor with Sherlock Holmes mystery solving abilities is often smart, informational, and amusingly ridiculous. The main character (House) is often a total asshole, but he is so lovably grumpy, enormously flawed, and irresistibly outrageous that I can’t help but like him.

Last night I finally caught their episode that features an Ehlers Danlos patient, an episode I had been looking forward to seeing for a while. Unfortunately, I was really disappointed with the portrayal. First off, very little of the episode actually had anything to do with the woman with Ehlers Danlos. It focused more upon her husband for the first half at least.

When she was finally introduced into the storyline, she was presented as someone with a horrible mental illness (hoarding), which a casual viewer could easily think was due to her forthcoming Ehlers Danlos diagnosis. The last thing those of us with EDS need is to be confused with mental illness conditions even more.

Also, the only symptoms that are even discussed to be related to EDS in the show (and thus lead to the official diagnosis) are the fact that the woman’s heart responded badly to some medication and she had suffered several miscarriages. That was it. Yes, EDS can contribute to miscarriages, but it is far from one of the hallmark symptoms of many EDS sufferers. Nothing was mentioned about hypermobility, chronic pain, dislocations, joint issues, gastrointestinal issues, autoimmune issues, bruising/scarring, loose skin, etc.

Overall, a very disappointing experience as a viewer and EDS patient.