Tag Archives: dignity

Getting an A+

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If aging is something one can study for, I am going to totally ace it when I get to being elderly. I am already getting to practice so many aspects of becoming frail, I may not even notice a difference when I’m finally, formally, an old lady. (I promise, though, solemnly, that I will not wear a purple hat–that is some silly bullshit, friends).

It’s not uncommon, for example, to have to regularly monitor one’s blood pressure and heart rate in one’s later years, but that won’t be any kind of stumbling block for me, as I do that at least once a day already. I am acutely aware of my heart’s various flutterings and hiccups, and take a month’s history of it to my cardiologist at each visit.

Likewise, the need to document one’s medical issues is an elderly treat I have already gotten to partake of–I will soon be one of those patients with a clear Ziploc full of pill bottles and scribbled notes and a notebook full of diagnostic letters and test results. Remember the halcyon days of youth when the only medication you were on was maybe birth control or allergy meds? No more, now there are beta blockers and handfuls of supplements. I have arrived, old age, I am already amongst your people.

I remember that my Grama would often bemoan not being able to eat whatever she wanted anymore, as many things seemed to upset her system. Given that last night and two nights ago I had big meals from carry-out restaurants and each night awoke at 2:00 am with gnawing stomach that lasted until 4:30/5:30 am, it seems I will not have to face that hurdle in my seventies. It will be old hat to say, “Oh, I need to watch my portions and be careful not to overeat because it makes my stomach hurt at night, dearie–you can have the rest of my smoked rib plate/reuben sandwich for me”. And, “I need to eat dinner earlier rather than later, or I won’t be able to sleep.” I should just start working Jeopardy into my life now; I can watch it at 4:00 while I eat a small, bland dinner.

Old people often feel stiff and achy in the morning–gone are the days of springing out of bed and leaping into whatever tasks or adventures were ahead. Each morning as I stagger to the shower with my hand on my lower back, wincing as my ankles and wrists and shoulders speak up with complaints of their own, I’m grateful that I will not have to go through the disappointment of feeling this way when I am old. I will not wake up one morning to find my youthful spring-of-step mysteriously compromised, I will feel the same way I have felt since I was a 46 year old babe with dewy skin and innocent expectations.

Older people spend a lot more time at the doctor’s office, too. Yesterday, waiting to be called for x-rays of my hands, neck and right shoulder, I overheard this conversation:

Sweet old couple waiting nearby, are approached by a receptionist:

Receptionist: Mrs Smith, have you visited Africa in the last 21 days?

Sweet old lady: What? What did you say?

Receptionist (louder, but not slower): HAVE YOU VISITED AFRICA IN THE LAST 21 DAYS?

SOL: WHERE? WHAT?

Receptionist: AFRICA!

SOL: Africa? (looks to husband) No…..I don’t think so. Why?

Receptionist (still not slowing down): It’s because of the EBOLA.

SOL: What?

Receptionist: I’m just checking “no”, thank you!

SOL: What’s your name?

Receptionist: Adawnna.

SOL: What?

Receptionist: Adawnna. (leaves)

SOL (to her husband): WHAT DID SHE WANT? WHY DID SHE CHECK SOMETHING OFF?

Husband (rising painfully slowly to his feet, goes up to receptionist’s desk, the same conversation is had, and he returns): -chuckles- They thought we might have gone to AFRICA.

SOL: Where?

Husband: AFRICA. WHERE YOU CATCH THE EBOLA.

SOL: She said I have the Ebola?

Husband: No, no, she said you haven’t been to AFRICA.

SOL: Well that’s true, who would go there? They have the Ebola.

Then they laughed and laughed.

See? I haven’t been to Africa either, so I’m in the club.

Old people also have trouble getting in and out of the car. I can no longer manage to control the swing of the truck door and get in at the same time, so I go wait in the driveway while my husband backs out, and then I get in. The reverse happens when we get home, and have to sort of let the momentum of the door haul me out in a controlled slithering operation. I have similar struggles with heavy doors, and hover around them waiting for someone to open them for me whenever possible. I also stick my foot out so that if someone crashes through it maybe they won’t break my wrist and knock me down–us old folks know there’s a broken hip lurking around every corner.

On the bright side, I look really good for being 80–I mean, I look half that age, really. I’ll be able to get lots of dates at the retirement home, I’m sure.

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Dizzying

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I’ve had several break-throughs this past week or so, and it’s almost like I fell into a rabbit hole and came out a different version of myself.

  1. I realized that in response to the structure of my family, I chose, at the age of six, to be the person who would be perfect, and who would make everything okay for everyone. Did you make a decision that hurt my feelings? I won’t tell you, it would make you uncomfortable, it’s okay. Do you have inadequate social skills and monopolize conversations? It’s okay, I will suffer through rather than call you on it. There are a million examples, and I’m in the process of setting myself free. It’s scary but also liberating when say, I’m on the phone with my MIL and she is detailing the various possible locations of the dining table in RVs and I think, “It is not my problem that you are inept at conversation.” OMG IT’S NOT MY PROBLEM. I interrupt the moment she takes a breath, tell her the things that I think are news on our end, tell her that we are thinking of her and that breakfast is ready so I must go. I’m not, ever again, sitting down to a cold meal because someone wanted to tell me how the weather has been everyday this month.
  2. I read this post and saw myself therein. I need to pace myself on a long term basis. This means that my activity level should not spike and bottom out, but remain more constant. I can’t push myself to the edge anymore. At least as much as it is possible–working in theater this over-activity business is kind of “how we do things ’round here.” This is difficult, because it means letting go of the “maybe that was the last flare up” mindset. This is a permanent condition. So easy to write, yet so very difficult to accept.

A result of examining both my people-pleasing at the expense of my own happiness and my tendency to over-activity–both of which are things that hurt rather than help–I did something really out of character. I had a thought, “It would be so cool if I could afford to have an assistant in my studio, even a few hours a week, to do some of the stuff I can’t do, but also stuff I don’t want to do because it takes away from the number of spoons I have to do the things only I can do.” This was followed by the realization that having done away with massage, I am saving nearly $400 a month. I CAN afford to hire an assistant, at $10 an hour, for four or five hours a week. So, I did.

I’m panicking a little now, because this is tremendously new territory for me. My assistant starts Friday, and my goal yesterday was to start a list of what she can do for me. I choked, man. I sat in my messy, chaotic studio and couldn’t figure out what to have her do–because, as I told her when I interviewed her, I am not entirely sure what this will look like. It’s hard to give up control of my creative space in any way, and hard to direct an able-bodied person to do things for me. She completely understood that, and now I am trying to fully understand that, and figure out a list of things for Friday. It’s much harder than it seems, because there’s a lot going on underneath the surface in terms of my own acceptance of my condition and limitations.

I am sure I will make it through, I am sure I am doing the right thing for myself and I know it’s okay to feel like I’m embarking on a trip with no itinerary. We’ll get to the destination we need to get to–we won’t be left floating about the ocean with no sail. Fingers crossed.

Maybe I’m Allergic to July

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If my husband were writing this, he’d likely say that my sudden descent into fury and then hysterical, ugly sobbing for over an hour last night came right out of the blue. Except that careful examination of events leading up to that suggest that there were many warning signs that might have been noted in order to batten down the hatches in time. I am past the point in my life where my behavior is something that happens in a vacuum and is related to the inscrutable whims of having ovaries.

Most of my life my emotional tactics have been polarized by being in the shadow of a person whose voice needed to the the loudest in the room, whose needs had to be greater than anyone else. The tacit agreement that this person deserved all the space/love/attention was that which forced me into a corner with my own emotions. I’m tightly lidded, and sometimes  even I am not reading my inner barometric pressure very effectively. It’s my job to be fine. Always. It’s my job to be rational. Always. I am never sure what the right balance is, so I tend to fail to release some steam in time to avoid a complete breakdown. Sometimes I’m not in touch with my feelings enough to know that I need to bleed a little air from the lines before something blows.

Second only to having a rare, incurable condition that includes chronic pain and a host of other oddities is the isolation and loneliness that come with it. It’s not as if someone comes across to find me bleeding from the head or with a visibly broken bone that demands action. People really only know if I am in pain if I tell them. It’s not my style to report my pain to people constantly, and I don’t want to become the sort of drag that can only talk about themselves more and more loudly to gain attention. I compensate well enough to fool even myself sometimes.

From Sunday night until Tuesday night I woke at about 1:30 or 2:00 am, with significant pain but also a racing heart and scattered, unsettled mind. I lay awake until 4:00 am each time, trying not to freak out. Tuesday night I planned for it. I drank less in case that was the issue. I took a bath to relax (instead it put my heart rate at 119, but I tried) I went to bed early. I set my mind up with things to think about should I wake up, and reminders about relaxation. I woke up at 1:30 am feeling both angry and unable to focus or settle my brain. My shoulder was terribly painful so I iced it, and whiled away the anxious hours until I fell briefly back to sleep at 4:00 am.

Once I got up, I Dr Google’d the beta blocker I’m on–Propanolol. Surprise, it can cause wakefulness and disturbed sleep particularly in the wee hours. Believing my PCP to be away on vacation, I finally decided to text him anyway around 10:00 am. I said to my husband at lunch time that I didn’t really think I could be asked to deal with all of this (pain, sleeplessness, lack of professional medical support). I caught the edge of tears in my voice and stuffed that back away. Part of me might have hoped that my spouse would immediately take me in his arms and reassure me, but that part of me is an immature girl who wants her mind read. Or, what it really is–I need someone else to bridge the gap between the growing emotional tension and the place where I can let some of it out constructively. When they don’t hear that unspoken request, I feel abandoned and angry.

I waited all day to hear from my PCP. I finally did, at a little after 5:00 pm. He’s not away on vacation after all (the only excuse I would find acceptable for not getting back to me). He told me to taper the Propanolol. I had to query then as to how much? How long? A series of texts trying to elicit information from him. And then at the end of that conversation he texted, “I have another EDS patient who is doing well on Cymbalta. Have we tried that?”

If you wish to go back through my archives you can see that last July/August, we tried Cymbalta not once, but twice, and my reaction to it skirted the edge of “needs to be hospitalized”. On the surface, maybe, this is just a boo-boo on his part. To me, it felt like a ton of bricks. First, it would help if my PCP remembered my history, especially the parts that required constant texting for two or more days to make sure I got through the reaction. Second, I felt shamed; he has another EDS patient who is apparently easier to work with and gives him the satisfaction of helping. Third, I was alarmed that he thinks he’s good enough at this to manage another EDSer, because I generally feel like he would give anything to pass me on to someone more competent.

I texted back, “Twice. Serotonin reaction both times.” I never heard back. I actually went back to my archives, too, to make sure that my recollection was correct–once again allowing a medical professional to cause me to question myself and what I know. My husband even said, “That’s what he tried on you last year that was so bad?” At that point I was already imploding and missed that he was with me on this and might have my back. I was aware of feeling angry and tired and pain. I did not take a full inventory to see that my internal pressure was approaching the red line.

I’m giving up massage, the one thing that I could hang my hat on as working and helpful. My shrink is retiring in September. My pain has ratcheted up significantly. I’m again having a drug reaction that crosses yet another item off the list and leaves a significant problem unsolved. I haven’t slept well in awhile. I don’t have adequate medical care or support. I’m going back to work soon, when I will not have the ability to sit around all morning because I stayed up crying half the night. I have lost some of the support I used to get from my mother, because a mentally ill family member is too close for her to not to lose her focus and boundaries. There are NO solutions for any of my most pressing problems.

So the fact that I then went on to very much overreact to a perceived slight on the part of my spouse and go on a rampage of shouting that ended with him leaving the room while I sobbed and ugly cried is somehow not so surprising as it seemed last night. I can see that I made myself unlovable even as I demanded it from him, and was somehow thorny while wanting him to be willing to hold that thorniness close to him and be tender with it. I can see that there is no way I can be neat and surgical about my emotional state and subsequent falling apart. I completely lost my balance last night, and I feel pretty wobbly yet today. I’m not sorry for the sobbing because I needed to release it. I’m sorry I wasn’t able to let any of it out before it reached the atomic level. I don’t know how to have a well-timed, scheduled breakdown, nor should I be so constrained, but for my own sake I need to stay a little more in touch with my internal state.

Which is difficult when so many things are just not working for me right now. I’m probably not done crying.

Like The Star Wars Trash Compactor

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I am having a hard time with having lost Boris (our small Mexican dog with the big Eastern European name) and doubting my choice to let him go. Not in any rational sense; on paper, logically, I know I did the right thing. But in my heart, I feel sorry and sad. I hope he understands; but maybe not–I’d love a world where animals had the same treatment as people, but would I love that because no one would get euthanized for having run out of quality time, or because people wouldn’t have to suffer for so long, either?

I just know that I really, really miss that little guy, and I am responsible for his absence.

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The trip to Chicago was really emotionally hard, and the key piece of that was understanding that I can’t depend on my spouse to advocate effectively for me when he is in his place of origin. On one level, I get it–he reverts to his kid role, he’s overwhelmed, they are extremely difficult. On the other hand, I’m angry and disappointed. I really am on my own, and since that is true, I will never go back with him to visit them unless something is really wrong on a deathbed sort of level. I can’t put myself through that. If they come here, as they have threatened, I will go out of town. I’ve given a lot to them over the years, and they’ve taken a lot more than they’ve given back, and their son can’t set good boundaries with them. So, I will have to set boundaries to take care of myself.

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Long after I am gone, I am sure medical science and genetics will evolve to determine how mental illness–or at least the propensity for it–is passed down. Borderline personality disorder runs in my family, and while I am sure the process is somewhat akin to alchemy more than straight genetics, it means that right now there are two Borderlines running about– each from a different generation. That’s just my mom’s side, too–there’s also depression, anxiety, alcoholism, sociopaths, suicide, self injury and drug problems coming from both sides. The question maybe is how do any of us make it out alive? When you know that someone is ill, and you’ve proven to yourself that you cannot help them, you have to detach and protect yourself. Sure, their behavior isn’t personal, it’s pathology, and yes, they are in tremendous pain, but that doesn’t mean you should allow them to hurt you. The moat is in place, the drawbridge is up. All signs say, “Go away.”

You’ve reached the boundary, you’ll need to turn back.

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One of my tenants called me today, in tears. One of the roommates’ mother had committed suicide last night. Walked out of the room from an argument with her kids and killed herself. The tenant who called me kept saying she was sorry for burdening me and I told her she wasn’t, I care about her, it’s a horrible thing. I reminded her to take care of herself so that she can keep on being a good friend to her roommate. I told her that her grief is valid, and doesn’t need to be measured against the roommate’s. Gosh, there’s enough grief to go around, really–you won’t run out, or take someone else’s, go ahead and grieve. I suggested that she not judge anyone for how they act right now; grief does strange things to a person, and suicide is like knowing an asteroid is coming to vaporize you–maybe then it might seem rational to ask about how much the house is worth or what should be done with the cars–those are solvable problems, whereas the asteroid is just this terrible thing hovering above your head. Maybe it’s not possible to look right at it; at least not at first. I told her we’d cover the rent if it was late, not to worry.

I revisited, for a moment, Ray and Ruby and John. But then I let them go back to their places. You never get over it, I told my tenant, but you learn to live with it. It takes a long, long time.

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The theme is who do I have to take care of, and how much? I have to take care of myself. I have to take care of my child. For ten minutes on the phone I can take care of my tenant. I do not have to take care of people whose mental illness could cause them to harm me. I do not have to take care of people who have no space in their lives for me. I do not have to take care of people who aren’t doing their work.

The shrink said that when we’re about to refine something, or pass to another level of understanding, just before we get there it feels like the walls are closing in, and the problem is everywhere. All around me demands are being made for my attention and energy. People want me to put them ahead of myself. So each time I say no, I’m moving forward. No, you cannot come to my house and ring my doorbell a million times and pound on the door. No, I won’t go on a trip where I will be lonely and ignored and pushed beyond my limits. No, I will not act as a buffer for you to avoid your family.

She also suggested that I probably need a really good cry. This is also true, but a far more elusive beast.

The Whole Kettle of Fish: A Study in Emotional Exhaustion

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We have returned from a trip to the Chicago-land area to visit the in-laws. As it always ends up, it was challenging.

The Thursday before we were to leave, I took  a very old, very sick dog to the vet for the last time. I had been up all night with him, setting me up for going on “vacation” (and I use the term very loosely) exhausted. It’s never easy to decide to euthanize a dog, and I don’t judge others whom I know love their pets dearly, as do I. We do the best we can.

I had only just returned from the vet, and the child and I were weeping in the hallway (without hugging, since I had dog poop all over me) when my doorbell started ringing over and over again. A peek outside confirmed it was someone with whom I want no contact, and from whom I fear violence. Unlike a normal person, this one chose to ring the bell over and over and over again, pound on the door, ring the bell, etc, for around 15 minutes. The child and I retreated to the back of the house and called the police. They just missed our unwelcome guest, but will now be watching for her. I was so stressed that the responding officer took both my violently shaking hands in his and said, “I can tell you are really frightened. Take a deep breath.”

——

The next day should have been for resting and packing, but I had bought tickets to see Wicked in a nearby city for that night, the night before we would leave for Chicago. We went, but I couldn’t enjoy it as much as I’d have liked–I was too caught up in feeling like I wronged the dog, angry with the unwelcome visitor (who should know better), worried about packing and, oh, the fact that I find flying terrifying. I found that at each musical number, I was beset with an almost overwhelming urge to ugly-cry. We got home late, got up the next day, packed, and headed back to that same city’s airport to fly out.

We were fine from El Paso to Austin, where we circled and circled and due to storms were diverted to Dallas. We sat on the ground in Dallas for three hours, while our flight to Chicago left without us. We flew back to Austin. I had quickly booked a hotel online while we lingered on the tarmac, paying an outrageous sum of $200 for a near-to-the-airport La Quinta. By the time we arrived in Austin (Trapped in Texas, Chapter 1), the airport was all but shut down. They booked us on a morning flight that would go through Dallas once again.

La Quinta refused to accept our distressed passenger voucher because they are total dicks and I hope they are someday financially ruined. We stayed in a room with a shower so gross none of us were willing to use it. The bathroom door wasn’t a door, per se, but two cabinet type doors with shuttered vents (like closet doors) that couldn’t be locked and the knob fell off. The hotel was full to the brim of loud, shouting, running people all night. I had not packed any wine, so I spent the night dozing and hallucinating to the tune of six Benadryl, while also berating myself for my needs.

We made it from Dallas to Chicago, and went directly to the Huge Family Gathering that the in-laws had scheduled so we could “see everyone.” It was raining. They did not, therefore, move the party into their house, they moved it into their filthy garage, next to the truck they for whatever reason did not see fit to move to better accommodate their guests. The first thing my FIL said to my husband was not, “How are you?” or “You must be exhausted.” It was, patting stomach, “Getting a little bigger, huh?”

My MIL informed me in whispers that she hadn’t told my husband but she had developed a serious spinal condition (Spinal Stenosis) and had been unable to walk and might need surgery. This is par for the course. My FIL explained to me and the child that the reason it was raining here but California had a drought was because “the liberals” got rid of the smog, which used to hold the rain in California. The child is 13 and he was baffled by this amazing, magical bullshit. We met cousins with whom we had nothing in common. We talked to other people about themselves and no one asked me much about me (also par for the course). Oh, except for when my FIL told my husband’s cousin that she should have me make her wedding dress, and also that I make, “Crazy weird costumes with funny legs and stuff.”

Oh yes, I know that this is what the FIL considers “praising” but I am far too evolved to accept that being passive aggressive is anything other than what it is. Which makes it hard for me with them, since I won’t play pretend.

The evening goes on and on and on until I finally say, “I am too tired. I must go to bed.” Then I am stranded in the filthy, moldy basement because not only are there stairs, said stairs have a pretend railing that threatens to fall off should one use it. My husband realizes this belatedly.

There are stairs at my BIL’s house, which means I must carefully plan my ups and downs. There is also an atmosphere of suppressed rage that I am especially attuned to, and which my spouse can’t notice. It takes us forever to get our shit together the next day, sitting in the ‘burbs in the rain, and we finally meet up at a Dave and Busters. I drink. I can’t help but simply order two drinks per encounter with the parents-in-law. The child balks initially (look at all those KIDS, he says, in disgust) but then has fun. Then we all retire to the BIL’s to sit and stare at each other.

The BIL disappears to the basement to play video games with the child. The MIL asks how my hands are (it has been two years since diagnosis, they still can’t stick with a conversation long enough to find out what I have). I say they aren’t very good. I mention that since it’s genetic, I have to just try to pace myself. My FIL asks me if changing my diet would help. I say, very evenly, that this is a GENETIC disorder, meaning my GENES are flawed, and the GENE that is flawed is present in 90% of the body’s structures, so NO, it’s not an issue of changing my diet. He falls back to his climate change theory and then they spend 45 minutes giving us an intimate blow-by-blow of my MIL’s recent, very scary MRSA infection. The MIL can hardly tell her own story because the FIL is trying to talk over her. My silly story is left far behind.I go to bed at 8:00 pm, alone, which is how it always works there.

Everything we eat is gluten. I give up and accept that I will just take immodium every day and gain five pounds.

Day three it rains. The BIL takes the child to the movies and the husband and I go to a nearby suburb’s charming downtown, have an expensive lunch and a bottle of wine, wander about, then collect them. We later meet the in-laws for dinner at an Italian restaurant they like. I stick my FIL with buying my dinner and two glasses of wine. My MIL mentions that we aren’t staying for very long. I resist mentioning that it feels like a life sentence. We planned four full days–not our fault one was lost to travel, but that one still would’ve been spent sitting in their goddamned garage. I mention that guests, like fish, begin to smell after three days. She agrees gaily, entirely missing the point, which is that we are staying four and when they come out to see us, they never stay less than an entire week.

Day four we go into the city. The in-laws refuse to go with us, but resent that we aren’t, I guess, sitting in their living room. We take the train, and are planning to take a boat tour of downtown architecture. The BIL leads us on a forced march that despite claims of, “We’re almost there” is far, far too long and too fast and too many stairs for me. My husband weakly mentions maybe a cab but is overruled by the BIL.

I should have stopped. I should have insisted on a cab. I relied on my spouse who cannot function or be decisive around his family. So it’s my own fault that every step I go up now, my left knee snaps and then grinds.

The boat tour was fun. Then we faced another forced march through the city, where we couldn’t find anywhere to eat, where the husband couldn’t make a decision, and there were words in the business district. I was hangry, exhausted physically and emotionally, and as usual, he didn’t have my back.

Upon returning we declined meeting the inlaws for dinner, and I went to bed. Alone. Early.

We met the inlaws the next day for breakfast before our flight. They, predictably, chose a place that could be called “Breakfast in Anywhere, USA”. They aren’t gourmets. Any anecdote I related about things that interest me was met with a complete lack of understanding, being talked over by my FIL with his penguin laugh, or silence.

Soon, the husband and I will have a little post-mortem, and I will explain that this trip we just finished? It’s the last one I’m taking to Chicago.

Someone’s got to have my back, because it hurts right now, along with my hips, my knees, my ankles and my calves.

On Getting Out of Jail

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So, I alluded to a bad thing that might happen, and it did.

I spent about two days panicking and then, all of a sudden, I realized it actually didn’t matter at all. I’ve made my choices based on what’s best for my health and well-being, and it doesn’t matter what happens, those choices are solid. Now, less than a week later, I am hardly thinking about it at all, which is a place I once thought I’d never get. I’m okay, I have a plan, I’ve got this.

Which is good, because as much as this other situation might want to hijack my life, I’ve got some pretty big fish to fry of my own. Mainly, my hands. At least twice a month I am in enough pain to lose my composure and seriously contemplate more than just my daily almost-a-bottle-of-wine pain management routine. The same problems remain, though:

My PCP is a nurse practicioner in WAY over his head, and we had several medication fumbles last year such that we both know we need someone with more expertise.

I live where Medicine Comes To Die.

I have, literally, no options in my place of residence.

The Shrink is retiring in September.

Once again, I’ve set up the summer as a time to fix problems so that I can go back to work. Instead, what it needs to be is that I need to try to solve some problems, not for work, but for me and my life. The answers are no more forthcoming, though.

The bottom line being, my hands are my life, and they have begun to hurt all the time, and that is just way more threatening and deserving of my attention than just about anything else.

Of Shoes and Fragility

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I think it’s safe to say that we all have things that we hold up to ourselves as things we will never do or actions we will never take that are actually a way of saying, “I am so afraid that I will have to do that” or “I am so afraid that will happen to me and I’ll be like people I used to think I was very, very different from and would not choose to be.”

One of mine is shoes. I will never wear ugly shoes. By “ugly” I mean shoes that are closed by means of velcro, or marketed as stable, secure or orthopedic. SASS shoes. Sneakers with a dress. I’ll never do that. I may well be wearing supports for my ankles, and orthotics in my boots, but I draw the line in the sand at sneakers or SASS or grandma shoes. I have one pair of boots by Earth Shoes and they are furry and muklukk-y and I only wear them at home, never out. But if you came by, you wouldn’t think I’d given up and gone to the dark side. I have given up heels for anything other than “evening out” type appearances already, so I feel like I’ve made enough concessions.

On Thursday I wore a pair of boots with a “reasonable” 1.5″ heel, and my left ankle felt like it was being stabbed all day, and the balls of my feet hurt, and the ankle supports rubbed my heels and my left ankle ached in competition with my left hip.

Perversely, I prefer that to what I am terrified of, which is becoming  less attractive, less fabulous; becoming clunky and old and infirm. So sure, I’ll have to stare at the ground to make sure I don’t fall, and I’ll stand in the elevator and curse my aching joints, but someone will tell me that I am wearing great shoes and somehow, that is preferable to me than walking comfortably about in a pair of crepe-soled loafers that are style-free but stable.

Because, it’s not just the shoes. It’s the loss of myself-the potential of myself as much as the actuality of myself. I think those shoes look stupid and clumsy and gross and I notice when people wear them, and I fear that I will have to, as well, someday. So I would be disingenuous to say that I don’t judge people for the shoes they wear, but it would also be untrue that it’s that direct–I have never wanted to rush gratefully into middle age and settle into clothes that aren’t fashionable, but I don’t pick my friends based on how they dress, either. I am determined, committed, maybe even obsessed with not “giving up,” even as, maybe, a glimmer of a possible upside–or, not upside, but, relief– occasionally presents itself.

Invisible illness is a double-edged sword; one side allows me to appear as if there is absolutely nothing wrong with me. The other side, not a news flash, is that no one knows that there is something wrong with me. They might think my asking them to hold the door is affectation, the same as the ring splints (“Oh, she’s always wearing fabulous things that are over-the-top, those are just a new thing she’s into.”), or long skirts (always a big part of my look, now adapted semi-permanently in case the threatened knee brace materializes), or boots (they lend that edge of toughness to my girly-fem skirts) because they actually lend some ankle support. Surprise, I am not always in love with my combat boots.

It’s been a rotten weekend of having to cater to my body, which is just refusing to be in sync with me in any way, and at this moment it’s possible I’ll be wearing an ugly brace to work for my left wrist for the rest of the week, something I absolutely dread (it’s velcro, feel me?) and want to hide. It’s possible I’ll have moments, like last week, when I think that I might need to pop over to the ER and visit with them about my heart rate, or I’ll have to take a call from my PCP wherein I struggle not to cry because my emotions have decided I am not their master at the moment. How much do I not want to cry at work? SO FUCKING MUCH. So, so much. I’ve only done it once since all this started, and that was in my boss’s office behind a closed door.

Each time I get to a point where I accept something; okay, I will always sleep with a heating pad; okay, I need to take a lot of hot baths; okay, I need to wear the ring splints everyday; okay, I’ll wear the CMC splints for hand sewing, too; okay, I will try to pull open as few doors as possible; okay, I will file for official accommodations at work; I’ll be damned but there’s some other slew of things knocking on that door and I’ve barely gotten the current guests seated and it’s all I can do not to just have a screaming tantrum and take to my bed.

But you’re not going to know that from my shoes, unless you look at the two spikes on the heels of the black ones. They might tell you a little something about my mood right now.