I woke up this morning spinning and decided to go for a walk anyway. Second day in a row greeted with vertigo, a vertigo spell that began at about 3am while I was asleep, two nights ago. I had plans for yesterday that had to be canceled. That is par for the course. Today is Father’s day and I have plans for today as well. We’ll see if they happen or not after I get cleaned up from the walk.
I don’t know what has caused this three-day struggle with vertigo. It could just be the weather causing it. It’s Texas, the weather is always changing. If you don’t like the weather here, wait five minutes, except in August when you wish it would change but it just stays hot for weeks on end. The Wife frequently refers to me as her human barometer. Every time a front moves through, I’m sure to notice first, sometimes even before the cloud cover changes.
I’ve been going to physical therapy for about a year now. The exercises have strengthened some muscles and reduced some physical pain. They have helped me regain some balance, but nothing has an effect on rotational vertigo once it starts aside from single-minded determination or medication. I can sometimes force active vertigo to stop if I can afford to lay still and stare at a fixed point in space for about an hour; but I’m left with a sense of disconnection, of mild dizziness, even if I manage to get the rotation to stop. As I managed to get it to stop this morning.
A lack of sleep can trigger something akin to the vertigo I experience with Meniere’s. It isn’t quite the same, and I know the difference even if the average observer or sufferer can’t tell the difference. I’ve been sleeping fine, so it isn’t a lack of sleep.
Every one of the simple things I do each day takes longer to do and requires more effort just because of the conflicting signals I get from broken and erratically firing balance mechanisms. Just writing these few simple sentences taxes my abilities to do… anything.
But I am determined. I will get back up out of this chair and take my shower. I will go to a movie today if I have to go medicated. Going to sit and at least pretend to listen to family and friends because that’s what I want to do. Catch ya’ll on the other side.
I was telling my Physical Therapist about this subject at my last PT appointment. I used to be great at orientation. As a teenager, I loved maps, but I almost never needed one. I could find my way around quite easily by simply knowing which way the road went. I could build entire architecture projects in my head, a crucially important visualization technique that allowed me to understand how the various parts of any of the assemblies I worked with related to each other. I believe this was an outgrowth of my need to synthesize data without being able to write anything down, a side effect of dysgraphia.
Meniere’s has taken this away from me. The need to reinvent myself from the ground up with the systemic demands that a malfunctioning balance mechanism places on me included in the mix, has left me incapable of mapping direction any longer. I simply don’t have the free cognitive space within which to build complex structures including being able to remember where I’m going without a mapping program telling me which way I should go. I get lost quite easily now, apparently like most English speakers do according to the data discussed in the TED talk. Maybe it is time to learn a second language, one with ordinate directions built into it. Maybe that would help?
So I’m finally feeling almost normal after our trip to Chicago. The day after we returned home, the sore throat that had been bugging me in Illinois turned into a full-blown sinus infection complete with glaring red pink-eye. This prompted a hasty trip to my immunologist and a series of antibiotics. I finished the ten day course of antibiotics on Wednesday, and had my first physical therapy session in three weeks on Thursday. I was bushed after the PT, but that was only part of the problems that surfaced this week.
Monday morning was the follow-up for the 90 day Betahistine (Serc) test that my ENT and I had been running. The results looked promising, and so I’m going to try upping the dose for a year and see what that gets me in the way of relief from Meniere’s symptoms. I’ve noticed that I seem to start exhibiting symptoms again before the next dose of Betahistine is due, so I’m going to take the same dosage three times a day. If you are a Meniere’s sufferer and you have triggers similar to mine, you probably should get your ENT to trial you on Betahistine and see if it helps you or not. I am curious to know if there is a sub-group of Menierians who benefit more from Betahistine than others. This data would clarify whether there is a benefit to Betahistine treatment or not. Comments on this subject are not only welcome but I’ll beg for them if I have to.
I’m feeling better, I thought. I should have known this was a prequel to the hell life had in store for me later in the week. On Wednesday the air conditioning dropped dead on us. It had been acting a little squirrely for awhile now and the system is nineteen years old. Several times over the last few years I had noticed that the thermostat didn’t seem to control the system like it should. It would sporadically fail to come on when it got too hot in the house, and would fail to turn off when it got cold. Sometimes the interior spaces got chilly enough that I thought seriously about wearing more clothing. On Monday, the system’s lackluster cooling performance lead me to do some basic troubleshooting and I noticed that it was well past time for a filter change. Changing the filter did seem to improve cooling and airflow, but Tuesday evening the fan wouldn’t start if we set the thermostat to cool, and Wednesday the fan said fuck it, I’m outta here and refused to start in any position. On or auto. Heat, cool or off. No dice and no air conditioning.
Ah, Texas in the summertime with no air conditioning! Back in the days before that invention every building in the region had ten or twelve foot ceilings and floor to ceiling windows that allowed cool air to enter the building from the lower sash, while simultaneously allowing the heat to escape the building from the upper sash (this is the origin of the term double-hung for the architecturally curious. Windows which can be opened from both top and bottom) and even then you slept outside on what was referred to as a sleeping porch because it was too hot to sleep indoors at all. Air conditioning changed architecture radically and not necessarily for the better. With the ability to alter indoor temperatures builders could ignore long-held rules of thumb that governed Southern construction, putting large glass facades on South-facing walls and lowering ceilings to the now-common eight foot height. Which is all just fine, as long as the air conditioning works.
So we called our handyman, but he was out of town for a week. Deeming it time to bite the bullet, we called a contractor we have dealt with successfully before, and they sent a guy out on Friday. Based on his estimation we had to replace parts just to see if the system could be revived or not. I’ve been down this road a few times. Replacing one part leads to replacing another part, which leads to replacing a third part until at some point you’ve rebuilt the entire system. As I mentioned previously, it’s a nineteen year old system. I can’t even get refrigerant for it anymore, legally. Spending money on this dinosaur is throwing good money after bad.
The heat and the humidity were threatening to send me spiraling back down into vertigo hell, but the salesman (comfort adviser) who showed up to pitch us on a new system came bearing gifts of window units. Consequently we were open to the idea of looking into replacing the ancient HVAC system. This was a theoretical possibility on Friday, a possibility that is rapidly gelling into a reality for Monday. So I’m taking this opportunity to start some renovations of my own that I’ve been wanting to get done since the first day we toured the place before buying it.
I won’t be raising the floor in the former garage yet, that project is a bit too ambitious even if it is desperately needed. The attic fan that has hulked above my head every time I climb the stairs is going away though. I’ve wanted that thing gone from the time we moved in. I can’t use it. It draws outside air into the house unfiltered. Everything outside wants to kill me with allergies. The last thing I need is something that pulls even more allergens into my breathing space. The window units alone are making my symptoms worse, I can feel vertigo perched above my head like an unwelcome avian visitor. Removing the attic fan means the upstairs HVAC will finally be properly balanced without the thing taking up attic real estate and letting attic heat into the living space.
Who knows, maybe other repairs and modification are following fast on the heels of the new HVAC system? Hope springs eternal, even for those cursed with chronic illness.
Then, methought, the air grew denser, perfumed from an unseen censer Swung by Seraphim whose foot-falls tinkled on the tufted floor. “Wretch,” I cried, “thy God hath lent thee—by these angels he hath sent thee Respite—respite and nepenthe from thy memories of Lenore; Quaff, oh quaff this kind nepenthe and forget this lost Lenore!” Quoth the Raven “Nevermore.”
I got what I wanted out of the project, but it took a herculean effort to get it done. A lot more work than it should have been just to get satisfaction out of the project. I wanted the Wife to try her hand at managing a construction renovation with outside contractors, she’s been dabbling in renovations with some of her starving artists and actors as hired hands. Not making money, not enough to talk about anyway, but being productive and getting things done for friends. So I let her supervise. We picked the contractor, made sure what we wanted was in writing before work began, and waited for the work to start.
As the saying goes no plan survives first contact with the enemy, the enemy in this case being the existing broken HVAC system, and that pretty much sums up how this project went. The HVAC crew showed up, punched holes in every surface available, or so it seemed, and I did my best to calm the Wife down. Holes in sheetrock make dollar signs roll across her eyelids in a frightening hurry. They did seem to be punching a lot of holes. A lot more holes than I probably would have, but then that’s me. I knew they’d have to patch the holes they made, eventually.
The upstairs system was replaced first. The Daughter and Son were planning on staying in the house through the entire construction process, so their A/C had to be in place as soon as possible. The contractor refused, however, to remove the attic fan. While we had discussed it, he said he would not actually do the work of removing it. So we got some of the hands that the Wife has worked with before to get the giant thing out of the ceiling over the stairs and then put a sheetrock patch up to cover the gaping hole sixteen feet in the air. Twenty year goal finally achieved! With that out of the way, the rest of the upstairs was finished in a day or so (or so we thought) and the contractor moved on to the bigger project, getting the downstairs system updated.
The downstairs system had to be completely removed. This was the agreement before the contractor was signed on. Little did I know just how involved removing the system was going to be. I had wondered to myself for the better part of twenty years just where all the ductwork was hidden in this house. That was a question that was quickly answered for me. It was hidden in the kitchen ceiling. Hidden in the bedroom ceiling. It was clear from the planning stages onward that I was not going to be able to stay in the house with the ongoing construction, this was the second reason the Wife was supervising. I was dizzy within minutes of this phase of the work starting. So we left to find the first of several long-stay hotels that have popped up in the last decade around Austin, while the crew continued to gut the interior of our house.
The HVAC system itself went in pretty quickly. The vertical unit and it’s closet would be removed, the closet abandoned and used for storage, with a new horizontal unit located over the master bedroom, closer to where air conditioning should be in the first place. After the HVAC crew worked out how to get A/C to the now remote rooms in the structure, back where the old unit was, it became relatively short work to get the new ducts in place. That was when the real fun started. The plumbing crew arrived.
We have gas heat, gas water heater, gas stove. I like gas heat. I like cooking with gas. I like not paying for electric heat. I like not burning food with electric burners. We rarely need heat around here, but when you do need it, it’s a requirement. Gas heat requires plumbers and black iron piping, and even more holes in the ceiling. The two plumbers that we ended up with from the four or five who showed up before they were needed could have just as well been the one apprentice. He did most of the work, and he was the more agreeable of the two to start with. The plumber he was helping refused to go up in attic spaces and so consequently required the additional large holes in the ceiling everywhere he needed to work, and they didn’t bother to cover anything before dropping attic insulation, sheetrock dust and plumbing pooky all over everything underneath them. They even made holes that they really didn’t need, in hindsight, after it became clear where they were going to have to run the gas line from and managed to leave the gas turned off to the other appliances for several days in the process.
The upstairs furnace was the last piece of the puzzle to be solved, even though we planned for it to be done first. The gas line spirals it’s way through this house like water in an Escher print. It shouldn’t go where it goes, and it doesn’t make any sense for it to go there, but it does. Why it is where it is doesn’t matter as much as how to attach to it does, and cutting the line where I wanted it cut would have been several thousand more dollars, probably.
Just getting them to tell me where the gas line came from outside the house to where the A/C system had been before we moved it took several days of hounding. When I finally got an explanation, it was from the master plumber for the contractor. And it only took about ten minutes of talking to him to figure out why the plumber who was assigned to our job was uncommunicative. The master plumber? I’m pretty sure he thought he was god himself. Once we got the misunderstanding about the gas line straightened out and agreed on the plan to get gas to the new systems, he demanded that he be compensated on the spot. He had to come out here, we needed to pay him. He had people he paid to do this kind of work. His appearance on the job meant we owed him money.
He left muttering threats under his breath, without his demanded payment, and no payment would be forthcoming unless it came from his bosses in the company. You want to be paid on a separate contract? Work from a separate contract. This isn’t rocket science. But we did get the gas hooked up, finally.
From July 31st to August 14th we lived out of a slowly rotating group of hotel rooms. I was able to stay at the hotel I wanted for my birthday, at least. I even got to swim in the pool, watch a pay-per-view and get drunk in my own hotel room. The cost of this disaster set us back several thousand dollars, but there are many things that you discover a way to pay for if you really need it to survive. I survived, otherwise I wouldn’t be here to write this all down. But two weeks was twice as long as the project was slated to take, and the cost could have been much higher if the contractor had felt like billing me for all the extra work they made for themselves to do. After the confrontation with the plumbers and the damage to property created by their ham-handed attempts to get the gas line to the new system, the contractor decided that they would just stick with the agreed upon price and call it even.
The destruction of the interior of our house was corrected, just like I knew it would be. The new finishes are better than the ones they replaced. The new paint a better color than what was there originally. Best of all? The stairs are no longer a trip through the bowels of hell. The heat in that area is no longer fed through a grill that lead straight to unconditioned attic space. The bedrooms are (as they should be) the coldest rooms in the house for the first time in twenty years. I can still hear the TV when the A/C fan is running, and that is a major improvement.
I just wish that the confrontation with the plumbers had not been fated to happen. I really like everything about this contractor and would unhesitatingly recommend them to anyone; IF. If. If they don’t need any plumbing work. HVAC work? They do a great job. The comfort adviser who set everything up was an asset that kept the work going in spite of the trouble the plumbing crew caused. But the plumbers? I wouldn’t use them again if you paid me. I have a plumber already, thanks. He’s gruff and speaks plainly and I get straight talk out of him without having to drag it kicking and screaming into the light. That’s the way I want it. Tell me what the problem is. Tell me what the solution is. Tell me what the cost is. I don’t shoot messengers that bring me bad news. That is what twenty years in architecture taught me. You want the bad news as soon as it is known, because that is how you fix the problem faster and more cheaply. Punishing the messenger is how you end up spending more money. The contractor should have listened to the plumbing apprentice on my project. Should have trusted the HVAC crew when they related the problem. Any of their hands could have told them what the problem was four days earlier in the process. Instead I had to get the information third-hand from the plumber’s boss, who quite literally only made things that much worse. So I can’t sing praises for the company which will remain nameless. Because they don’t deserve blame, either. We were made whole and the systems work better than they ever have.
Now to get on with the other projects in the house. Fixing the Master Bathroom which hasn’t functioned for ten years. Raising the floor in the Master Bedroom. You know, the little things.
How do you get past the “why can’t you do its?” the (groan) “really? If I have to, I will.” Why can’t they just understand my limitations?I feel guilty asking my family to help me.
I need to get out and do things, but I want to isolate myself from things that make me feel sicker. How can I do both?
I became a different person after disability and handicap. After not being able to do many of the things that defined who I was to me. For me. First it was losing the ability to engage in paying work. Then it was household chores; mowing the lawn, working in the yard, even most dusting and sweeping (dust and mold allergies are my main Meniere’s triggers aside from stress) I have been reduced to editorializing on life from the sanctity of my home office where I have reduced the distractions and triggers to a minimum.
I’m right there with you. I feel like I’m hiding and that is probably because I am. Hiding from my symptoms and their triggers. I don’t know if this is the right way to cope or not, but I’ll do what I have to do to get by, because that is the minimum standard I’ve set for myself.
I don’t know how you can communicate the limitations to the people around you. My wife and children are among the most supportive people I know and even they have to be reminded of my limitations sometimes. I suggest trying not to take the grumping about unwanted burdens placed on those around you as personal attacks. The people who pick you up and care for you are caught in this situation with you. They have every bit as much right to be frustrated as you do.
I recommend frequent hugs, myself. I find them very therapeutic for everyone involved.
If you have daily vertigo spells to the point that you feel nauseated, you are precisely the kind of sufferer that the more drastic procedures for treating Meniere’s symptoms are for. If the injections do not give you relief, you should talk to your doctors about other more invasive treatments. If the vertigo doesn’t stop, you may have to face some of those consequences to make it stop. Making it stop occurring constantly, daily or weekly, is what every treatment out there is for. Keep looking til you find what works.
Just as important is the need to get people who understand your illness around you to support you. You need to get the feeling of vertigo across to the people you rely on. How helpless you are. Short of making them OD on alcohol or strapping them to the centerpost of a merry-go-round (no, don’t do that. Try getting them to read this) I’m not sure that everyone will ‘get’ what the problem is. My wife has been there for me since the beginning. I’d be dead now without her. If they (husbands or wives) can’t be made to see reason, then you need to find someone you can rely on to be there when you need it. You leave them (husbands or wives) when you find someone who cares, when you find someone who can help you with this.
This is what chronic illness is. You can’t get through it alone, and unfortunately we, your fellow sufferers on the internet, can’t be there for you in that way. We can’t be there to mop up and change the sheets. Can’t help tend children or cook or clean. Most of us wish we could, some of us know we’d be more of a liability than an asset. We can’t, but there are caring people out there. It is just a matter of finding them. Have faith in that.
This is the new normal for us. For anyone suffering from chronic illness. There is no other real way for us to approach it. To get past it. Embrace your limitations and do the best you can around them. We have to focus on the day to day. The here and now.
There can be no plans, no tomorrow, without someone willing to pick up the slack because there is going to be slack. We can’t kid ourselves about that fact. If it isn’t a limitation, it wouldn’t be an illness. It wouldn’t be a disability.
Maybe it’s just me. I don’t know. I’ve fought against disability all my life pretty much without realizing it. There have always been various limitations that I’ve just worked around. Meniere’s is just one more constraint that I don’t want and didn’t ask for, but there is no disputing its presence so make the best of it.
We can’t wish it away, god knows I’ve tried enough times. The closest I ever come to prayer is in the depths of a vertigo spell. “Just make it stop.” After awhile it becomes “just make it through this minute.” Then it progresses to “five more minutes.” Then ten, then fifteen, then onwards. If you get to the end of the attack, you get to see another day. Every morning you get to see, like the pilot who says “any landing you can walk away from” is a good one.
When I was a senior in high school I had a friend who would borrow one of the novels I carried everywhere with me and casually doodle the most amazing cartoons on the flyleaf. His cartoons were better than the things published in MAD or Cracked. My memory of that time may be a bit hazy now, but they were better to me then. Funnier. I marveled at the effortless way the pictures just came out of his hands, at his ability to draw, to write. It struck me as such a wonderful gift, to be able to take a pen and have it just make the lines you wanted to make and to make only those lines in the ways you saw them in your head. Freehand artwork, freehand writing, is almost magic in my eyes.
They didn’t have a word for my disability when I was in school. I was never quite like the other children. Teased frequently, I hid in books and stared at my desk, afraid of catching anyone’s eye lest I be subjected to more derision. I didn’t know what made me different, but I knew that I was different all the same. The teasing I was subjected to originated with my second grade teacher who thought it would be a good idea to have the other kids torment me to make me write faster.
In my mind the first and second years of elementary school seem to blur together. It’s hard to separate one form of abuse from another. One of my teachers thought that teasing me was the ticket to getting me to perform. The other one thought that daily corporal punishment was it. Both were dissuaded from their delusions by my parents. The corporal punishment stopped, but the teasing continued until I moved away from that town. I wasn’t to be free of the hangups that this teacher’s cruel methods of instruction inflicted on me until well into adulthood. To this day I remain a public school skeptic largely because of my experiences in school at the hands of the children and this particular teacher, evidence of just how much damage one wrong idea can inflict.
My problems in school were bad enough that the school insisted my parents take me to see a specialist. We went to see the same diagnosticians in Denver two times; once in second grade and again in 5th grade. The school insisted that there was something wrong with me; it wasn’t the teacher, it wasn’t the other children. There was something wrong with me. So my parents paid for the doctors and paid for the travel, and off we went on what was a grand adventure from the perspective of my seven year old self.
I remember the experience because it was such a rare occurrence to be in another place. The Rocky Mountains around Denver were about as different from the grassy plains of Kansas as you can get. It was the first airplane flight I could remember, and it made me love flying. I have a great love of Colorado largely because of the experiences I went through in Denver on those two visits.
The doctors were nice. They gave me various tests. Handwriting tests, drawing tests. Clearly they were looking at motor control in the manner after the time (late 60’s early 70’s) trying to figure out why I couldn’t write well. Writing really hurt. It still hurts. The stupid pencils never went where I wanted them to go. Lines were never straight. Letters were never legible. Cursive? Cursive was a practice in slow torture. Every assignment in school made me suffer in silence; unable to write and yet required to write. Homework went undone. Not because I didn’t want to do it, but because I literally would grow tired from the constant pain of writing and simply pass out on my homework.
My mother doesn’t remember the word dysgraphia being used at the time, but what I was suffering through was distinctly dysgraphic in nature.
I loved to read. Reading and writing are two completely different exercises in the mind. The words would sometimes get tangled up in my head, but the places I could go while reading were so much better than the reality I was facing that I just soldiered on through the occasional confusion. But writing? I flunked a semester of english my sophomore year in high school because half of my grade would be based on a term paper I would be required to write long-hand. The subject of the paper that was selected for me was of no interest to me. I asked the instructor for a different subject more than once, only to be told I would write the paper and to stop arguing about it. In one of my first acts of rebellion I flunked the class rather than spend a week or more in agony only to have the paper rejected because it couldn’t be read.
I have never taken notes in class. When told to take notes I would write a few lines and stop (a trick I learned early. If the page is blank the teacher will notice and scold you) Notes were pointless. By the time I had written down the first sentence I’d have missed the next three sentences. What I learned to do was listen and absorb so that I could repeat what was said almost verbatim, at least briefly. Eventually I learned to synthesize the information internally and was able to rapidly apply it to new problems without ever having to write anything on paper.
Few of my teachers believed that I could do this, that I could absorb and apply knowledge without first committing it to paper. They especially didn’t believe it because I failed so frequently to do anything demonstrative in front of the class. I was afraid to write poorly and so would take far too long at the blackboard to be able to demonstrate anything to anybody.
Even though the specialists who tested me in fifth grade issued written instructions, specific to each teacher about the challenges I was facing learning in a classroom environment, the instructions were discarded as lending favoritism to a child that the school teachers and administration frankly thought was the problem in the first place. My mother was livid at the time and still gets angry talking about the subject. Did they know how much all of this testing cost? Paid for twice over out of my parent’s own pockets? At the insistence of the school? Testing and findings to be discarded as too much trouble to institute, too much trouble to turn into a different teaching model?
What they did instead was slap a label on me. They called me slow.
I carried that label with me from second grade through seventh grade. The label and the torment only stopped at that point because I moved away from my hometown in Western Kansas for a few years; and when I came back to Kansas for my sophomore year of high school it was to a different town, Garden City, and to a different school. I never did spend any significant time in Leoti from that point forward. My nostalgia for the place I long considered home is leavened with ambivalence and rebellion. Rebellion against the label slow.
My sophomore and junior years of rebellion in Kansas under the custody of my father got me sent back to Texas and my mother. The all too familiar plight of children caught up in divorce. Shuttle diplomacy and holidays with the other parent. Custody battles and missed child support payments. From Leoti, Kansas and slow to Stinnett, Texas and rebellion. Garden City, Kansas and missed opportunities to Sweetwater, Texas and make the best of what you have left.
My senior year of high school in the late, hot Texas summer of 1980. My friend and his artwork were also transplants to the town and the school. Since we were both new, we decided to navigate the terrain together. Watch each other’s backs. The counselor lined out the required classes we would need to finish the year and graduate. He and I would be in organic chemistry together. A class we both found so boring that I would read and he would doodle on my books. We also had a few other classes together.
This is small town rural Texas, education isn’t something they spend a lot of money on. In the Kansas high school I had attended the previous year I had automotive mechanics and welding and a virtual smorgasbord of other classes I could have picked through if I had wanted to test my abilities in other areas. In small town Texas I essentially had two elective choices; metal shop and woodshop. Home economics would not be offered to boys. There was an FFA group, but animal husbandry was not my thing even if we had a farm to raise animals on, which we didn’t. When we were unimpressed with the first two options, the counselor did admit that they also had a typing class and technical drafting. These were clearly choices she didn’t think anyone should be interested in. When we went around to talk to the various instructors to see what we might be interested in, I had an epiphany.
An epiphany in the example drawings from the drafting class. Drawings that illustrated how to build things. I had been a model builder for years by that point, but it had never occurred to me that someone had to draw those assembly instructions. It was the drafting equipment. The drafting machines, boards, lead holders, straight-edges and triangles. The realization dawned on me. I didn’t need fine motor control as long as I had an edge to guide the pencil. I could focus on pressure and distance and not worry about direction. Writing? Slow, painful, tedious work; but block lettering gave me the ability to finally be able to communicate what I wanted to say clearly. Leroy lettering guides kept the hands moving, forming the correct shapes.
My mother could not believe I wanted to draw when I came home from school that first day. After everything I had been through, the problems I had writing and communicating all my life. Writing, she told me, was something I always wanted to do. I wanted to tell stories. She would write things down that I asked her to, and then I would meticulously copy each character onto another page. But drawing? She couldn’t figure out what the attraction was. If that was what I wanted to do, she wouldn’t stop me from doing it.
It was another senior class that finally showed me how to write painlessly. Typing. I knew touch typing would be a useful skill because I had already seen my first computer keyboard.
The computer was built into a suburban; as in, it filled the entire inside of the vehicle aside from the driver and passenger seats. You had to open the side doors to get access to the input and output terminals, sitting outside the vehicle in the Arizona heat. As kids, the science went right over our heads, but I do remember that he could type on a keyboard and the computer would print the clearest, most precise letters I had ever seen. It talked back to him. He played a text game for us and we were completely blown away by it.
Presented with the chance to learn how to touch-type as a senior, I took advantage of it. IBM Selectric III’s seem clunky and slow now, and error correction was a pain in the ass. But in the 80’s, for me, it was like being given access to electric light for the first time. I could type whatever I wanted on the keyboard and it would produce exactly what I wanted it to say almost as fast as I could think it. I had never had access to anything like it before. I asked to be able to do my homework in the typing lab, it was so much easier to just type it than it was to write it. I knew I’d never be able to afford a machine of my own, but if I could just be able to work in an office, there would be machines in the office I could use.
The pieces of my future were falling into place before me, whether I knew it or not. My intense interest in architecture could be accessed through drafting for architecture. My inability to write could be bypassed by access to a typewriter. After a year of drafting in high school, and a twelve month technical course at the local campus of TSTI, a twelve-month course that I spent eighteen months completing.
Eighteen months where I was badgered by my advisers. They told me I was a slacker. Told me that I was never going to be able to work in the drafting industry. they tried every way they could think of to get me to quit the course, because all of them knew that I couldn’t draw well enough to make it in the business world. Couldn’t apply myself with enough diligence to produce the work required of a draftsman.
But the instructors at the TSTI campus had taken delivery of a CAD system during my time at the school. And I knew, even if they didn’t, that the computer revolution was on its way. The world that they thought I would have to conform to, to exist in, wasn’t going to be a permanent fixture in my life.
I finally graduated and got my certificate and I went out in the world with my label of slow and my newfound tools, went out to discover the land of design and construction for myself. I went out into the business world and was almost immediately flummoxed by the fact you have to sit still in an office.
Sitting still drives me absolutely nuts. Give me some decent shoes and rugged clothes, and I’ll spend all day for weeks exploring every inch of ground around me for whatever can be found. I never really thought about it; but I imagine being cooped up inside revisited the torment of school, being asked to engage in rituals I found painful and to gauge facial expressions I found confusing at best, incomprehensible at worst. Maybe I need the physical stimulation to make the mind work.
In any case, the first barrier to office work wasn’t actually the writing and drawing. No, the first barrier was getting over my own internal loathing of sitting still. That took years, longer than it took me to learn to type or to draw with precision. Eventually I learned to tap into what is commonly termed as flow now; and I could draw essentially effortlessly for hours at a time, longer and better than my peers. I had to be more dogged, more persistent. I had to be because I was slower than they were. That is an unpleasant, unavoidable fact.
My hand drawing production rate was much slower. However, because I had to take time to make sure the lines were exactly right, my drawings were also generally of better quality. This is not bragging, this is me relating the feedback that I got from dozens of years of work in the field. Yes, Anthony. Your drawings are beautiful. Can you turn them out faster? The same old label of slow coming back to haunt me.
“You are slow, Anthony.” Sounds like stupid in my ears, and it is meant to sound that way. Yes, I take longer to get there, but it will be worth the trip unlike some draftsmen I won’t mention. That is the line that ran in my head in response. I had to bite that retort back more times than I can count.
I learned to crib graphics as a method of timesaving. I would type or have someone else type notes and affix those transparencies to my drawings. I would draw details in such a way that I could duplicate them easily using a Xerox machine, or wholesale duplication of sheets of work. The whole industry of architecture was undergoing a change as I underwent these changes, but it was the echos of “you’re slow, Anthony” in my own head that made it imperative that I cut every corner I could in order to turn drawings out as quickly as possible.
In the end, I did it.
Not because I got faster at hand drawing than anybody else. No, all of my peers can sketch rings around me. They always have been and probably always will be able to draw rings around me. The few times I’ve ever had to draw anything by hand in the field I was embarrassed to do so. My contractor friends, men who trusted my drawings implicitly, were always careful to assure me it would be fine, but I know just how childish my scribbles looked.
They were bad, and it was a barrier that kept me from advancing in the field of architecture. More than once I was offered promotion to supervisor or manager and I always balked at it. Why? Because supervisors and managers draw freehand right on the paper, and the draftsman just takes what they draw and cleans it up. I was really good at the clean up part of the process after years of practice. I was never going to be good at the freehand part. That was not something I would be able to do, and deep down in my heart I knew it was a barrier that I could not cross.
What changed things for me was the early exposure to computing at the shoulder of my beloved uncle. The exposure that made me understand the power of computers.
When you draw something in the computer, it can be duplicated endlessly without degrading the copy. The digital world allows you to be able to replicate whatever work you’d done previously by simply copying and pasting. Drawing guides are built in, so shaky handwork is irrelevant. The initial precision was the determining factor of replicability, and I had honed precision to a fine art already. It was just a matter of mastering the new tools.
Since I couldn’t get my employers to see the vision of my uncle’s suburban filled with computer gear, I took it upon myself to enroll in courses at Austin Community College so that I could gain access to contemporary PC’s of the time (386‘s probably) while the motor control problem makes me a klutz with hardware, software is just a matter of understanding the logic of the system in a way that allows you to utilize shortcuts built into it. Classes in programming were more than I wanted to deal with at the time, and programming itself means little to me still, but breaking security barriers on the simple GUI’s the school used at the time was child’s play, and I spent a year learning how not to get caught doing things with the computer that weren’t allowed, while learning the reasonably simple (for an experienced draftsman like myself) drawing exercises that I had to produce in order to pass the class.
When the classes were done and I felt prepared for what I saw as the inevitable future, my employers threw me a curveball and bought into a CAD program other than the one I had trained for. While I had spent a year learning AutoCAD, other CAD programs had made inroads in the architecture field and my employers purchased a program called CADvance and hired an operator from outside the firm to run the system.
Side note. It’s nice to know I was actually behind the times when I started my evangelizing for CAD and computers in the architecture sphere. I found this article over at Reanimation Library on Boyd Auger’s 1972 book, The Architect and the Computer quite interesting. Quite interesting that in 1972 the trend towards digitization was this apparent to anyone, even if they were really only promoting the products they had created to digitize documents. I really do hate to think that something that I thought was apparent was invisible to everyone else. Clearly, not everyone. /sidenote
Undaunted, I simply learned the far more straightforward command parameters for CADvance. The process took all of three days and I was already (unbeknownst to me) as fast or faster than the outside help my employers had hired. I mastered his system and improved on it before realizing I wasn’t going to be going anywhere in that firm and made the move to another firm. A larger firm that used both systems I already knew.
It was about the time that my new employers adopted a third system Microstation and I mastered that program (with the help of the Wife’s student software discounts, her then ongoing pursuit of an MLIS and her still invaluable proofreading skills. Love you too, dear) and then started helping my co-workers become proficient with this new third system that I began to realize that I wasn’t the slowest person on the floor. In the middle of a monologue of self-criticism about streamlining some process or other, the coworker I was talking to stopped me cold to inform me that you know you are the fastest draftsman on the floor, right? No, I hadn’t known it until he pointed it out.
Liberation from false constraints, from labels you never wanted, never accepted, is a feeling that is hard to describe. Hard to fathom. I will be eternally grateful to my friend and coworker who pointed this fact out to me. It was years of additional work understanding just what it meant to not be seen as slow and stupid. To not have to push back against a negative view, a constraint you internalized and never let go of until long after everyone around you had stopped holding the view and instead were puzzled by what continues to drive you to be faster.
A recurring argument that I had with a few of my supervisors and fellow architects (back when I had a license, back when I was one of them) was the common belief that people aren’t in nature when they aren’t working on a 2D paper surface. The misguided notion that the synthesis of ideas requires a fixed medium (paper) and a writing implement (pencil) to engage the creative brain.
Future architects are explicitly told by some college professors that they “cannot design in a computer environment.” This false limitation being taught to so many students appals me to my core. It invalidates everything about me, my experiences, my pain and trials and eventual triumph. Is it a good thing that I never went to college to learn architecture? Had I followed the traditional route, embarked on a master’s degree in Architecture, I might have had this additional bad information to wrestle with and put behind me. Computer design is wholly artificial and so it can’t be a place to design in.
If I accepted this falsehood as truth I would never have embarked on my journey in the first place. I’d be just as disabled and just as hopeless, but with no belief that I could ever be more than that. Paper and pencil are natural to the people who find them natural. If the characters will not flow from you hands using them, find some other medium to express yourself in. All of them are natural. Do what you can do and never apologize for having to take a different road than everybody else. None of them know what experiences you have, what disabilities you will have to cope with. What gifts you might have hiding inside.
This is the end of the story of Coping With Dysgraphia. It only gets me to the middle of my architecture story, a story I still haven’t told fully; beginning, middle or end. That story will have to wait for another muse, another time. My parting thought on the subject of dysgraphia is, I wish I could remember what the subject of that term paper was that I refused to write way back when. When I was a sophomore in Garden City in 1978 flunking out of english class. I could write a whole book on the subject now with the tools we have today. I wonder what kind of story that would have been then if I could have simply been able to do what I do now?
Listening to The Hero’s Journey on the TED radio hour inspired me to put this story into words. Specifically it was the story of Ismael Nazario who was convicted of a crime and sent to Rikers as a teen. There but for grace go I. The difference that the color of your skin can make.
Allergies have been kicking my ass for the last month. The Mother-in-Law has been declining in health for the last three months, requiring The Wife to be away for weeks at a time coordinating her care. This development has laid more burdens on my shoulders, more responsibility than I have had to maintain stress levels under than I have had to endure since going on disability.
The Son is a senior in high school, The Daughter has a job and neither of them drive yet. I have to train them to drive in one direction, getting them to their respective appointments on time in the process, and still be able to drive myself back home without triggering Meniere’s symptoms.
With all of this going on, health of relatives, my health, my children’s demands on my time, etc, I’ve still written more in the last few months than I have in years. You may well ask “why is that?” because I’m writing this article to tell you why that is, even though this is starting to feel like an infomercial from the inside, my writing of this piece. I’m three months into my CPAP experience and I credit my clearly improved outlook to my much improved sleep patterns.
To start from the beginning; I don’t think I’ve ever slept right at any point in my life. I have never gotten up in the morning on my own. It takes me hours to wake up (still does sometimes) to feel as if I am present in the world. Mornings have always been my enemy, and early arrivals have almost always been impossible to attain. The crime here is that I never thought to ask why this was. Not one time.
I accepted the blame for attendance problems, all my life. You are lazy. You need discipline. You need to do this or that fad thing. More light at different times of the day. Take these sleep aids, take this wake up pill, drink coffee in the morning, etc, etc, etc. The list is never ending and all of it has been wrong. All of it.
I used to get by on 4 hours of sleep a night, pretty routinely. Go to bed at 2am, wake up at 7am, go to work. Usually driving in the morning while not really feeling awake, having had to be shaken awake by The (ever faithful) Wife and pushed out the door with a cup of go juice after the mandatory wake up shower. I have always hated naps. I never feel like I wake up from a nap. The lethargy just continues until I succumb to sleep for several hours.
Weekends were sleep catch up times (something which has been demonstrated not to work) we would sleep well into the afternoon most Saturdays and Sundays, and still not feel well rested come Monday morning when the process started all over again.
Then the Meniere’s symptoms got worse, expanding from the Fall and Spring weeks of suffering to the months of suffering to almost every other day suffering. Rotational vertigo every week, sometimes more than once a week. I had to stop working. I had to figure out what went wrong. Why was this happening to me?
When I started paying attention to how I felt, when I started allowing myself to follow my own rhythms rather than the imposed rhythms of modern society; sleep when I was tired, eat when I was hungry, expend effort when I felt strong enough, I started noticing something about my sleep.
I slept way, way too long. I’m not talking about 9 or 10 hours. Sixteen hours was common, sometimes as long as a full 24 hours. At first we chalked this up to the side effects of the anti-nausea drugs for vertigo symptoms. I’ve always been easy to medicate. I’m a lightweight drinker, and generally another person’s half-dose of medication will have the desired effect on me. But the long sleep wasn’t limited to days when I had been taking medication. I also had very, very long periods of intense dreaming sleep. I’ve written about a few of these in the past. Most of them were unintelligible upon waking, but I really enjoyed them while in them.
Finally this year I decided to start looking into my sleep patterns to see if there was something that could actually be done to get me to sleep something like normal hours. Normal in a modern sense, not a historical sense, which is different.
I went to see a sleep specialist on the advice of one of my doctors. The sleep specialist said sleep apnea before I was even scheduled for a test. Well, that wouldn’t do. I’m not going to a doctor to be sold a treatment without a diagnosis. I was raised by a car salesman, I know when I’m being sold something, and this guy was a salesman and a half. Definitely not a doctor. So after getting another doctor, a real doctor (second opinion time) to understand that I actually wanted to be tested first, I did the sleep study. Eight hours of misery with hardly a wink of sleep from my perspective, trussed up like a turkey with wires and monitors the whole time. The technician swore to the fact that I actually did sleep, and that I stopped breathing just under 30 times an hour while I was asleep. Well within the range of needing a CPAP machine to help regulate breathing during sleep. So a second study wearing the CPAP mask was scheduled.
I was very anxious about sleeping with a CPAP mask. Sleeping with a mask on has always horrified me, in an Alien stuck to your face kind of way. Don’t believe me? This was the nightmare I had while waiting to be tested.
May 19, 2016 2:52 pm – Just woke up from another intense dream. Another architecture dream. But the dream wasn’t architecture, the dream was a video game. The particulars of the dream, the game, the architecture in the game, are not important.What is important is the meaning of the dream, the game, the architecture. I awoke with a profound sense of loss. A future fraught with anguish. Is this what my life is now? Am I defined by my abilities to play a game? It’s been 8 years or so since I picked up World of Warcraft. On the one hand it has kept me attached to people, given me a reason to get out of bed even if I didn’t feel like doing anything besides stare at a screen. On the other hand it consumes a lot of time that I increasingly feel should be devoted elsewhere, if only I felt well enough often enough to do something else.
If that is true, that I am defined by my abilities to play a game, then even by that limited measure I’m not doing too good. I cannot see the game well enough to follow the various bits on the screen and know where to move in time to keep myself alive. As a raid healer, that is a serious problem. I not only have to stay alive, I have to keep others alive. When they start telling you “your job is to stay alive” they are including you in their raid out of the kindness of their hearts and not much else.
My health is deteriorating further. The dreams are a signal. They have become more intense and lengthy as my health has worsened. I can fall asleep one day and wake up almost a full day later and not feel as if I have rested. How is this even possible? The notion that someone who used to brag about being able to get by on 4 (and one half. Most important bit that last half) hours of sleep a night could sleep 9, 10, 12, 16, 28 hours and not feel rested is baffling.
So I’m seeing sleep specialists now. Sleep specialists who are hinting that my sleep has probably never been normal. That I have a problem with sleeping that they can fix. Should I let them fix it? The dreams are all I have anymore. If they make the dreams go away, what will be left that is mine?
So the anguished dream I just woke up from?
I know I am real, but the characters in the dream, they are movie characters even though they stand in for caricatures of my bosses from the past. Frank Gaffney is in charge of the firm. Grace Ripley (blonde in a blue wig?) runs all the operations. The game is part of the business, the architecture of the story. The game mirrors the events that occur in the ‘reality’ of the job, serving as an oracle for what happens next. Except that the dream, the reality, is coming to an end. The game is bugged and can’t be completed. It has to be reset. It resets reality. The characters reform in different roles and the game/reality starts over.
Without my dreams, what am I? If my dreams directed me to take up architecture, informed my designs and my goals, will fixing the sleep problem I’ve apparently had all my life destroy the creative side of my life? Will I finally fully wake up and discover all of it was a dream? The certificates and licenses? The rolls of drawings? The wife and children? What is real? What is the dream? I don’t think I can tell anymore.
I am stuck. Stuck in a cycle that has to be ended. I have to figure out what is ailing me so that I can get back to some sense of normality. I cannot continue to sleep for extended periods and marvel at the texture of the dreams. I guess it is time to really wake up. Hope I see everyone on the other side of treatment. Would hate to lose anyone to a reset.
These were my thoughts about the dream, and the dream itself, before going in for the CPAP test. You are being over dramatic, The Wife objected. Don’t publish that right now. Do the test first. See what happens. So I decided to quash my fears until after the test was completed. Let them remain unvoiced for the time being. But I did vow to start this article at the time. I would record my thoughts about my CPAP experience during and after the diagnosis and treatment. I wanted to at least do that much. Record my fears. The facehugger nightmares. The vague fears that life is passing me by and I can’t do a thing about it. But also to record my experiences with the treatment just as they occurred.
The weird part is, once I tried sleeping with the mask on, I knew I was hooked. Right away. The first test was torture. The wires woke me up. The sensors woke me up. I tossed and turned all night. The second test, the test with the mask on, was the best sleep I had had in years. Years. Longer than I could even remember. Never even noticed the wires and sensors until the next morning. Breakfast was ecstasy. My mind bounced everywhere.
I quite literally could not wait to get a machine for the house so that I could try it out regularly in an environment that I felt was comfortable. That process took a few weeks. Medicare pays, but it isn’t fast about doing it. Eventually I did get a machine for the house and that is when the actual work with the machine, the company that supplied the machine, started.
From the first night I realized that I needed to get something to hold my mouth closed at night. I would wake up with my mouth dry as a bone. The chin strap they sent me was of cheap manufacture, but The Wife is the granddaughter of a seamstress, so there was a remedy for that cheap chinstrap that fell apart problem.
Getting the supplies from the machine supplier is probably the most worrisome part of this process. They are completely unwilling to give you extra parts just in case you might need to swap out straps or masks or filters or anything.
Other than that process, dealing with insurers and medical aid suppliers, the experience with the machine has been pretty smooth sailing so far. I put on my flight mask at night and “ascend to 15,000 feet.” I am in my third month with the machine and although I still sleep as much as twelve or 13 hours on occasion (especially when the allergies trigger Meniere’s. Like today) I can get up in the morning when I need to, for the first time since early in my career as a draftsman. Get The Son to school on time with more regularity than we’ve probably done in his entire life.
I haven’t had time to play many games, what with all the other problems that have had to be dealt with this summer. I think I only managed to go swimming one time, which is a record for me. I generally spend days at a time in the pool. Not this summer. There was definitely no time to start the new version of World of Warcraft, even if I had wanted to (luckily I didn’t) and I still haven’t finished the one game I wanted to play, Skyrim.
I have done some writing though, a lot more writing than I really felt I could pull off. I’m still working on some other articles that I have to publish before the election ends, but I have little fear I’ll get to those too, as well as pick up some articles I’ve left laying around for far too long.
Best of all, the dreams continue. I don’t know why I have these extended dream periods, but I am thankful for them. They are more hopeful these days, at least. Not fraught with horrors and endings like they had been for the last decade or so. Still pretty grim, but a better shade of grim. I’ll take that.
I’ve had several requests to describe what Rotational Vertigo feels like to me. It is actually quite hard to describe in a way that the average person might be able to visualize. When I’m pressed for time I frequently say something like imagine the worst drunken binge you’ve ever been on. For most people (a majority, sadly) that gets an enlightened response.
But that really doesn’t do the symptom justice. For me, being drunk (even mildly intoxicated) can be vertigo inducing, has always been vertigo inducing. I don’t drink and go to sleep anymore. That almost never happens. If I feel like having a glass or two of brandy or cognac, I’m generally up for the duration of the effect (8 hours or so) because lying down makes the vertigo worse.
So what is rotational vertigo really like?
First, imagine you are at the center of a merry-go-round. The merry-go-round is spinning. It doesn’t even have to spin fast, it can spin quite slowly, just enough that you can’t fixate on a single point in the background.
This is the key problem with the spinning. It isn’t real, but your body doesn’t know this. Your body doesn’t know that the balance mechanism in the ears is broken. So your eyes try to track the spin that isn’t there, causing your vision to dance back and forth (this is why reading can be a chore when you have a problem with vertigo) mimicking the spin the balance mechanism says is occurring.
So you are on a spinning merry-go-round. Now imagine that every stationary object you want to interact with is spinning at the same rate. There is no fixed point to anchor to (if you concentrate really hard you might just be able to override this. Maybe) so the handrails on the stairway, the walls of the shower, the glass of water to wash your pills down with dance madly around you while you try vainly to grab them from thin air.
Now imagine that this dance continues for the rest of your life; figuratively, if not in reality. Because it feels like forever. I’ve fought this thing for days at a time in the past, just because I’d already slept for what felt like days and I just couldn’t sleep anymore no matter how many pills I took.
I can’t describe it better than that. I don’t dare go looking for video to describe it. Just seeing video that includes rotation in the theater can bring on sympathetic feelings of spinning. I frequently must look away from films with rapid rotation (Gravity was torturous. Loved that film, couldn’t watch half of it. Go see Gravity in the IMax and sit real close with your hands trapped at your sides) or I have to hold my hands up in front of my face so that I can see that there is a stationary object in view while the rotation on screen persists.
So how should I treat it? is the question you are probably left with if you have this symptom. My article Treating Meniere’s & Its Symptoms covers general treatment suggestions for Meniere’s. However, dizziness and vertigo are so common that they rate a separate discussion from the general Meniere’s discussion.
There are various treatments for re-aligning the otoconia in the inner ear, which is frequently the culprit causing dizziness and some forms of vertigo. benign paroxysmal positional vertigo (BPPV) is one of those types of dizziness. I’ve tried a few of these treatments for persistent dizziness (dizziness that lasts several days) with limited success. The half-somersault maneuver looks like one of those kinds of treatments.
If the problem is the otoconia then this kind of treatment should alleviate the problem. If it isn’t then it won’t. It is pretty straight-forward to just try these procedures if the vertigo doesn’t let up after a few hours. You are liable to find that it won’t help for meniere’s vertigo and dizziness. If you still feel dizzy it is probably a good idea to see a specialist before ruling this kind of treatment out entirely. I have given up on them unless it is a specific kind of dizziness that I recognize as being different from the Meniere’s.
The one thing I have found that helps for vertigo and dizziness aside from drugs is finding a head position and/or a focus point to stare at. I personally find that turning the head slightly to my right (I am afflicted in the left ear) and looking slightly downward is the best position for me. I have a catbus that sits near the correct position next to the bed. A friendly catbus that smiles its cheshire grin at me while I try desperately not to spin.
Staring at a fixed point in space, preferably staring at an object that is crafted to inspire trust and happiness, helps quell the spinning long enough for the drugs to kick in, or until the spell passes. One or the other of these two things will occur eventually.
I’ve been meaning to write this post for years. When I started the process in 2005, I never dreamed that it would take me several years and multiple advocates just to secure the disability income that I had paid for through my taxes for my entire life. But it did, and when it was finally finished my then attorney said “you should write this all down so that other people can find out how this is done. I’ll even refer my clients to it” (I’m going to hold her to that one) but months turned into years, memory fades, depression is an evil beast, and procrastination is a self-fulfilling prophecy.
A few days ago a Facebook friend of mine posted a link to an article about Alecia Pennington. Now, I don’t know how much of her story is true, but her tale of being denied basic services due to lack of documentation reminded me of the troubles I went through getting my disability approved.
…and it all started with the lack of a US birth certificate. Well, actually it started with a friend of a friend who said he could act as my advocate for my Social Security claim, but several years later it ended with my getting my own passport.
I gave up working very grudgingly. I had been out of work for months before my last official full time job. I worked some contracts in those months, but mostly I just looked for work and wished I could get hired on somewhere. This lack of full time employment went on for almost a year, maybe more than a year, and then I was offered two jobs simultaneously. There was a job available for me in Las Vegas that would have required me to move the whole family (I’m actually glad I didn’t take that one now) and the other job was here in Austin, working for an architect who was adamant he needed me. He said he knew what I was good at, was aware of what my health was like and needed me to save his business (his words) So I agreed to go work for him and turned down the job in Las Vegas that was offering more money.
I spent eight months working at my last full time job. Less time than I spent trying to find that job. Eight months of learning another CAD system (I think that’s 5 different CAD platforms) documenting the tools for other users in the firm, automating the process of modeling and document production as much as possible. The coup-de-gras for this whole endeavor was producing finish-out drawings for an office space in less than a day, just to demonstrate how the process could be completed quickly.
That work, the kind of managerial design work I loved getting into, coupled with spending an excessive amount of time on paper getting to that point, all while suffering with weekly active vertigo and the accompanying brain fog that slows mental processes (a side effect of the vertigo) I spent months finishing the modeling and documentation on the building that was my primary responsibility, when that project probably should have been finished in weeks. That fumble that I couldn’t explain outside of sickness ultimately left me jobless again with a family to feed and even fewer possibilities than I had a year previously.
I was literally hopeless at that point. The months of contract work that I had engaged in before that final full time job had taught me that I wasn’t as good at my job as I remembered being. The two or three part-time contracts I got after that last full time job simply underscored this fact. I was failing to do the work required because I could no longer picture the construction in my head as I had done previously, the mental trick that allowed me to do the job that I wanted to do was getting harder and harder to grasp.
I didn’t know what else I could do, and the bills kept coming in, my health care incurring mounting costs of its own on top of everything else. I was spending a lot of time helping a wheelchair bound family friend then, and she suggested I contact a friend of hers to see if disability was something I could get. Something to keep the roof over my family’s heads. Given that the only remaining choice that appeared to me was life insurance coupled with a fatal accident, I figured I’d give the government a chance to own up to the promise that I could rely on it to be there when I was in need. So I called her friend, and we started the process.
The first thing you need to know about applying for disability is that you have to have doctors on your side in order for the application to be successful. You have to have a medical finding in writing. A statement from a medical professional that you have an illness which is covered as a disability. Luckily for me Meniere’s is one of those illnesses, and I had an ENT who was happy to backup my disability claim. So we filled out the government application forms, got the statement from my doctor, and then we filed all the documents and waited.
You do a lot of waiting when dealing with the government. Every time I mention filing or documents, you should understand that at least a month goes by before there is a response. That is if you are lucky. If you aren’t lucky they lose your paperwork and you have to refile and wait another month (that happened more than once) It’s also worth noting that every single application for disability will be denied the first time. So if you don’t intend to appeal, don’t even start.
The first application was denied (of course) So we appealed. That appeal was denied. On second appeal, we had to go before the administrative law judge. So I got all dressed up and went to that hearing, prepared to throw up on the judge if I needed to. That appeal was also denied (I probably should have thrown up on him) This was the point when I realized that what I needed wasn’t just an advocate for my Social Security disability claim. I needed an attorney, because the advocate I had just shrugged and told me he tried. Trying was not enough, in my book. I was owed disability and my family had to have income, one way or the other.
If you are thinking of pursuing a disability claim, start by getting an attorney on your side and save yourself some time. That should probably be the first thing to know, but it was the second thing for me. My new found attorney and I started another application through the process. This second application had secondary documentation and signed affidavits from witnesses. This one was also denied the first time through, just like the last one.
We appealed. The appeal was denied. We appealed again. Then one day (months later) much like any other day in the life of the average chronic illness sufferer. Desperate. Feeling alone. Feeling like the world just wants you to die quietly somewhere. My attorney called. She said “the Meniere’s isn’t enough by itself. We can’t get approved with just the Meniere’s.” She paused for a bit. “Do you think you are depressed?”
Am I depressed? Well, I couldn’t very well admit that suicide was my only other alternative to government assistance (not without ruining the viability of that option) the only other alternative if I wanted to see my family fed. So I had to admit that I was struggling with just a little bit of depression. The entire tone of the conversation changed. She said something like that will make it much easier for me and got back to work on my case.
I had almost given up the faint hope that disability would offer when the approval for my claim finally came through. After two years of applications, denials and appeals, I was approved for disability payments. Just in time too, because we had scraped out the last of our savings and were in the process of hocking valuable items in order to get the bills paid that month.
There was just one problem, though. One tiny little hitch. Hardly worth the bother, really. See here, Ray Anthony Steele, you aren’t really a U.S. citizen.
I’ve paid taxes my entire working life, starting at age sixteen. I’ve never failed to file, I’ve never failed to pay. I even paid twice some years. Every time that the IRS audited me I wrote them another check, and they audited me every year that I was a card-carrying member of the Libertarian Party. I’ve paid my dues for 30 years. I think I’m a member of this club, this club called the United States, and I would be seen that way by the government except for one tiny little problem.
When getting a Social Security card, make sure that you bring with you all the documentation required to prove US citizenship; do not, under any circumstances, allow the person handling your application to harbor any illusions that you are not 100% a US citizen or allow them to submit the application without insuring that the box “US citizen” is checked. This is of paramount importance.
I was born overseas to parents who were in the military, stationed overseas. The hospital on the base where my parents were stationed didn’t have the ability to handle a premature birth, and I was early according to the doctor’s charts. So my mom went to where the premature birth care was, a hospital off-base that wasn’t considered part of US territory. All US military bases are considered part of the United States, just as all embassies are considered part of the country they represent. I wasn’t born on the base, I was born in England, at the hospital my mom had been sent to by the military doctors. As a consequence of this little snafu, I have dual citizenship. I’m a limey (it explains my love of a cuppa) as well as a US citizen. I have one of those birth certificates that makes conservatives sleep poorly at night knowing I live next to them.
When I got my Social Security card back in the dark ages before computers, we went in with my British birth certificate. They told us no problem and marked me down as not a US citizen. Forty years later, it really is a problem after all. It’s a problem because that little notation on my Social Security record means I can’t claim benefits from the US government. So, so long Mr. Steele, don’t let the door hit you on the ass on the way out. It matters not at all that taxes are deducted from our paychecks every time we earn a wage. It doesn’t matter that both our parents are American citizens. What matters is the checkbox next to US citizen on the Social Security form. Believe it or not it is true. Foreigners can not qualify for benefits.
According to the computers at the Social Security Administration, I wasn’t a citizen. We had stumbled across this fact earlier in the process and when it was noticed by the Social Security representative who filed my paperwork I was assured that if the claim was validated, the citizenship problem wouldn’t be an issue. I believe the phrase not a problem was repeated then, too. Except it was. Because my birth certificate is British. Very clearly British and not American. What was needed to clear this up was a record from the embassy in London stating that I was an American citizen born to US parents. This was a piece of paper I didn’t’ have.
At this point I started talking to immigration attorneys. Immigration law is a tangled jungle of lies and deception; and nobody, not even non-immigration attorneys have a clue how immigration decisions are rendered. I’m not even sure immigration attorneys know. I did find out that the specific document I needed was called a Council Record. If I could find that document it would prove that I was an American citizen born abroad, and I would qualify for disability.
A Council Record is an obscure reference for those who aren’t up on all this legal mumbo-jumbo. I’ll try my best to clear up the confusion here. The council (or counsel) in question in this instance is the United States ambassador to England and the United Kingdom. He is the councilor that has jurisdiction over births and deaths in the country that he is ambassador to, ergo Council Record. If you were born overseas you should have a document like the one above that says you were born to US citizens overseas. That is you US birth certificate, for all intents and purposes. Hang on to that document if you run across it. It is your lifeline to access government services.
I didn’t have a council record. I had never seen said document before. I had no idea what it looked like, so I started talking to relatives. I talked to my mom first. She remembered that I came into the country on her passport, that I was listed as a US citizen when I entered the country. Unfortunately she couldn’t find that old passport, it had been lost somewhere in the 20 or so family moves that had occurred since the 1960’s. So I went back to the immigration attorney. He told me it was possible to request a copy of the passport, if I was listed on the passport.
So I found that form. I filled it out, got it notarized and sent it in. Then I waited. And waited. And waited. I waited a long time, longer than any of the other times I waited on a government response through this entire multi-year process. The State department eventually did find and mail the passport record back to me, a lucky break at last, and I was able to use that record to apply for my own passport. That passport made me a citizen. After forty years of productive life in the US listed as a non-citizen, I officially became a citizen just to get disability benefits. There is some humor in there somewhere, I’m sure.
…and The government said congratulations citizen. Here’s your first check.
Hang on now. This check is for one month. I’ve been working on this process for nearly 4 years now. Am I not owed disability since the date of my first application? “Well, yes” the government said. “That would be true if you had been a citizen when you first applied. But you see this date on your passport, the one saying it was issued last month? That is when you became a citizen.” Once again, have a nice day, don’t let the door hit you on the ass on your way out.
Nothing doing. I am not giving up now. Four years I’ve been at this. Four fucking years. I’m not stopping till I get my four years of blood back. At this point I’m trying to exude patience and understanding, just to see if I can get through to the bureaucrat on the other side of the desk. I have this passport because my mother brought me back to the US on her passport back in the 1960’s. That passport from the 1960’s makes me a citizen. A citizen for my whole fucking life. It says so right on this document.
…and the government replies, “Well, that might be true, but that just means your mother was a citizen and she brought you home with her. Was your father a citizen?”
Was my father a citizen? Was my father a citizen?Well, he was in the United States military at the time I was conceived, so for all of our sakes I hope he was. I mean, we don’t want any foreigners fighting in our ranks or having sex with our women, that would be unthinkable.
I don’t know my biological father. I sent the man an invitation to my high school graduation even though I had never met him in living memory. He never replied to the invitation, has never attempted to get in touch with me at any point during my life. For all I knew he didn’t even care if I was alive or not. I was raised by two different men instead of by my biological father and both of them tried to be dad and failed in various ways. I have never seen a page of correspondence from my biological father anywhere in any record that I kept or my mother kept. He’s a cipher to me. A complete unknown. I wouldn’t know where to even contact him at this point. I don’t know if he is still alive (not sure if I care either) I’m sure he had a Social Security number, I’m sure he was a citizen. I’m sure he has a military record. I have no idea how that information is dredged up without contacting his family, which had also been tried previously and ended in failure.
So I asked the Social Security administration if they knew how to find his number, how to track down his military record. I started putting out feelers, once again trying to get that information, looking for his family to contact. However, the Social Security administration came up with the information all by themselves. Proving once and for all (for me anyway) that they aren’t all demons placed here on Earth just to torment us average folk. They attached his file to mine and approved the back payments without my having to do the costly and time consuming legwork of tracking down my father and armwrestling him mano-a-mano for his Social Security number.
After that. After the years of fighting. After the many setbacks. After the successful conclusion of the application and subsequent reversal of the judgement that I was not a citizen. There was a year or two of argument about paying my attorney and discovering that they had withheld two attorneys worth of money from my back payments, and so they should give me money rather than try to take money away from me to pay my attorney. But, I was a citizen and I was getting the disability that I had dutifully paid for all my life. My children had a home. We had food on the table. I was satisfied.
Then my dad died. The man who tried hardest to be dad, to care. The man I could rely on even though he wasn’t married to my mom anymore. Jack Steele, the man whose name I carry with pride, died. A decade of battle with cancer was finally over. He made up for his earlier failures, and I accepted his apologies and considered him my dad for a good number of years before the end, even though his genes are not my genes. I loved him. I loved his family and their history. I was very sad to see him go.
While we were in Colorado preparing for the funeral, going through old records and photos, reminiscing about the past, his last wife (my second mom. I think I have 4 now. Maybe even 5. Well, mom is mom, but then there are other moms. Yes, it’s confusing) she was suddenly struck with a memory. When they were going through the attic at gramma’s house preparing it for sale, they stumbled across a box of stuff that had been shipped back to the US from England when mom moved back to the States with me. There was a document about me in the box, and she didn’t know if it was important but she thought I’d want to keep it. After rummaging around in a drawer for a few minutes, she produced the Council Record that would have saved me years of work had I only known who to talk to about it. I just thanked her and gave her a hug. What else are you going to do, at that point?
That’s it. That’s my disability story finally written. I should probably see if I can track down the document numbers for the documents I submitted, just for clarity’s sake. But right now I just want to step back and admire the fact that I’ve written this damn thing. It took me long enough. Longer than it took to get my disability approved? Just about.
All about Meniere’s Disease. Updated periodically.
When I’m questioned about why I’m retired already; or when someone airs doubts about my invisible disability, are you really disabled? the subject of Meniere’s disease is bound to surface. It is bound to surface because Meniere’s disease is the answer to both questions. If you just stumbled across this article on my blog and want to know, what is Meniere’s disease? I’ve never heard of it. I can understand that feeling. I’d never heard of it before its symptoms wrecked my life. Here’s a snippet on the subject of Meniere’s disease from my favorite resource of first resort.