Category Archives: Acceptance
The air quality is pretty bad here, I can’t imagine what it is like in California. This time of year the air here tends to be thick with humidity and still so the particulates from the Canadian wildfires hang in the haze. The weather forecasters keep predicting rain, which would wash some of the particulate out of the air, but we’ve been dry for quite a stretch.
Why is this relevant? Well, last week I missed posting because I was outside breathing the “fresh” air. I was camping north of the Twin Cities. Spent the first couple of days in a tent and then the next several in a trailer. The advantages of trailer camping include air conditioning and last week that made a world of difference.
I’ve never really trailer camped before so I don’t understand the ins and outs of hook-ups and reserve tanks. I do have a friend who, having just purchased a trailer, asked for my help getting it parked and set up. In return I’ll have access to a retreat in the summer – air conditioning included. Seems like a win-win to me!
The last time I was tent camping I ended up in the ER. I threw my back out, badly. This time I had enough help and support (and I didn’t have Orion with me) that I did fine. I even managed to be a real help to the people I was camping with. I also took care to go to bed when I was tired (much earlier than I would at home) instead of staying up half the night around the campfire. I made sure to stay hydrated. I didn’t “settle in” and stop moving.
Even so I had a nasty allergy episode. Someone decided to spread an allergen (they had been specifically asked not to use) around the ritual circle. This is a particulate that contains a volatile oil. In this environment, especially with the heavy, still air, the allergen doesn’t dissipate and instead continues to be reactivated and spread. It meant I had to miss out on much of the community activities and stay close to our campsite. It actually could have been life-threatening if I was less careful or less well equipped to handle my reaction.
The thing about accessibility is that accommodations were made and someone chose to ignore them. I see that a lot. People block aisles, drop into parking spots “for just a minute”, use public accessible bathrooms as employee changing rooms or (as in this case) think their experiences with disability are equal to everyone else so if it works for them that means it’s accessible. This behavior is nasty when done in ignorance and down right evil when it is done with self-righteous intention.
I have spent 50 years of my life with an awareness of access and disability. My sister had sever enough allergies growing up that we had to leave the city at this time of year because the air quality was too bad. That was before the advent of central air commonly available in housing. I’ve cooked around food issues (for friends and family, conference style events and as a personal chef). I’ve been pushing Orion around in a wheelchair for 25 years. I have had my own experiences with access issues as well.
If I’ve learned anything it’s that there is no one-size-fits-all. I know my son’s wheelchair is not as wide as standard and just because he can get somewhere does not mean it is “accessible”. I know that what we need in a parking spot is different than what a driver with a disability might need, or someone with a scooter. I know that distance isn’t the same issue for someone pushing Orion as it is for someone dealing with Fibromyalgia or a breathing disorder.
Many people, myself included, who deal with asthma will joke that “breathing is over rated”. It’s actually not, and that’s why people die of asthma. That’s why environmental controls on air quality are not just an inconvenience. That’s why setting off fires, that become forest fires, that impact air quality across states is criminal. That’s why I run my air conditioner all summer long, it filters the air. It makes it possible to breathe.
I’ve been writing this blog in my head all week. I just can’t seem to find a theme I can stick with for more than a paragraph or two. Or, if I’m honest with myself, a sentence or two.
Regular readers will know a friend of mine passed away and her memorial service was this last weekend. I’m in the second or third tier of mourners. Tier one – the decision makers and those truly being overwhelmed with waves of grief. Tier two – the organizers. The ones asking the decision makers what they want and striving to make it happen. The people whose grief makes them prickly, rude, short-tempered, unclear and perfectly sure they have everything in line because keeping things in line is how they cope. Tier three – the support system for the first two tiers. The listeners. The worker bees. The one’s who are distant enough to put off their mourning until it’s convenient (at least a little more effectively).
Having the memorial made it real. That’s part of the point of course. Being gifted some mementos makes it real and personal (which it has always been, but denial is so convenient). Having nothing left to “get done” means there is no longer an excuse to put off the emotional response.
I’m sure the death certificate doesn’t say my friend died of cancer. But it is certainly the undiagnosed and untreated cancer that caused the heart failure.
I’m grateful my friend didn’t die alone at home, but had people around her who cared about her.
I’m grateful my friend went quickly, all at once, rather than having to slowly and painfully waste away.
I’m grateful her very elderly mother dared to get on a plane and put herself in the hands of a community of her daughter’s friends whom she had never met.
I’m grateful for the presence of people who spoke about areas of my friend’s life that I wasn’t privy to.
I’m angry that a cancer that large and impactful goes undiagnosed for so long. I’m angry that the complaints of a large woman (both exceptionally tall and not willowy) are dismissed by our medical community as always being about weight. I’m upset that no matter how good the insurance you’ve got, unless you know what to ask for medicine is practiced according to the insurance company guidelines rather than actual medical need.
I had breakfast today at Gilda’s Club. It’s a sort of monthly social event. At Gilda’s I am surrounded by people living with cancer, many of whom know they have no hope of a cure. I am always buoyed up by the spirit of care and acceptance. I am reminded that there is pain and sorrow, but also hope and joy.
I’m putting one foot in front of the other. Step by step.
The only thing that is certain is that things will change. When I was up at my parents (see last week’s blog) one of the things I did was help my Mother send sympathy cards. Her brother’s father-in-law passed, not unexpectedly. Thing is my parents actually had a relationship with the in-laws and my Mom still hasn’t quite reconciled with being unable to physically show up when these things happen. And of course, given the age group, they happen with some regularity.
The other passing that warranted a response from her was the second husband and truly life partner of an old friend. Again, this was not an unexpected death. All the same it’s the first time I’ve ever heard my Mother admit, “I don’t know what to say.” The reason she doesn’t know is because she’s not there. My Mother always made a point to BE THERE for the people she cares about.
Last week another friend, my age, died suddenly and unexpectedly. This has left many people in my community reeling. I’m doing what I can to show up.
There have been plenty of times in my life when I couldn’t show up. Sometimes I’ve been physically unable to. I have lost friends because I didn’t show up when they needed me. My physical limitations (up to and including being in the hospital) apparently were not an adequate salve for the feeling of betrayal.
Occasionally I haven’t been able to show up because some obligations trump others. I’ve always been proactive about trying to make sure that there is either notice or some kind of substitute in place. I’m sorry, sick kids and other family needs have to come first. Everyone who knows me well has heard me bemoan being unable to hold a “real job” because I am on call to Orion’s medical needs. Still they are surprised and hurt when that same issue comes up and impacts “sure I’ll help you with that project”.
The thing about showing up for other people is that when you do what you can, when you can sometimes you get lucky. Grief is an odd thing, and it doesn’t just stop. Sometimes that card that gets sent months later comes in at exactly the right time. Sometimes the phone call, “I can’t be there because my own life is falling apart.” provides some distance, or perspective or just an opportunity for a friend to get out of their own head. Sometimes not being there in the moment has made me available for the long haul.
Last week my women’s group did an honoring of Frieda Kahlo on the anniversary of her death. That was 64 years ago and people are still being impacted. People still show up when they can. I believe it still makes a difference.
This is the third blog post I’m writing today. The first one was lovely, until it wasn’t. I started somewhere and ended up doing a writing catharsis exercise. No one needs to read that. Self indulgence happens sometimes. It generates ideas sometimes. It generates beautiful tortured poetry sometimes. This time it needed to be put aside so I could move on.
Blog post number 2 was perfect. I took my theme and ran with it. I had photos all cropped and pasted just where I wanted them. I had a message, love, family and all that. I also somehow managed to create it as a page rather than a blog post. I set it aside and ran off to a doctors appointment thinking I could fix it when I got back. Nope. Somehow I managed to erase all but the first and last sentence. Irretrievable.
So here I am again thinking it’s Monday after Mother’s Day and I really “should” put out something. Orion promised me he was looking forward to reading what I wrote while he was at his day program. Haha. (I think he just wanted to see the photos he was in.) But now I’m tired and crabby and the sun has disappeared behind the clouds.
In the post I lost I talked about gardening and spring and after I wrote it I was looking forward to getting my hands in the dirt this afternoon. Given the sudden shift in the weather, and the fact I still have some writing to do, I don’t think that’s going to happen.
Some days just go like that. Maybe the sun will come out tomorrow.
I’ve been posting a little inconsistently because I’ve been spending a lot of weekends “up north” at my parent’s house. As they age their needs have changed. Mom is mostly using a walker to get around, even in the house. She’s really needing a wheelchair if she’s out and about.
There was a big effort in March to get Mom a hospital bed to sleep in. She can use the adjustability. It will also help to have the grab bars just to roll over. We acquired a bed from one of the relatives (in the next state over). The logistics of getting the bed here and installed have been daunting.
The biggest dilemma in all of this has been space. My parents hang on to everything. As my Mom has lost track of what she has, she’s found the need to “replace” things that never were lost. We’ve seen them using what we would call rags and bought new as well. Then we discover the problem is just that the new stuff is being “saved for special.”
We are repeatedly invoking the mantra “Use the stuff! If you don’t use it, then toss it.” We’re at the point where the hospital bed is ready to install and the white gloves come off. We’ve spent the last weekend cleaning, decluttering and tossing. The whirlwind also included putting in new faucets in all the sinks (to stop the dripping).
It’s been a little distressing, a little disgusting, and required a lot of patience. The end result is that Mom can actually take her walker into any room in the house. Furniture has been moved and cleaned behind and under that had been collecting dust for 20 years. There is still a lot to do, but this is a good stopping point.
There is a lot of disorientation, especially on Mom’s part. It will take her some time to get used to the space. Dad has to touch everything that’s been put away and make sure that his most precious memorabilia is where he can get his hands on it at a whim. I’m sure in a couple of weeks piles will begin to accumulate again. Better is still better.
Thanks to my sister Andrea, her husband Butch, her son Zac and his SO Darcy, and Andrea’s daughter Alyx (who spent the weekend scrubbing). I couldn’t have touched this job and they took the lead on all of it. I’m thankful to be able to help at all. 5 years ago, I couldn’t have done anything.
Our culture has lost track of the sacredness of caring for our elders. We don’t have the time, services, support or even the examples of how to handle this. We are trying to do this work from a distance. 3 hours is no distance from my parents compared to what many of my friends deal with. Very few of us anymore have the resources to take our aging parents into our homes. We do what we can, and are grateful for the opportunity.
This is me still not feeling much like writing. At least this week I’ve been doing the part where I write my blog in my head. That’s an improvement, and better is better.
I watch everyone I know sink into the cabin fever, long winter blues at this time of year. The longer brighter days are great, but they’re not enough when we get yet another 6″ of snow. I’m grateful to have a birthday this week. It gives me something to look forward to and it gives me a reason to get out and celebrate.
I’m grateful for the neighbors, who are Karina’s age. I haven’t had to lift a shovel all weekend and I was able to get out of my driveway to spend Sunday with a good friend wandering through the Como Park Conservatory and Zoo. We are very fortunate to have this haven in the depths of winter.
When you walk in your skin celebrates. There’s moisture in the air! Your eyes delight in the variety of shades of green. The conservatory staff is very contentious about rotating the small plants though so there are always some manner of blooming orchids.
This time I was delighted by how many things were in fruit. There were limes on the lime trees, chocolate pods on the cacao, star fruit and prickly custard apple. (Now I am on a mission to try prickly custard apple or Brazilian paw paw.) We found odd buds and blooms everywhere. In the conservatory hope for spring thrives.
Thursday was an adventure. Karina had the evening off (a rare occurrence) so we’d planned for her to take me out for my birthday. Then her whiskey distributor invited her to a launch party for Jameson IPA. (They age their whiskeys in beer barrels (caskmates) and brew their Irish Pale Ale in whiskey barrels). I was game and we had a good time. It was not too big a party, probably because of the snow (the first 4″ was Thursday, the 6″ was Saturday).
We critiqued the drinks the same way we often have dinner. Debating the merits and downfalls and discussing how to use or adapt the idea. Mostly we were pleasantly surprised. Neither of us are big IPA fans, but the mixed drinks were well balanced and the caskmates added a level of nuance to the whiskey.
I’ve always maintained that the older you are, the longer you get to celebrate your birthday. I started last Thursday and I’ve got plans (so far) through most of March. That’s something else to be grateful for!
Here are a few more photos from the conservatory, in case you needed your own touch of spring:
I’ve written about the Como Zoo before:
Have you missed me? I’ve noticed that when I’m dealing with big events in my life I stop writing. My journals all have gapping holes during the times when I would be most interested in going back and reading about what I was thinking in the moment. I’ve blank spaces from when Orion was a baby, and each of his hospitalizations. I have holes in the record immediately after recording that I had cancer. I stopped journaling when the cupboards came off the walls.
My parents are aging and it’s hard. It’s hard on them and it’s hard on us. I’ve missed the last two blogs. The first I skipped because my folks don’t have internet, the second because I’d just gotten home. I have been slammed with emotional content and I shut down.
When I was a kid I was “sensitive”. I cried in empathy, wore my emotions on my shirtsleeve and was generally harassed about it. I made an active decision to stop.
The first trick was pretty easy, typical in my family. That is to put emotion aside while you deal with a crisis. The idea is to stay clear headed and available, and not add to the chaos while it is occurring. The aftermath, when everything is safe, comes like a tidal wave and can be very confusing as it appears to have no source.
Having that kind of emotional catharsis in public is a great opportunity for gaslighting. There IS nothing to be so upset about (anymore). It IS overreacting (because it’s all the reaction at once). Even the part about “just looking for attention” isn’t entirely false. If I’ve just spent hours offering sympathy and emotional support to others, yes I may be looking for a little sympathy and emotional support for myself.
So I learned to allow myself to be distracted. Eventually I learned never to “get around” to dealing with my emotional content. There are lots of distractions! I’ve been trying to unlearn that.
I’ve found that I’m a better writer when I can be open to emotion. I’ve found that there is strength in vulnerability. I’ve found that it’s really hard to make myself do the work and that I need to create a time and space for it. I still can’t do it in public, at least not until I have a good handle on it myself. The support would be nice, but the gaslighting I can’t deal with.
So I shut down, a little. I look for distractions (I don’t have to look hard). I pick and choose my confidants. I try to carve out some space. Please be patient with me.
I got to spend the weekend up at my folks helping to make a happy birthday celebration happen for my Mom. Fragile is not I word I would ever have thought to apply to my mother. She’s the strong one, who will do whatever is necessary no matter where she is at. She bounces back. Climbing mountains after surgery is something I learned from her. She’s “in charge” and keeping track of all the moving pieces at any event she attends. At 82 today, she struggles to reconcile a self image which she can no longer maintain.
She rarely goes out anymore. It’s hard for her to get around. It’s hard for her to sit in the car for any length of time. When there are a lot of distractions, or conversations going on she gets confused. My Mom has been dealing with chronic pain for a long time. Her allergies are severe and complicated enough that medicating pain isn’t an option, beyond an occasional Tylenol. Her mouth is dry, so eating and talking become impossible when she doesn’t have water at hand.
We took her 100 miles there and another 100 miles back to go out to lunch with a good sized group. I went a few days early so we could get her showered, lay out her outfit and do some massage therapy in advance. Just my presence gives her a space to gather her resources. I make sure her water glasses are always full so she doesn’t have to ask. I put food in front of her rather than quizzing her about what she might want and what is available. I do the dishes and sweep the floors, which are both really big jobs for her. She can bank a little reserve.
For her, it was more than worth it. She had a really good day. She enjoyed it so much she didn’t want to go to bed because she didn’t want the day to be over. My youngest sister couldn’t make it, but all the rest of the female children and grandchildren were in attendance. It was a girls day out. There were lots of leftovers, but she knew I would get them home and see that they were used. The wait staff sang happy birthday and fussed over her desert. We all tried to keep the table conversation with one person talking at a time. There was a lot of love.
I am so very fortunate to be able to help facilitate that kind of good day for my Mom. I’m grateful for every opportunity I have to see her out and about and having a good time. It’s a joy to watch her relax and participate and let go of the worry of being “in charge”. I wish I could do more.
Happy birthday Mom!
It’s not been a “holly jolly” kind of year. In this season, the struggle to maintain without being overwhelmed can be particularly difficult. Some of it is of course the darkness. For those of us who live in more extreme latitudes the difference in the length of days between midsummer and midwinter is considerable.
North of the Arctic circle (or South for the Antarctic) We have the land of the midnight sun. At the summer solstice the sun never sets. That means at winter solstice it never rises. Think about that for a minute. A day where the sun doesn’t rise. It’s kind of creepy.
I will tell you truthfully that even here on the 45th parallel there are winter days when it’s so dark and overcast it feels as though there is no sun. The snow helps. It reflects what little light there is and bounces it so things seem brighter. The holiday lights help. They add not only brightness but a little color to the black and white photo landscape.
The darkness can also be emotional. Birthdays during the season that get “lumped in” with everyone else’s celebrations can be great. They can also build a lifetime of resentment. A death during the season can bring people together. It can also be a wound that gets reopened every year. Being overwhelmed with Christmas Cheer, especially when that’s not part of your religion, can be an opportunity or an oppression.
Then there is the demand. There is a huge demand on time, both socially and for many people, because of year end, on the job. If you work in retail or in the food industry you can wave goodby to days off for awhile. There is a demand on the pocketbook. All that socializing costs, as do the expected gifts. When the bills are already scary this time of year can be devastating. Despite all the seasonal sales, somehow it seems that expenses still go up and up.
I lean heavily on just do it. Daily Practice becomes focused on small nitty gritty things. Cleaning up the kitchen before I go to bed is not always easy, but better to do it than not. Making my bed in the morning when I get up (even if I might want to go back) makes it less likely that I will go back. Even paying the bills is better than the alternative.
So I put my head down and write the blog, clean the kitchen, make the bed. I make the phone calls and appointments. I meet the obligations and shop the sales with an eye on my budget. I put in a few extra hours where I can hoping for some extra padding on the weekly income. I wait in eager anticipation of the Solstice. Because after the longest night each day has a little more light.