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Stumbles I’ve Learned From

Today we have another guest post from Arlene! Show her lots of love. =)

I belong to several professional groups just for members with a certain outlook, either contained within a larger group, or a separate one. These allow a bit of social interaction where certain words, terms and expectations are common to the group. I still belong to some wider ones – and sometimes I forget that not everyone knows how software works; other than what they hear on the news or have read about.

In looking over the groups recently, there seems to be an emerging awareness of identity and what we do with it – outside of creating, in some spaces, a personal brand around some aspects of that identity.

One of the people shared a link to Identity Stories, and I thought I might share a couple of my related experiences, in hopes that my awkward blunders would bring awareness to others. Or in some situations, at least a smile of empathy. And I’ve made many blunders over the years – along with a few things I did correctly.

One of the ones I handled badly enough to make me blush years later was at a local shop that I frequented. I had brought someone in there, and saw the new hire, with lovely long hair that I instantly envied (both thicker and longer than mine, which was only mid-back at the time) and made the assumption that this was a female. I admit it was bolstered by the fact that the owner had mentioned that he had received only two applicants, both female. I guess I missed this one – the greeting of “Hello, ma’am – It’s good to have you here!” shocked the young man, and it showed on his face when he turned around.

Recovery was slow – looking back, very much too slow. I spent a good five minutes mentally kicking myself for my presumption. Okay, to anyone else, it looked like I was hiding in a corner – and that would have a ring of truth, too. The truth that I had likely hurt his feelings finally came to the forefront of my mind, and I made my way to the front, trying desperately to rehearse what I could say to apologize. What actually came out was parts of three potential things: “I’m an idiot. I’m glad you’re here, and I hope you can forgive me.” None of which was put together, mentally, so I figured I’d failed.

And looking back, the only thing that would have been better was to have said something – anything – then, rather than wander off with my mouth open like an out-of-water fish.

I’ve done this since. I’m looking at a reflection of vested, hard-hatted, and dressed nearly the same construction workers – and one has a full beard – I still sometimes hold the door for “the gentlemen”, even if one is female. The last one that this happened with giggled at me – I had noticed this wasn’t a gentleman, looked horrified, and blushed. Which helped. I need to watch this: the season where workers are out and mud-covered has started, and I am trying to improve.

The one that still baffles me was a blind person with a cane. We were on a narrow temporary walkway while the sidewalk was being refurbished, and I scrunched up on the railing to avoid the cane. (That thing looked like it would hurt! And I didn’t want them to need to apologize for tapping me with it.) I still haven’t figured out a better response – if you know, teach me!

Located where I am, there are not always a lot of different people, nor languages, nor cultures that are obvious (which saddens me). Unlike some here, that try and force a conformity on everyone they meet, I do make an attempt to listen, and empathize as much as possible with people that are unlike me – which, if you think about it, is everyone. If you hear someone making a statement, presume that they do know what they are talking about – context is everything. And empathize. And don’t try and solve the issue, unless asked; they may trust you to simply listen, and let them work it out in their own mind. And now the hard part: be aware of this for a while – you may see it unspoken in other people.

I guess what I’ve learned over the many years is “Mistakes happen. Own up to them quickly, and try and do better. And don’t kick yourself for mistakes, once you’ve acknowledged them.” This applies to so many areas of life; I still have a hard time with this.

Recognizing differences can be a tough thing. Even something as obvious-to-me as the examples I’ve given here, might get overlooked by another, and be deeply effecting for someone else. This is a good place to apply the golden rule of “treat others as you want to be treated,” and take the time to learn from your stumbles.

Excellent and poignant reminders. Always treat others with respect and dignity, and if you aren’t sure how to handle a situation, or you stumble, don’t be afraid to admit it and ask for help! Love & light.

N.
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Help! Outlook Keeps Asking for Password!

Yes, my friends, occasionally the world of tech will spill into this blog as well. But this is not related to my career at all; this is something I experienced while helping out a family member. And I thought I would share the frustration — and the solution.

The Problem

He has a Microsoft account, based on a Hotmail address. There are 3 devices: his phone, an old laptop running Office 2013, and a new laptop running Office 365. He has some work email accounts, which all remained working fine, plus the personal email — that being the Hotmail account in question.

One day, he does.. something. Let’s say he forgot the password, or perhaps typed it incorrectly too many times. This leads to a slight spiral of confusing actions, involving a password reset and a recovery code, which he faithfully, per instruction, prints on a physical piece of paper (not that we ever needed it). However, something is still amiss.

downward spiral staircase
down, down, down we go!

Outlook 2013 is now continually prompting him for his password, for the Hotmail account. Strangely, also, this old machine still lets him log on to Windows with the old password, even though it’s running Windows 10 under the MS account (not a local user account).

His phone still receives and sends emails just fine — he didn’t even have to re-enter the password there, as far as I know. Also strange. Or perhaps he did re-enter it at some point shortly after he re-set it, but forgot to mention it. Who knows. The point is, he can’t get his personal emails in Outlook anymore, on the old laptop.

Nor the new one, as it turns out. He just hadn’t tried it until I got there. So during my troubleshooting efforts, we turned on the Surface and discovered it, too, in Outlook 365, continually begged for his password, which we of course entered correctly, to no avail.

I tried a lot of troubleshooting, including repairing the account in Outlook’s account properties, removing it and re-registering it, and even removing it from Windows entirely, followed by setting it up again. None of that worked of course.

The Solution

The actual solution is rather boring, as it turns out. It just took us forever to arrive at it, because MS in no way made it at all obvious, nor provided any direction toward it, until I actually asked for help with Outlook’s support-chat snap-in. The agent replied next-day, which meant I had to tell my uncle to literally let his Surface sit out, open, on, logged-in, all night. Thank God for TeamViewer, is all I can say.

What we found out, thanks to the agent, is that he (the user, not the agent) had somehow enabled Two-Step Verification. This was NOT OBVIOUS anywhere. What it means, apparently, is that after you enter your password, you’ll need a security code that either gets texted to you or uses the MS Authenticator apon your smartphone. This is very similar to Two-Factor Auth, but not exactly the same.

red apple and green apple
Apple-to-apple…ish

So where do you go to check on this? Again, not obvious. Go to your MS account page in a browser — https://account.microsoft.com/. Then click on ‘Security’, of course. Then.. uhh.. wait, there are only 3 big buttons here. “Change password”, “Update your security Info”, and “Review recent activity”. Well those don’t sound like what I want. Maybe the 2nd one, kinda? Nope.

Read the fine-print. I mean it’s not “fine print” like super-dinky legal jargon, but small enough compared to those big 3 buttons that most people would overlook it. Right underneath it says this:

Done with the basics? Explore more security options to help keep your account secure.

MS Clippy

Yep, there you go. Once you click that link, ‘Two-step verification’ is the 2nd option on the list. So, once we disabled that, he was back in business — his current (recently changed) password was now the only thing needed to configure/re-connect all Outlook apps to his Hotmail account.

But Why?

More specifically, why is this a thing? Well, 2-factor authentication is actually a very good practice, security-wise. For example, when you log in to your bank’s website from a computer that you don’t normally use to do so, they generally want to text/call/email you with a “security code” to make sure it’s really you. Awesome! That means if someone guessed your password, they still couldn’t get in, because if you got that text/call/email while you yourself weren’t logging in to do some banking, you’d say “Not today, Satan!” and deny that sucker.

Now, let’s take the Microsoft account. Sure, it probably has some pretty important stuff — billing info, for one thing, if you’ve ever bought anything from them, like Office 365, or a game on the Xbox. But even if not, there’s still a lot of your personal info there. Plus, your email itself can be used for nefarious purposes, such as.. oh right, that banking example! If you hadn’t set up your phone as a “2-factor auth” contact-point, they might be using your email to send you those security-codes. And if you’re no longer the only pair of eyeballs on your inbox.. Ruh-roh.

scooby-doo ruh-roh
Jinkies!

So is this “Two-step verification” thing with your MS account all bad? No, of course not. Like anything, consider it holistically with the rest of your online presence and identity management. If you’re particularly worried about hackers, and you understand the trade-offs, go ahead and use it. If you’re fairly confident in your password strength, and you don’t have a ton of ‘risky’ information/connections involved in the account, maybe it’s overkill.

I personally use the MS Authenticator app, because I work in IT and it’s something I’m accustomed to. I have a lot of devices, and I know that the risk of me losing one is higher than most. But this family member’s situation is much more limited and much simpler. Therefore, we decided, he can live just fine without it; all he needs to remember is his password.

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A Grief Observed, part 7

This will likely be the final ‘official’ entry from my grief journal. The number seven has some special significance, so it seems a good place to put the final post. I will of course continue to journal privately, and to work on other forms of writing, such as stories and anecdotes. For those of you who have read this far, thank you. I hope that it has helped you in some small way. Love and light to you.

The Wake

Family gathers at B’s house afterwards. I eat something, a relatively bland sandwich. I wish someone would have brilliantly thought to bring in La Costa, but I supposed that could be expensive. Still, it would have been nice to have some of their chips and salsa at least. Oh well. Someone from my mom’s side of the family snuck in Fireball whiskey. Yeesh.

The flowers are still so pretty; we all brought them over from the funeral. Your mom is going to make some kind of smaller arrangements and things with them, perhaps even something involving dried petals, so I overheard.

My side of the family decides to head out to a local bar, and makes sure that I know they want me to come along. So I stay with yours for a while at B’s, then head over to State Bar in Redlands. It proves a bit difficult to find, mostly due to the parking situation and the fact that today is Thursday, Farmer’s Market day, which I totally forgot. But I find them anyway with K’s help. They shove food and some alcohol at me when I get there. Which is probably a good thing, considering how little I’ve eaten recently. Although I do get pretty bloated later.

I drive myself & Z home. K decides we need more alcohol. So we run to the store to pick up that plus a few snacky things. Then we play Shanghai. I may have won. Time is so strange now. It seems like it should be hours later than it is, but the days get lost or skipped in my brain.

The remembrance cards are so pretty. I love that your mom did those all herself. With D’s help maybe? You were such a graphic designer, I’m sure you could put ours to shame. I know that you’d be highly disappointed with my slideshows just for the lack of collages and variety (and general picture quality, perhaps). What could we do? You were taken away from us without warning.

a million words would not bring you back

 

 

The Days After the Memorial

Now the days get worse. I ache, I feel unrested. Parents try to make a nice breakfast but I can’t eat too much. Still, I try. 

Sleeping, actually doing better now. The dogs still wake us all up at 6 or 7, but at least I can go back to sleep without a second pill. The house gets warmer than I’d like but I still have to have your Unicorn blanket on me. 

Saturday morning I decide to join the parents in their ritual of Starbucks and Great Harvest, with their dogs. We don’t take Keira because of how nervous and stressed she’s been. She stays at the house and just pines for me while I’m away, apparently. It’s okay, she’ll get used to things. The sandwiches are really good. You probably would have liked them. And this odd thing I tried from Starbucks, an “almond protein infused cold brew”. Which is actually blended like a frapp, just without whipped cream and stuff.

Then I head up to Corona after stopping by on the cats. Your dad seems to be hanging in there. We do have to talk about the whole living and moving situation sometime soon. He starts but he knows I have to get going.

My stomach is horribly bloated today, it seems. I just feel icky. Before I left the parents, I took Keira on a little jog through the maintenance road behind the houses. I think she did okay, but I was terribly out of shape. My lungs were the problem, I think, which is what K said; not my legs or feet. Even though I did just wear those Vans, since I don’t have actual exercise shoes. Do you think I should start exercising more? I guess so. You wanted to, a long time ago, before you just kept getting sicker and more hurt.

I’m so sorry my baby. I wish I could have helped you more.

Corona is all happy to see us. Keira does great today, even better than before, and everybody is pretty chill. I think running her beforehand helped. 

Today is almost over. I still don’t feel good. My stomach is still knotty. Your mom gave me ranitidine and some other tummy pill. Hopefully it helps. But then I got so hungry again before bed that I had to have of their homemade coleslaw and pasta salad. And a tiny sliver of cheesecake. I probably shouldn’t have done the cheesecake. We both had this problem sometimes, didn’t we? Our eyes bigger than our stomachs. In your case almost literally.

I love you my angel. I know you don’t sleep anymore, that you don’t dream because Heaven is beyond even our best and most wonderful dreams. But please help us rest tonight and please help my tummy feel better.

no tomorrows (poem)
There are no tomorrows.

 

The Week After the Service

Trying to spend more time with family. We play lots of cards. J&M come over one more time on Sunday and we play a large game of Spicy Farkle. It’s a bit of a loud dice game but it can be kinda entertaining. Keira is still doing well and I take her for a jog again, with K, and we both have trouble making our lungs work the last leg.

Dad helps arrange some trucks and help for “storage emptying day”, which is Monday. B comes with his truck and his fake leg, which he is more than happy to tell not one but three stories about taking it off and waving it at people for one reason or another. You would have loved that. We empty the storage unit in one trip and head back to the condo to stack it all in the living room. It’s a bit overwhelming but I’ll work on it slowly. 

Finally, tonight, your dad comes over for dinner. I’m proud of him. Dad grills some really delicious ribeye steaks. I make Mom make the powdered instant potatoes the way you did for that extra fluffiness. Of course your dad talks about old times and the usual, but it’s good for him. I drive him home and then come back to hang out with the siblings for the last time, with another game of, obviously, Shanghai. Then I actually drive home for good, to try to sleep..

My first night back in our bed.

It’s difficult, to say the least.

Keira is obviously missing you too; she sleeps on your side of the bed all night. I wake up at least 3 times. But we get through it. Then your mom actually arrives early Tuesday morning to start cleaning the room and taking clothes home. We have a calm morning organizing things, and then I head out to meet Z for lunch before he goes home. I wanted to stay longer but Mom says she is feeling more connected with you by doing this stuff all day, so I leave her to it.

I was going to come back before dinner but the parents already have it planned, so I check with her before staying, and she’s happy. We play some Starcraft before dinner. Then we have one last card game. I drive home again to get an early bedtime, since I am going into work tomorrow.

The past few days, there’s been an almost overwhelming sense of moving on. Not that I ever will, but it feels that there’s this pressure. Not from people, specifically, but just the universe I guess. It’s hard to explain. I am starting to feel less discomfort and pain, and more of a willingness to get back to work and try to get back into some normal routines.

For the second day in a row, your mom’s cleanup work at home is absolutely stunning. Clothes are almost all gone; bedroom, bathroom, kitchen are all organized; even the dining table is clear! It’s so amazing of her to do this all. I don’t know how she’s doing it, honestly, but it’s either helping her cope or it’s pure adrenaline fumes.

Bed time again. I get Keira up on the bed with me, which I want to keep doing. She was finally able to eat something after I mixed in some beef broth and canned food with her kibble. Hopefully she can continue to get better. She misses you so much. I miss you.

I need you here with me. I keep watching our honeymoon videos on repeat. I need you with me on my upcoming road trip for the tech conference. I need you with me as I fall asleep, as I wake up and get ready for work. But mostly I need your laugh, your smile, your kiss, your embrace. I love you. I loved you.

as long as i breathe you'll be remembered

Always and forever.

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A Grief Observed, part 6

Apologies for the lack of posting last week. Busy schedule. Appropriately, this entry in the journal also comes after a longer pause than usual. It’s about the memorial service. Of all the posts so far, this was the most difficult to re-read and edit.

Week of the Memorial

I have not journaled since last Sunday. We have all tried to keep ourselves super busy, especially me. Mom and I looked at tons of pictures and she helped me pick out her favorites. I had the apparently good idea to share everything with Google Drive. Which meant she needed to log in to her account, but she got it.

Monday I spent with your family again. We finalized some plans after meeting with the funeral director. His name is Bob; he’s very nice. He explains the whole process. I treat it very business-like for some reason. I guess I still don’t believe you’re gone. There’s a lot of moving parts to this thing. Not too many to handle, but enough. Why do I have to do all of this? You are my helper, my person to makes sure I don’t say too much or too little. Fortunately your mom takes on that role for now.

We are happy that she thought of this idea to go to Redlands. Your main home was here. You were always excited to come back here for Cuca’s or Baker’s or La Costa. Or ‘ghetto pizza’, which we pass several times as we navigate to and from the mortuary. “Mortuary” is a strange word right now. I never say the word “funeral” either, during this time. It’s not that I don’t know or understand, I just subconsciously can’t get past the word.

But we are trying to make you proud. The flower shop remembers you and mom and everybody from Soroptimists. They’re very sweet, and D makes sure they have zebra ribbon for your arrangements. Mom sheds some more tears. I know you want us to be okay but we can’t yet. It’s too soon.

I try spending the night in Corona with Keira. She does pretty well at night now, sleeping by me the whole time. I still need a fan on me to sleep. This time I open the window too, which helps make it cooler. It’s still hard without you. I can’t reach over and snuggle you.

Now it’s time to head home to actually start working on your memorial music and slides and things. For realsies. Mom and D are making the cards fully custom, and going to Costco to get a large portrait of you printed. It’s the same picture that I’ve had on my phone background ever since that night. I still can’t say it. You’re coming back. No, you’re in a better place. But I can’t say the D-word.

Keira is happy to be back at the parent’s. She still doesn’t eat; she didn’t eat at all in Corona. But at least here she knows where to bathroom and doesn’t get stressed. I’m still going to take her back up to Corona too. She needs to get used to them.

I stay up way too late. Aunt H and the two Texas girls are out for you, so we have dinner and cards. B&L bring over this super delicious Hawaiian food. I think you would have liked it; it was flavorful but not at all spicy. But the reason I stay up so late is to work on your video. Mom and I painstakingly picked out these songs and pictures. We want to honor you in the best way possible. I’ve been fighting with the technology aspect for too long. You would have told me to stick with one thing and make it work, rather than trying to bounce around between systems. You were always making sure to help me even when I didn’t admit that I needed it.

I drive up to Redlands with K and we listen to music and talk. Some about you, also about me and how we’re handling things. It’s been difficult to open up to some people depending on the subject. She loved you so much, and you know how her attitude has always been. It’s refreshing. Then we get to the mortuary to pay and test the audio and video stuff. It seems to work well. I want your pictures to show on the screens, and your music to play, while people are arriving. Even while we’re seeing you for the last time.

That part is upsetting. We knew that they would prepare your body and make you look nice with the clothes that Mom & D picked out. They did. But you’re so cold. So stiff and cold. I know you’re not here, but I have to say goodbye still. And how much I loved you. I still love you. I will always love you.

After coming back home, I finish making DVD and CD copies. Then I promise everybody I will get some sleep. I try. It’s a little easier tonight, after being done with tech-y things. But still not solid. Keira is sleeping very well though. You would be proud of here, being able to adjust so well here. I worry about here being in her crate all day for the service itself.

Thursday morning, I get up a little early. It feels ephemeral, as if I’m about to go somewhere and do something that can’t possibly be real. But it is very real. I actually need to finish writing my own memorial speech. I guess that’s not the right word. None of this is right. But I use a real pen and your real notebook. I know you were telling me to do it this way, not by typing into the computer and printing something. You knew it would help solidify the words and the fact that you’re gone.

I have to meet in Corona first to change. They say I look nice, and I remember how to tie my tie. I don’t know if you wanted me to wear one but I felt that I wanted to. I decide to drive myself to Redlands, to listen to your music again and prepare myself. I may get there before them, but I sit in the car and gather things up before going in. It looks like Mom & D arrived before me, or at least before I go in. They warn me that you’re there. No, that your body is there, at the front, in the casket. The chapel is lovely, the flowers are so beautiful. You would have loved them. Roses and lilies with zebra ribbon. A few are not coordinated because some family didn’t know of the florist or weren’t told in time.

You still look so beautiful. But you’re cold. And a little waxy. It’s so strange. I’ve never done this before. Even with grandparents, I may have stepped up and seen them but I don’t remember touching them. I kiss your head and hold your hand for a while. We’re all so upset and distraught. I think it did help to see that you were clearly gone. Can I say it yet? I can’t.

I have to keep busy now. Setting up your penguin light-ups and your coloring page [[She colored a beautiful fairy portrait]]. And we try to get the chapel’s sound system to play the music CD I made for you. Music was such a huge part of your life and personality. I feel that you speak to me through it sometimes. I hope you do. The CD player doesn’t seem to be working right; it just keeps repeating the same track. I try to help them fix it, then wonder if some cousin would be available to work it manually. That would suck. Thankfully, I hear they fix it a few minutes later.

Your dad is extremely upset, as is your brother. They know that you’re gone and that there’s nothing left to do, but they loved you so much. We all did. More family starts arriving and we try to hold onto each other to make sure we can pull through. People laugh and cry at our pictures. Especially J, when you’re with S [[her daughter, our niece]], which is often. There are some silly ones too, but thank God nobody found your infamous clown outfit one from Halloween.

The actual service is nice. I feel like we prepared for it, but that we did so in your honor. I don’t want people to acknowledge my work, I want them to see your beautiful face and know how happy you were. You still are. I know you’re up there and so much happier, filled with joy and light and love. But we’re stuck down here, and it’s not fair. Is that selfish? We need your sparkle back in our lives. Nobody in this room will ever forget you, you know that. You touched so many people for the better.

Most of all, me. If not for you, I would never have started writing, nor been blessed with an amazing career move, nor have known your wonderful family, nor developed any sense of fashion or pop culture or pragmatism or generosity. You brought so much positive things to my life, even if you didn’t remember it all. You were never a burden. You were always my person, my heart, my soulmate, my love. I don’t understand why you’re gone.

People tell me I spoke well and I “did great”. Whatever that means. I didn’t start sobbing during my memorial reading, I guess, is what they’re talking about. I did that before. When I was writing to you. You know that, you saw. I just wanted them to see how wonderful you were, how touching your life was, and how sad we all are that it was cut short. Truly before your time. It does not make sense.

We do get one last goodbye with you, just me and your mom. She gently reclaims that cute little gold wine bottle necklace. It’s now a family heirloom. Perhaps it may even have a little bit of you inside it, if it’s an actual container. If not, well, Mom or Barb will always wear it to think of you. But it’s even more apparent that you’re not here. You’ve told us to go on, to be with family, to remember you and to ease our hurt together, to try shedding less tears. Yet each day we are without you, a little piece of us dies again.

you will plan the funeral while in a haze
Fairly accurate. “Happy” is not a word that belongs here, but we do feel that we honored her.

 

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A Grief Observed, part 5

I didn’t have a post for last Friday, since I was prepping for a trip out of state to visit family. So today’s post will simply be another grief journal entry, as it would have been on Friday. Hopefully we’ll have another guest-post coming soon too. Thank you for reading as always. Love & light ❤

PS: I want to share another blog with you that really resonates with me; I hope you enjoy it too, especially if you are a widow/widower like us. http://widowofwonder.blogspot.com/

Fourth Night

Then we get back to the house and sis-in-law trims the hair by my ears and neckline before I head home. I don’t run into much traffic and I get home to have some good dinner with the parents, which someone from our old church made and brought over. I write more of this journal. I look at pictures and pick out songs for hours, making sure I have enough to get started and to make it just right for you.

The slide-show and tribute arrangement. You always told me how funny I was about getting projects like this, how detail-oriented I would get. I know you loved how geeky I was, even though you laughed at me. I miss your laugh. Why can’t you laugh for me again? I know you’re laughing and singing in Heaven. I know. It doesn’t always help us down here. But I will try to remember.

Earlier on the drive I called or messaged your four closest friends. I’m happy that D and C can make it, being so local. B will try, but she’s not sure. They are all devastated to hear the news. I have a hard time saying it out loud, but it’s also helpful to cope. And it’s nice to hear their voices and their fondness and memories of you. Even if you did not talk as much a you may have wanted to, they understood, and they loved you. We all loved you. We still do.

Sleep is difficult again. I do use the meds, but it has to be in two shifts again. Keira is doing much better though, happily sleeping on the cool floor beside me. I wake up and eat an ice cream bar before going back to bed. I stare at your picture again. I try talking to you. It’s hard, but I hope you hear me. I love you.

Fourth Day

I go to church with the parents in the morning, after getting up early with Dad and the dogs. They’re doing well today. I have breakfast early, the oatmeal from home; it’s something that feels routine. But I get nauseous again, so I take another nausea pill. I’m glad that you made me take them when necessary, even though it makes me sad that they’re yours. You won’t be able to get them anymore. I guess I will still be able to refill them for a while.

Mom and I go thru Starbucks and then have to drop something off at S’s house. She comes out to give me hugs for you. I drink my Salted Caramel Mocha Frapp, double blended of course. You made fun of me for swirling in the whipped-cream as soon as I could. I loved how I would always get your leftover drinks. I will miss that. My mom has the refillable Starbucks gift card from us that you customized and wrote on for her. She will cherish it even more now. We miss you.

Church is helpful for me. We hadn’t been there in a long time, but everybody loved you still, and misses you. C lost her husband at around our age, so she is a really understanding soul and will be a good support. Many people express their sympathy. And J&M of course, are without words. The junior pastor is actually an old friend of ours from childhood. He prays with me afterward and makes sure I know that he’s always available, as is the grief counseling group that they hold on Thursdays. I might do that. You would have liked his impromptu pre-sermon prayer this morning. There were a lot of people and families dealing with loss, with illness and death, and he felt the need to make sure those bad spirits and negative energies were chased away by love and support and grace.

Your dad wanted to come over for lunch, picking up El Pollo Loco. But he is sick and had to throw up and stuff. I think he’s really not doing well. Even though you weren’t that close, you were his little girl too. So we have J&M over instead, which is nice to see them. We play cribbage and I win. M helps me with some info and tips about dealing with arrangement-related things. She loved you. They all did.

Then I have to go back to the house and our room to pick up a few things, including your laptop and some blankets for your family. It’s difficult, but I don’t stop this time. I do still keep expecting you to come back to the bed. My mom keeps K company and makes sure he’s doing okay. We bring back the spare car for our visiting relatives to have a spare care just in case while they’re here. So many of them are coming on such short notice. It’s a wonderful showing of love and support. You know that you were family to them, to all of them, and they loved you.

I finally talk to cousin J. She’s been having a hard time too, especially since they just moved away. She can’t make it for the service but she’ll try to come down for the weekend to be with us. Her babies are just too much to make last-minute arrangements for. She’s happy to be living in their own place now, after only having to spend a week in the very crowded house of her friend. She loved playing cards with us before they left, and we all laughed so hysterically at your ridiculous penis drawings on the score pad. You won’t play shanghai [rummy] with us again. Why can’t you play cards with us anymore?

the empty chair (poem)

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A Dream Of You

Last night I dreamt you had come back to me. It was as though the last several months were just a ruse, a strange fiction whose purpose and origin were like gossamer on the wind.

You were sitting in bed with me by your side. We talked about your medications as you put them into your organizers. You spilled some on the blanket and I helped you pick them up. We argued briefly about one of them. Why is that the main thing I remember from this dream? That’s not nice.

Couldn’t I have just seen your face, your beautiful smile and loving eyes? Could we not have simply held each other again, your head upon my chest and our hands interlocked? This is how I need to remember you, in my arms, your golden hair caressing my cheek and neck, your soft lips against mine, your warm loving arms wrapped around me as mine around you. To say “I love you” again, not to the air or the portraits or the keyboard and screen, but to YOU, the real you, the you that is my heart, my soul, my mate. What I wouldn’t give for this.

The dream ends and the reality of another day must be faced. Alone, yet unalone. Sometimes it’s much easier to say that than to feel it. Please remember to remind me when you are near. I love you. I loved you.

two lovers embrace in a stormy yet calm sleeping position
To have and to hold…

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You Don’t Look Sick…

These are some phrases we would commonly hear from doctors, friends, even family, who did not or could not fully understand what K was going through.

You don’t look sick..

You’re too young to have these kinds of problems.

Oh you’ve [gained/lost] weight!

Really, they have no idea what’s wrong? That’s so strange.

Well, we didn’t know how you’d be feeling, so we just weren’t sure if we should invite you.

It’s not hot in here, you’re crazy!

Why do you need the A/C on when it’s 65 degrees out?

Are you really sure you could handle a new baby all by yourself?

Oh just get some rest and try to feel better, you’ll be fine.

Why didn’t you just get some sleep?

If she had the words to explain how maddening it can be to hear those phrases/questions over and over again, she would have shouted them from the rooftop. Or at least put them to pen and paper. But perhaps I can be her proxy in this.

By the way, there are several other writers who are much more articulate than I, and are first-hand sufferers, rather than second-hand; so PLEASE, go read their stories too.

the chronic pain cycle
I could not have drawn it any better. This was exactly K’s struggle.

There are several kinds of chronic, debilitating, yet non-outwardly-obvious conditions and ailments that patients like K deal with. Just this week, in fact, I learned about a friend of mine whose wife is in similar circumstances. Certainly there was at least one other woman who K connected with over their shared illnesses as well.

One of them is fibromyalgia. I won’t pretend to understand it fully myself, but I’ve observed its effects and its sometimes flagrant misinterpretation by those who are fortunate enough NOT to deal with it. When combined with other forms of chronic pain — in her case, spinal disc disintegration pain — it can be nearly paralyzing. (Actual paralysis could of course be an unfortunate outcome of a botched surgical attempt to fix said problem, as ironic as that may be.) The problem here is that fibro (for short) rarely manifests with any outwardly obvious signs. To the world, K often looked fairly “normal” (for her, anyway; we’ll get into that later). It also comes in waves. Some weeks, or days, will be much worse. Sometimes, the lucky ones will have a day or two where it’s not as bad, where they can actually get up, put on a happy face, go out into the world and do something social. And then, often, they need another few weeks or months just to recover.

Anxiety is another one. People who don’t understand anxiety first-hand seem to think of it as merely something to be whisked-away by meditation or similar “mind-over-matter” hand-wavy remedies. (Again, NOT a medical expert, and not a patient of this myself.) The actual fact is that K, and others, have tried all such suggestions and remedies, to no avail. They WISH it was that easy. You have no idea how many times anxiety sufferers have lain awake at night, silently screaming at their own brains to “SHUT the hell OFF!”. They cannot control it. And you, as a support person, need to realize that. It’s not your job to repeat tired unhelpful platitudes. No, you must simply be present, reassuring, sympathetic, and supportive. For example, sometimes in K’s case, I would literally give her a bear-hug and squeeze her tight to help calm the nerves. There’s probably a medical term for this — I know I saw it in Grey’s Anatomy.

You may have noticed the quotes about temperature, at the beginning. This is probably a much rarer facet of the medical mystery than most people deal with, but it’s very real. Whatever was causing K’s nervous system to over-react and over-register pain signals, seemed to also cause a profound heat and sunlight sensitivity. We’d been to the beach in our 20’s, but not for the past several years. When she did get out and about on a sunny day, her face and chest became bright-red, appearing almost as an instant-sunburn. But it wasn’t a burn. It was redness from within, from the sub-surface layers of skin and blood and nerves. She had to sit in the car with the cold A/C blasting her face, just to feel normal again. And at home, we had to run the central A/C far below 70 to make her remotely comfortable. Often with the airflow pointed straight at her face and body. I even bought a special wall-register (vent) that could be more easily adjusted than most, so that when she was sitting in bed it could hit her squarely.

Again, to someone who does not understand or has never felt these effects, this would seem ridiculous. Surely, you’re just being a spoiled person, wanting such cold air all the time? And occasionally I felt that way too, as I was begging the electric company to give us a break on our payment arrangements, or filling out a renewal form for the medical discount. Yet I can assure you, it was a very real, tangible effect. The few times when the A/C broke down, she literally became sick without it, as the temperature rose into the 80s.

But back to pain, and the more common facets of whatever this unholy conglomerate of diseases and disorders may have been. Those without chronic pain cannot understand, and are quick to dismiss or to gloss over the struggles that people like K face. It becomes easy to overlook them in your social plans, because you know that, 9 times out of 10, they will probably decline. It becomes a bad habit to offer platitudes or cliches, because you feel there’s nothing else you can do, or because you think that the “standard” solutions and treatments “should have worked”, or that “they’re just stubborn and won’t try them.” When in fact, they have tried; they have NOT worked; and they are TIRED of trying and trying again just to appease the next person who thinks they’ve got it all figured out.

Those who do not live the pain, also find it easy to assume and pass judgement. When she couldn’t eat anything but buttered toast for nearly 2 weeks straight, due to constant nausea; “Did you lose weight?” Or when she drank more than a couple cans of soda per day because it was the only substance that actually tasted like anything; “Oh that’s not good for you, maybe that’s part of your problem.” When she couldn’t get out of bed for several weeks and developed a sore that I had to dress, lance, and dress again, until it faded away; “Why didn’t you just go to the doctor?”

With a chronic pain patient, especially with these other complicating conditions, doctors are no longer your friends. They’re like little espionage agents, working for a government that doesn’t want your citizenship, secretly sharing information on you when it pleases their whims, so that you never know when you might suddenly be cornered in a back-alley and interrogated about your medication regimen. Or, even worse, told that you have to throw it all out and start from scratch because one agent doesn’t trust the other’s case-history. When in reality, the scans and the intelligence all shows the same thing: It’s complicated, messy, difficult, and probably beyond any single person’s expertise. But do spies ever play well with other spies? Not if movies have taught us anything.

No, the best K could do was to find, thank God, one solitary compassionate soul at a local pain clinic who at least cared enough to LISTEN, to be understanding, to make medication changes slowly and gradually, to fight for her case when others would dismiss it, and to always strive to put her comfort and sanity first, even above “standard medical procedure”. Such a luxury was never afforded her at the urgent-cares, ERs, and hospitals.

But I’m already nearing 1300 words, so I’m going to save those hot-buttons for another time and post. And migraines.. somebody remind me to add a blurb about migraines next time. ❤