This is the statement I am going with my new footwear: snow boots.
I am also relying on what my nephew told his mom after seeing them. No one’s going to make fun of his shoes. He’s in a wheelchair.
Apparently he didn’t count his dad, who looked at them obviously and pronounced them hot.
Well, yes, but more importantly, they keep my feet hot, or warm.
I don’t remember the last time I went for a walk in the cold and my feet stayed warm. They do now.
That’s hot to me.
Christmas, Christmas time is near,Sadly, I don't have Alvin, Simon Or Theodore, but I do have people to make any Nativity feel down-right super.
Leading things off from left to right is Captain America, parachuting in. You can almost hear him shouting, “Nativity Assemble.” I would not want to be the innkeeper who sent the Holy Family to the stable.
Up next is Nativity staple Buffy the Vampire Slayer. When planning any gathering the forces of darkness might crash, you need a slayer, and Buffy is tops.
Captain Benjamin Sisko from Deep Space Nine is next. He’s always thinking is Sisko. I did hesitate to include because there’d be no ship or station he could lead, but I figured he’s handy in a fight. The real stumbling block was his animosity toward Captain Picard who killed Sisko’s wife when Picard was Locutus of Borg. The reddit folks convinced me that Sisko had moved past his hatred. Plus, it was his wife.
Baby Yoda, a new-to-me figure from a friend, could pal around with the more famous baby in the Nativity. We won’t let him near any eggs.
Santa and the Big Three are next.
Next is new-to-me Mego Superman from my oldest sister. I need to order another red boot from Dr. Mego, but I kind of like this look. He reminds me of Mr. Rogers, and I can think of no superhero who could play Mr. Rogers other than Superman.
Finally, Space Ghost, because what better get for a late-night host than the savior. On the other side, a good interview could get the public firmly on JC’s side.
Merry Christmas.
My niece came home from school last night, and I am certain that at some point over the holidays she will make me laugh.
She will be glad. Me? I just hope it won't be the laugh that kills me.
When she was home over Thanksgiving, I laughed at something my nephew did and bent over at the waist, laughing so hard.
This would have been OK, but my chair was on and I was in front of our big kitchen island. If I hit my joystick while doubled over, it would have been bad.
I knew this and was making sure not to touch my joystick. My sister noticed and sent my niece over to turn off my chair and help me up.
Afterward, she apparently said something like, Aww, I used to be the one who was going to make him laugh so hard he died.
Not to worry, niece-y, you both make me laugh dangerously.
Whenever something unusually rotten (not flat-out bad) happens, a lyric pops into my head “My life flows on in endless song/Above earth's lamentation.”
It’s from the folk hymn How can I keep from singing?
I am sure Mom will be pleasantly surprised to know I think of a song that more or less affirms the triumph of goodness.
At least she will till she hears my next line.
The real lyrics read, “I hear the sweet, tho' far-off hymn/That hails a new creation.”
My version goes, “I guess my life is not the worst/But it sure is no vacation.”
I like mine.
John Prine “woke up this morning, put on my slippers, walked in the kitchen and died.”
I should be so lucky. (Just kidding! I do NOT want to die. It’s a joke, like John Prine giving his knees to the needy.)
Woke up one morning recently about an hour early and had to use the urinal. Not urgently at all. So I took off my mask and reached for my glasses.
Instead of grabbing them, I knocked them out of sight I know, I thought, I’ll turn on the light. Except I couldn’t find the light switch.
Half-blind, I tried arrange myself properly in the urinal.
It didn’t work.
I soaked the right side of my body and my bed.
My sister came and helped me into the shower.
I then reclined in my chair till I had to log on to work.
I definitely wouldn’t agree with the rest of John Prine’s song.
No one deserves parts of my body, so please bury me.
Thanksgiving is hard for me.
This is no surprise to my family, but I have been trying to figure out why.
I have much to be thankful for, I know, and I am. It may even outweigh at the one bad thing. It is really bad, though.
I think the problem is that family is a key part of the holiday, at least for me. It is for others, too, but normally there are distractions.
Thanksgiving has the meal, sure, but happy chatter is part of the meal. And try as I might, I can’t hear the jokes and news and stories.
Listening fruitlessly has two effects. First, it is really tiring. It also makes me want just want to be alone.
But I need to be with my family.
Hence, my struggle.
My insurance company cares for my health. They say it right there in the two rejection letters they sent last week.
“We care about your health,” the letters say.
I am sure, then, that the rejection of the power chair is an indication that they know my medical needs better than my doctor and physical therapist.
I am also clearly misreading this sentence: “Many of the features also exceed the minimum specifications for your mobility needs.”
If I didn’t already know that they care about my health, I might assume from that line that they care about only money and just want to pay the minimum.
But I know they care. They say so.
They also deny an order for a shower chair to replace one that is almost 15 years old.
Apparently, the ability to shower is a convenience.
They do suggest I talk to my doctor about care options.
I suspect lounging in bed 24/7 is a good option without a power chair. Spit showers, as one grandmother called them, or never going out are options for no shower chair.
It’s a good thing I know they care because they sure sound mean.
One of my hopes for next year is a rapprochement b between me and Bruce Springsteen.
It’s not like we’re enemies. That would require him to know I exist.
And it’s not like I am finding his music suddenly jarring. It is still awesome.
He has just made some choices I don’t care for.
It started his Super Bowl ad. Yes, it was about unity. It was still for an automaker.
The bigger problem involved the opening lyrics to Thunder Road.
A kerfuffle erupted online this summer about whether it was “The screen door slams, Mary’s dress sways” or “The screen door slams, Mary’s dress waves.”
Apparently, it is nothing new.
But this time a New Yorker writer reached Springsteen’s manager who said it has always been “sways.”
So they’ve been lying to fans for 40-some years, because the lyrics with the album, CD, on his website and in his official book of lyrics. The website has been changed. Presumably, the others will in future printings.
He still lied to fans.
The rapprochement might take a while.
I got an email the other day asking me to apply for the next phase of that drug trial I took part in in 2020. It was vague about a many things including start date, so I talked to a friend who works on drug trials who told me that in this kind of trial, you definitely get the drug and you take it for a long period.
I liked that.
I decided to email the study coordinator a few questions and when she didn’t respond, I looked the study up.
Turns out, they’re being a little optimistic.
The FDA has a hold on the drug because of deaths of nonhuman primates at high dosage levels.
My neurologist suggested I go ahead and sign up to apply because it’s not like I am promising anything.
So I did. But geez, haven’t these medical people seen Planet of the Apes?
Whenever I tell one of my friends about a story my sister’s dog, my friend responds, “poor doggie,” except she uses the dog’s name.
Granted the stories I usually tell involve him being the butt of Fame’s bullying or those very rare occasions when he chooses not to use his finely honed intellect.
But this tale totally merits my friend’s normal response.
My sister’s dog has seizures, which until two weeks ago were controlled by medicine.
But two weeks ago he began having them again, four in one day. He went to the emergency vet and had another.
They kept him overnight and put him on another drug. One of the side effects of the new drug is temporary ataxia.
He came home and was doing OK, except for wandering around like a drunk or someone with Friedreich’s ataxia.
But on Wednesday he vomited.
This was particularly bad because my niece’s first parents’ weekend was that weekend.
They eventually went, leaving him in the care of me, my nephew and Mom. I did nothing really.
He looked awful that weekend. He was on rice and broth, so he had nothing in him to counteract the drug. Plus, his mom, my sister, was gone.
As soon as she got back, he started improving. At the two-week mark — today — you can see the ataxia but only if you watch closely.
I want a two-week ataxia.
One night this week when I couldn’t sleep (it’s been a regular thing this week sadly), I was reading a post from the Facebook group “FA’ers only.”Unsurprisingly, it is for just people who have Friedreich’s ataxia (plus a dad of an FA patient who knows everything).
The poster asked the life expectancy of people with FA.
Because it wouldn’t be Facebook without rudeness, someone quickly weighed in that it was an inappropriate question.
What surprised me, though, was the number of people who wrote in something along the lines of “I don’t have cardiomyopathy or diabetes, ao I expect to live a normal length.”
I don’t have diabetes. My cardiomyopathy is minor and controlled.
But I am sure FA will kill me, and I don’t think that is very pessimistic.
Maybe I’ll choke when drinking. My nephew always asks me if I am OK when he hears mne cough and we’re home alone.
Maybe I’ll fall.
Perhaps I’ll sneeze when I don’t have a chest strap on.
I can go on and on. That’s my point. Diabetes and cardiomyopathy are just two on a list of a
bad things
This is me, around 1 a.m. one day last week.
I put the boot on to try to stop my leg from jumping. It was either that or call my sister to help me stand. And I hate calling my sister unless it is an emergency, and knew a restless leg wouldn’t kill me.
Plus, I didn’t know if standing would work. None of my other normal fixes worked.
I did feel like nursery rhyme character, but it worked.
If I wear my sleep mask four hours tonight, I will have worn its least four hours — the minimum I’m supposed to wear it nightly — for a week straight.
At first, I thought that would be cool. The app on my phone has never shown a seven-day streak.
But then I thought, who cares?
It’s not like it has gotten easier to wear or put on. It hasn’t.
It’s not like my legs have stopped jumping. They haven’t. They have gotten modestly better recently after I added to my medicine and been talking a supplement. I still had my worst night Saturday in recent memory because of my legs.
It’s not like I don’t wake up most mornings feeling as if someone has been pouring sand in my mouth. I do.
It just means I have been able to tough it out for a week.
How is that restful — to go to bed every night knowing you are going to have to go to sleep in a war?
I had a thought today to explain my lack of blogging. And to me, it is more scary than the pandemic.
I had just come back from my walk with Fame, during which I had composed emails I need or want to send, three or four.
But when I got home, I didn't want to type them out—it’s too hard.
That terrifies me, losing my writing because the physical process is difficult.
I will try a dictator program, though the last one I tried didn’t like my voice.
Plus, that’ll mean no music.
SIGH
All I can think of is the jumprope rhyme “Cinderella, dressed in yella/Went upstairs to kiss a fella/On the way her girdle busted/How many people were disgusted?”
I started wearing my abdominal binder again today at the encouragement of my awesome physical therapist.
I stopped wearing it a few years ago because it didn’t really help my trunk stability .
But at my appointment yesterday, I learned that balance is a secondary goal.
The main think is it holds I my belly, which in turn holds my diaphragm in the right place, which in turn helps me breathe.
But how many people will be disgusted if it breaks?
Three wheelchair folks and my physical therapist came over Friday to show me the wheelchair that matched my stated desires. It does that. And look what else it does!
I was a bit worried because it is not an insignificant piece of machinery. I was not sure it would fit in my bathroom. It will require some new processes — I have to back in and I have to get used to a front-wheel drive chair — but it works.
And it felt so good to stand.
Now, though, I have to wait for insurance.
The guy was insistent.
I told him I had someone coming when he asked if I was stuck and needed help.
Well, they can help you after I get you out.
He was the first walker to pass me. Lots of bikers passed, but the Tour de France they seem to imagine they're on didn’t allow them to stop.
My sister came up and helped, so did another walker, and I was free.
Why I went off the trail is a mystery.
I wasn't distracted or not paying attention.
I just ran off the trail, goddamnit.
My niece has left for school, and I am officially sad. Not because she has left. Because it reminds me of how hard my first year at school was.
I was lonesome. I didn’t know that I had a major disease. I thought I was just clumsy. I did not have time to write out my test answers — once I learned I had Friedreich’s ataxia, I would ask for and get more time. But because of time (at least that is what I tell myself), I got the lowest grade on a report card since fourth-grade math — an 81. I remember someone I knew looking at me in disgust when I grabbed his arm to keep from falling. There was worse, but FA was the root cause of the vast majority.
I don’t feel as if I have accomplished a great thing by improving. My dogs were the main reason. Plus, I have miles to go to be where I want, and FA will keep me from getting there.
Two caveats: I know I am lucky. I will not be alone in the miles to go or where I end up. Also, this should not be read as a reason not to tell me about my niece.
Mom thinks the reason I am unbearably sad these days is because my niece is leaving for school this week.
My niece is awesome — she is the only other person in the house that likes Spider-Man — but I am pretty sure that isn’t it.
It’s the end of summer. It’s getting dark earlier. I am not sleeping. The pandemic is still around. The country is so divided. The world is falling apart. Bikers treat the local trail like their own personal Tour de France. And my niece is leaving for school.
A co-worker and I were chatting, electronically, of course. We are still teleworking, and she works in Oregon.
She had fallen and sprained her ankle, so I asked how she was.
OK, she replied. “It’s very humbling.”
The “it’s” referred to relying on others.
Well, yeah. Sometimes, I think it is more than that.
I know we all need to depend on others at some point in time. But depending on people at almost every minute of every day takes a heavy toll.
I wonder if that is my problem, and if it is, I better get over it quick.
I do know better.
One hot day last week at lunch, Mom and I walked Fame around the block. I was wearing a black T-shirt.
Neither of those may have been the smartest plan but are not the thing that I know better than to do.
I like summer and the heat. Black T-shirts are OK.
No, what I know not to do is stare at Fame instead of where I am going.
But I did.
Which is how I wound up going off the sidewalk at the house and a wheel and a half into the garden. I was stuck.
No one was home, but my nephew drove up and began helping.
He was soon aided by a masked construction worker from a nearby site.
They and Dad got me freed, and the construction worker quickly left, leading me to wonder, “Who was that masked man?”
I soon saw my nephew delivering a cooler of cold Gatorade to some utility workers on my street.
A few days later, I saw my nephew out cutting our grass, and I had a thought about why he’s so awesome and so unlike me. He seems so comfortable being who he is.
As someone who’d change almost everything about himself, I am jealous.
Friedreich’s ataxia saddles you with an awful lot of crap, so I hesitate to declare something “the worst.”
But hearing groups of loved ones laughing uproariously and not having a clue why, or even just talking and not knowing what they’re saying, is pretty bad. I guess something could be worse — not having those loved ones, maybe.
You feel so miserable for what you’re missing, but you don’t want to show that misery because you don’t want your loved ones to feel bad. I fail at this.
My hearing aids are not too helpful. Neither are captioning tools I own.
You are there but not there, enjoying your people being around but missing much.
Fame had a bad week, which means I did, too, and it isn't over.
Over the summer she had two incidents of vomiting, nothing bad, just unexplainable. The vet and I figured it was something like she ate a cicada.
But last weekend, she started spitting up water, again not a lot, just once every day. I talked to the vet Monday and I brought her in Tuesday morning for a battery of tests.
The blood work was all good. The X-rays, though, showed that she was very backed up which doesn’t make a whole lot of sense to me because she poops, usually twice a day, always once.
They gave her an enema and suggested I give her Miralax.
I have heard of dogs and owners looking alike, not sharing conditions and medicine, although I have used her shampoo, which in my defense is a human one.
The enema seemed to irritate her anus; she dripped blood that evening, nothing bad but we went back on Wednesday. They cleaned her up, put her on antibiotics and gave her some fluid.
Also, we made an appointment to get ultrasounds of her stomach the next day.
The ultrasounds showed a thickening of areas of the stomach and small intestine. The vet said that could be irritable bowel, which is what she thinks it is, or it could be a tumor.
We are planning a needle biopsy this coming Friday to find out which.
So I will worry till then.
I have been having sleep mask issues.
Not so much the last four nights when I have 22 hours. Well, I should. It isn’t my fault a strap came undone in my sleep and I couldn’t reattach it.
One of the issues is my supplier, who used to send small and medium mask frames, now sends just small. The supplier labels it “small-medium” on the invoice, but it is a small. I use a medium.
We called the supplier to request a medium, and Mom was taking to asleep therapist there about my issues.
He asked if he had been out to see me before.
Mom said she didn’t think so.
But he was sure he had.
Finally, he asked,”Does he have a lot of figurines?”
I’m famous!
I got in bed to exercise today, but I forgot something. My sister was at the store, and it just me and my nephew.
He was up online gaming in the attic.
I called him, and he came right down.
I heard him talking to his friends when I called him.
He said it was fine when I apologized for making him come down, but how does one explain to your teenage friends that you have to go downstairs to get your uncle a urinal?
I hate being me sometimes. Luckily, my family doesn’t.
After dealing with me for 22 years, my personal care physician probably has a pretty good idea of what I can and can’t do. My neurologist, an expert in Friedreich’s ataxia, likely does, too.
Other than that, I don’t think most of my doctors understand what I am dealing with and why it might be extra hard to turn on a sleep machine or take medicines that are known to cause constipation or why surgery might not be the best option for me or why hearing aids might not work well for me.
It’s not that I don’t speak up. I think they don’t hear, at least not very well.
Some do. My optician said he didn’t know if I could have laser surgery with my nystagmus. But, he continued, it wouldn’t help you not wear glasses, which I told him was my goal. You’d still need reading glasses, he added.
But the ones who don’t hear well are little different from society at large.
We can deal with someone with one disability, but adding another in, even if they are related, is dicey.
My niece is reading this book she is reading for school that is a year’s worth of essays about things the author found delightful.
I may read it even if it does sound a bit saccharine to me.
I don’t guess I’d find a big audience for 365 essays about things that make me bitter.
Lately, I suppose, I am more sad or resigned than bitter.
I have a relatively good neurology appointment, but at the end of the day, I still have a deadly disease that is worsening.
I’d rather read the book of bitter than the book of sad.
At the risk of sounding like I am dissing mondo-cool people such as Bill Nye. I really hate masks.
That was my key take-away from my visit to the Children’Hospital of Pennsylvania today. Well, also that my sister rocked.
Neither are a surprise, but rarely mention the latter, especially because she won’t let me live it down. But she does (now shut).
Anyway, I know masks help prevent the spread of Covid. I would not have sat in a room with four non-family members without masks. But they keep me from hearing. Even with my microphone.
Luckily, my sister was there to translate or just hear.
I am still not entirely sure why my neurologist emailed me about setting up an appointment. I am glad I went, though. Even hearing little, I learned some things.
The first FA treatment passed a significant hurdle and will be on drugstore shelves in about a year, a doctor who doesn’t predict predicted. The drug essentially takes you back two years FA-wie and keeps you there.
He also encouraged me to take part in another trial.
And finally, he said I appeared to be doing well.
Hooray.
I am thinking too much.
This I nothing new or surprising. I always think too much.
It is just for the past year, everyone had legitimate worries. But now as things get better, I worry about silly things.
For instance, today it occurred to me that Mom became a grandparent at 50. It is highly unlikely that I will when I turn 50.
I know times have changed, and none of my 50+ siblings are near grandparent status, at least that I know of. (Siblings over 50. My family isn't that big.)
I suspect I need to start seeing my counselor again.
I am on my third sleep machine, second type. I hope that soon, I’ll be on the second version of the second type. I just learned it was recalled in April.
I did not learn this from my supplier, which called me a few weeks ago concerned I hadn’t been using my machine regularly. (It was because of the eye incident.) Mostly, Mom said, they were concerned my insurer might stop paying them.
I didn’t learn from that insurer, the doctor who put me on the machine or its maker either.
A message on the supplier phone told us about it as we called to complain when their shipment finally arrived missing stuff.
This was just the latest frustration in the sleep machine trials. Actually, no, the latest was this morning.
After many nights in a row with bad leaks, last night was perfect. I did nothing different, well except the stupid tube got caught behind the bed, almost causing an accident by not letting my head move.
I am just so tired of this.
I am thinking of getting myself a present. Of course I think I always deserve a present, but this time I really do.
On Wednesday night marked the seventh straight night I wore the sleep mask for at least four hours. My previous record was five nights.
Four hours is the minimum I have been told to wear it. And I wore it despite fits that ranged from so-so to god-awful (wore it seven hours, six were a large leak).
I fell back a little to three hours last night. Still, yes, I deserve it. What do I want?
In previous days, my jumpiest legs was my left one. But lately my right one has been acting up.
I blame the sleep mask.
I am using a cushion, the part that goes over the mouth, that leaks. I’m stuck with it because my supplier (I sound like a druggie) is late sending a new one.
So I put the mask on at night. It leaks, blowing air in my eyes and waking me up, and my right leg starts to jump.
Needless to say, I have been up late the last week.
As the pandemic wanes, I am forced to confront the fact that more than Covid has been making me sad.
This is no surprise and nothing new nor even insurmountable.
Actually, sad isn’t the right word as much as not happy.
Sometimes, I’d say I’m even content, which for me is probably worse than being sad. If I were sad, I might be moved to change. (This is very debatable.) But I am content sitting in the yard, walking with Fame and often Mom, watching TV, reading, teleworking, playing on my Mac, etc.
I am doing little things, and it is early to be back to normal. Plus, complications of Friedreich’s ataxia haunt just about everything I do. Yes, I am lonely, but I have FA so no duh, I say/
Maybe I should be happy I’m not happy. It’s a sure sign things are returning to normal.
Fame is my voice, crying out in the bathroom when I ask her for help, although last week she apparently didn’t like the way a transfer was shaping up and Tok it on herself to bark.
Today, on our first trip in public in more than a year, she also spoke for me. Sadly, the intended recipient didn’t hear.
We went to my niece’s graduation, and when my niece’s name was announced, I had her speak.
I can’t really clap or cheer, so I was pretty tickled, even if we were too far away to be heard.
After a month off because of the eye incident, I am having a hard time getting used to the sleep mask again.
The problem, I suspect, is that I am no longer confident of its value.
For the past 20 months, sleep therapists, technicians and doctors have told me that:
I went along with it. When I was using it regularly, I told them that I “guessed” I had a little more energy and my legs were better.
But in the month without, nothing got worse. Nothing changed except I was able to fall asleep better without having to deal with getting a mask on.
If I believe the sleep machine’s reports, the sleep system does have value. It tells me about the full and partial apneas it encounters (and I hope prevents) each night, although I think it just dislikes my breathing. When I wear the mask while awake, it reports apneas.
I will keep trying.
I can envision one day being able to wear the mask regularly. I do not believe I will get used to or enjoy this intrusive mask.
I like cicadas, with their beady redoes and spindly legs. They are just so kooky-looking — they’re awesome. And anyone who sleeps 17 years deserves respect.
Even though my wheels are coated in cicada guts on my return from a walk.
Even though a certain dog seems quite interested in eating them, though she hasn’t. Yet.
But I can’t hear with their buzz. Hardly at all. They are trying to make me hate them.
My physical therapy student came over last week, the first contact with a non-relative in 15 months. Well, except for getting a few shots.
It was pretty hard to communicate through masks, well, for me, but it was good to exercise and catch up with him.
And today, some friends stopped by one their walk, so I got to chat with them, too.
I sure wish I felt better after all that.
I almost choked to death this week, and sadly, it wasn’t because my nephew was making me laugh. Even worse, I don’t think I am really exaggerating.
I got in bed one afternoon after work to watch TV and take a little nap.
As I watched TV, I was drinking water, something I have done for while. It went down the wrong pipe that day. Badly. I started coughing and couldn’t stop.
Mom helped me. My sister helped me. I could not stop.
Later that evening, I just felt rotten. But at least I stopped coughing.
When I was in grad school, I lived with my oldest sister’s family while I internet the newspaper where she worked.
She got me a bench to put in their shower, so I didn’t have to stand.
As I recall, my oldest nephew, then 6 or so, also took advantage of it.
I was thinking about this recently because I hurt my back. Not the standard neck/shoulder pain but a new one at mid-back level.
To soothe it, I undid my chest belt, leaned my hands and head on the front grab bar, and let the water hammer may back.
Wow, it felt good. And it made me really miss taking a shower standing up.
My right leg started jumping shortly after I went to bed.
Briefly I considered calling my sister to help me stand up.
But then I decided to just sit up in bed. I rarely need help for that.
Hmm.
I almost made it.
But then I fell onto the left side of my bed.
Not too bad as far as falls go, but my left arm was pinned under my body, so I couldn’t call for help on my watch.
I thought about panicking, but then I realized it wasn’t too latent my niece and nephew were probably still awake to hear Fame if she barked.
So that’s what I did.
Then I got to work wiggling my arm free.
I was getting there when heard, “What do I do?”
It sounded like my sister, but she doesn’t ask for direction, so I figured it as my niece.
It was.
She eventually got situated, and my brother-in-law came in at the end to give an assist.
And my leg stopped jumping.
When I was little, we used to watch a cartoon very loosely based on Gulliver’s Travels. I say “very” because its plot revolved around a kid named Gary Gulliver and his dog Tagg shipwrecked on an island with Lilliputians, some of whom team up with Gary and have adventures.
I remembered none of this and looked it up. The only thing I remember is the above Lilliputian: Glum.
Glum was, well, glum, suggesting the gang was doomed or would never escape. The glass is half-empty for Glum.
I have been thinking about Glum recently because I seem to be stuck feeling things are rather hopeless.
Pandemic-wise, I know they are improving, and I am vaccinated.
How do I act now?
And it’s more than the pandemic, which I suppose is a signal it is getting better because I have room in my head for multiple worries. Yay?
On an online support group for Freidriech’s ataxia, someone asked who thought we’d walk again. Few people did.
I guess I don’t think I will, but I had never thought of it as a yes or no before.
It kind of forced me to think about the unlikelihood.
Finally, I am really struggling with the sleep machine, and I want to cry about how hard it is to use for me. Not the wearing—although that is hard—but putting it on, hitting the power button, trying to adjust it, everything.
Maybe Glum was right.
My sleep team is peculiar.
I bring them problems. Their solutions do work, but they solve issues I didn't know were problems and often make the problem I brought to them worse.
The new machine does seem to work better for me. Great. It was their answer to my old machine not turning on and off automatically. The new machine doesn't even have an auto start-stop option.
This isn't the only issue, I wonder if I speak unclearly?
I should feel better.
I got my first vaccine shot. Spring is coming (albeit slowly). I have a new sleep machine I used the first five nights in a row (ignoring that I failed on three of the next four nights).
But things are oppressive. I don't know why.
I can work easy enough, but outside of that ... Even little things are hard. I can't even force myself to do things that would make me feel better, except sit in the sun.
One day last week, in the span of about an hour, were two events (well, three) that typified my life. They were bad, just flat-out sucked, and were caused — no surprise — by Friedreich’s ataxia.
But in the midst of the suckiness were people (and a dog) who helped me very willingly.
First, I were to the bathroom to use a urinal. I dropped it, but Fame was there to help me. The second time I dropped it, though, there was little Fame could do. But Mom answered my call and got me and my chair cleaned up.
Shortly after, back at my desk, I coughed and broke my keyboard tray. I asked my brother-in-law for help. He took the tray out to his workshop and fixed it.
I am lucky.
The latest sleep issue: I am dreaming regularly. This is not a problem, just often leaves me wondering what on earth my mind is doing.
Apparently, without sleep mask, I don't enter REM sleep, which is when dreams mostly happen. But as I use it more, I dream, weirding me out.
Last night, I was in a car chase. OK, so was Harry Dresden in the book I was reading before sleep. I was being chased by Jawas, who were in Harry's chase, and I haven't watched anything Stars Wars recently. Also, when we killed them -- I can't remember who "we" was -- but when we killed one, they all died. And instead of dying, they turned to dust like Buffy vampires.
???
I don't suppose life would be easier if I cut off my feet, but it is something to think about these days.
I'd have to get new shoes and learn a new method of transferring.
On the plus side, no restless legs because those start in my feet. No discomfort in my feet, which are often too hot at night if I put socks on but too cold if I don't.
I guess I will just hate my feet, like most of my body.
In Matthew's gospel, Peter suggests that Jesus not go to Jerusalem and die, which seems awful sensible. He is, however, rebuked with the line, "Get behind me, Satan." Jesus seems to feel he must go.
Whenever Mom offers to use the lift to help me to the toilet, I am tempted to respond with a similar rebuke.
It is easier and safer to use the lift. I know this.
I also know that manually transferring to the toilet is one of the few times my legs get exercise these days.
I bought a new over-bed table this week, replacing my great-grandmother’s (really) with one that was a little more sturdy. And it is. I fell backward last night because my left leg was jumping so I was sitting up in bed. My head glanced off the new table and it hardy moved. Nothing fell off.
I needed something more sturdy because I was going crazy with my sleep machine not turning on automatically, as it is supposed to.
It does turn on sometimes, but not with the mask I like.
It was a new hell to breathe deeply into the mask, hoping it would start.
Now, the machine is on my table, so I can turn it on.
My head’s OK, too.
My niece tells me she brings me up in her college interviews. I think I also made an appearance in one of her college essays.
So maybe it was payback that she had to pick me up off the bathroom floor one morning last week and pull up my pants (thankfully, just the back).
Except ...
She could talk about Dr. Who or Supernatural, and she'd still get in to the college. She'd find a way to make it fascinating and insightful, for one thing, and colleges won't care. When they look at her record, they must salivate. The interview is a formality. She is smarter than I was in high school, which I will deny if her mom brings it up, definitely more athletic and well-rounded, more disciplined and self-assured, and ridiculously kind.
Also, no child should have to pick their uncle up as she and her brother do on a distressingly frequent basis. I should be paying them.
Any of the people who walk their dogs on the street by my windows might have wondered the other day why some guy is diligently working at his desk without a shirt. I did have a fleece around me, but it was falling off.
The answer, as usual, involves freaking Friedreich's ataxia.
I use a bidet, which sounds luxurious but saves me from trying to stand and clean myself off.
Unfortunately, I also feel very poorly. Water shooting onto me (unless it is cold, which causes other problems. Consider it, icy water hitting your rear?) or my foot slipping forward, for instance.
So there I was: using the bidet when my foot starts slipping forward. I didn't notice the bidet wasn't hitting the right spot until I glanced down and saw my foot had slid forward till my leg was almost straight.
The bidet, instead of doing its job, soaked my shirts.
I managed to remove them and dry my back.
I pulled my foot back.
Then I got back in my chair, washed hands and chose a new shirt to put on.
Instead of putting it on, though, my arms got all tangled up and pulled the shirt inside out.
At this point I decided topless was better.
One year when I was young, my uncle was having dinner with us around Christmas (I figure it was around Christmas because there was a nutcracker on the table, but I suppose it's possible it was there just because we were having walnuts).
Anyway, he asked me to pass it to him (I can still remember where we were sitting), and he told me to put my finger in the nutcracker. I did for some reason, and he started squeezing. It hurt so bad I couldn't tell him to stop, so he kept squeezing. Finally, someone, maybe his friend, pointed out I was crying, and he stopped.
I am reminded of this incident not infrequently because the story is part of the lore of my family, much like how my little sister took a big drink of red vinegar (the same uncle was involved in that, too; he was awesome).
It has also been on my mind because I sometimes back up and my arm catches on whatever I am backing past, but I can't stop fast enough, then it hurts so bad I can't call for help.
Sometimes, my arm gets trapped so I can't stop at all. I'm back at the dinner table, but no one is around to see my tears.
